Having long COVID has shaken my faith in the medical establishment. I'm now scared to talk to my GP; it feels like going on trial without a lawyer, being presumed guilty of hypochondria until proven innocent, and being sentenced to indefinite denial of appropriate care.
Same here. I can’t talk to him about it all. I know he’ll just prescribe me more anxiety medication and send me home without even attempting to address anything else.
100% - I’ve had ME/CFS for 26 years, I don’t even mention it to most doctors, I only talk about it with a specific doctor I have who specialises in CFS
As a person who developed cfs....I have always respected Drs who accepted that the do not know but are willing to gmsupport you and go on the journey with you, with heart, caring, compassion and learning along the way.
This was painfully familiar to me. I was referred to a psycologist and had to explain to him why I was there. I became depressed from being treated like this. Thank you for talking about this important long covid issue.
drink the miracle mineral solution in less than 12 hours it will clear the dead viral debris out of your system ,thats whats keeping you stuck in sickness,dead viral debris debris wont show up in any test so the doctors think you are lying,doctors are causing patients ptsd by leaving them totally undiagnosed,they are a disgrace ,i heal post viral conditions on a daily basis,the root cause of these conditions low atp levels coming from low glutathione levels,its a nutritional deficiency problem and its easily healed the miracle mineral solution cost 7.69 uk pounds
In 2015 I was a university student and a semi professional footballer. I then got mononucleosis (EBV). I have been sick ever since with M.E... :-( if you think there is no help and attention now, just imagine before the pandemic. It frustrates me that M.E. gets a new name all the time. Every virus can cause it. Thanks to all you new patients and advocates for giving me just a bit of hope.
Yep. I got CFS thirty years ago after a seasonal flu virus which everyone around me had. They all recovered but I didn't . I'm trying long term Ivermectin with Zinc to try and clear out the viral load. I take 15mg to 18mg Ivermectin every 72 hours along with 22mg zinc everyday. I don't know it it's going to work but other people are having success with it. Check out "Drbeen Medical Lectures" on UA-cam. He talks about using ivermectin for EBV.
@@raymilland3413 ivm and zinc is highly effective,it dont work for some the miracle mineral solution works for everyone,in less than 12 hours it clears all the dead viral debris out of your system thats hwtas keeping you stuck in sickness,thats what a post viral condition is the cost of the miracle 7.69 uk pounds message me i will type outa protocol that will have you full of energy indays,
I actually feel better than since before I was infected, and look better. In my opinion, I think I had NAD+ deficiency and mitochondria dysfunction off and on most of my life, and COVID-19 exacerbated a pre-existing condition. The MCAS Keto diet works well, and I feel strong. The supplements also help.
@@nomebear a dairy free ketogenic diet has given me some relief from me ME/CFS symptoms too. I'm still not well by any stretch but I do have more function than I did before. I would presume it could be of help to those with Long-covid but it takes time to have an effect for people to see if it is a useful tool
Well so different viruses do vary of course and given the large variance in symptoms, it is entirely possible that there are many subtypes of ME/CFS and that in the case there is viral persistence, the type of virus determines your symptom profile if you will. Some viruses have higher percentages of people who have lingering effects than others. Some viruses like hiv clearly have lingering effects if left untreated, but are deliberately not put under the ME/CFS umbrella. So I guess ME/CFS is really a container term for many types of illnesses with many different underlying mechanisms of how they make you sick, depending on the type of virus that’s (been) plaguing you, among others. So is long Covid a separate thing? I think a good case is to be made it is and a good case is to be made it isn’t.
As a young male athlete I was belittled and ridiculed by doctors when I got sick with epstein barr virus in 2014. They gave me the “health anxiety” diagnosis although I could barely get out of bed. It doesn’t matter who you are when you get chronically ill with ME. The doctors won’t care.
Not totally sure about this.....but I get the feeling males........especially young males, get even less sympathy when it comes to harder to diagnose/prove illness. Like.........come on, pull your socks up and get on with it...kinda thing.
I'm a colord male, 35 years old as Sara, and I received the same treatment for my long-covid when I was taken to hospital in the ER at 2 different hospitals. Both ER Dr's (females around 35 and 40 yes old) both sent me back home with Ativan saying I'm having anxiety attacks because my chest x ray and bloods came back clear. Just slight eosinophila indicating allergic reaction. When finally seeing a pulmonologist he said my EKG was perfect and decided that a psychiatrist would now have to take over and that he could not do anything more to help me. Needless to say I was eventually told that I am depressed and they gave me anti depression meds (benzodiazapines). I have no history of anxiety or depression.
As a psychiastrist i have received long post viral fatigue patients ( dengue, zika, mononucleosis, and now long covid) . I am an nearly retired doctor . Every story is special . Very often the patient comes to a psychiatrist adressed by his MP whodoes not know what to do after many physical and other exams.. The prediagnosis is « depression » . Or anxiety . They always need to talk and describe the way they don’t feel listened. But not always.We must learn from this pandemic, and we must learn from our patients.
i have ME and have had it for nearly 20 years, my GP diagnosed me after 6 months of tests and prescribed GET which i didnt take up as there was no way i could do any exercise at the time. i was virtually bed bound for weeks. i have been back and forth for 20 years and NOTHING has changed in the profession. I do not go unless absolutely necessary i deal with everything myself. One GP told me people just wallow in their ME another said it was complicated, and neuro consultant told me i was in a 'chronic migraine state' and that was causing all my symptoms. Luckily i have not heard any negative comments to my face but i have had no empathy or understanding at all, i was also put on antidepressants. Only my family know how unwell i have been. The medical profession has failed us all.
Sexism in medical care is no joke. Hystericus... Hysterical...Hysterectomy. Still very much a problem experienced by women today. Thank you for acknowledging this.
I encountered this recently on my ward. I was talking to a neurologist about a patient with Functional Neurological Disorder. He was unaware I have FND (due to COVID) as well as Long Covid. He said, “FND is a psychiatric condition seen in hysterical women who think they’ve had a traumatic childhood”. Arse! He isn’t even one of the older generation.
Another great video as always. I'd love to see a series where you interview people who have recovered from Long Covid and ME/CFS to get a picture on different strategies to combat the disease.
Another brilliant film Gez - My heart went out to Kelly & I so hope she is making a good recovery and is now well supported. I had 2 trips to A&E - I am an ex nurse and am still staggered at the dismissive way I was treated. I had a similar heart rate and was terrified - at the first hospital I didn’t apparently meet the criteria to see a Doctor and the nurse said she had been told to send patients away? At the 2nd hospital I went in via ambulance and I was again discharged having been left to sit in a chair for over 12 hours as they couldn’t find anything wrong - my heart rate was 135 bpm - the next “attack” I had I refused to go to hospital again and seriously decided I would prefer to die at home - like Kelly I thought I was dying. Had the GP that I saw weeks before this listened to me I actually told her I was experiencing what felt like a cytokine storm - she decided to test me for diabetes - I often wonder had she listened and actually treated me if I would be in this position now. Thank you for all you are doing and we can only hope that something major will change .
I was hospitalized three times after seizures. They tested for epilepsy and embolism. Embolism couldn't be excluded because of high D-Dimers. But D-Dimers might just be due to ME pathophysiology. Eventually, I stopped caring. When I get seizures, I have a few moments to see it coming, lay on the floor asap, and prepare to die. When I wake up, I have similar shaking symptoms like Dr. Fearnley describes. These days, when I wake up, I just try to move on with my life. If I visited doctors for every symptom, the investment of my energy and wellbeing wouldn't be worth it. Every appointment comes with a high risk of overexertion. So I get PEM just to have the same narrative repeated by different doctors. That my basic blood work is fine and that I'm "perfectly healthy", that I should try to engage in more social activities, try to gradually increase my activities, take SSRIs, homeopathy, osteopathy, psychotherapy. I have plenty of extended biomarkers that are consistent with ME pathophysiology, but not in my basic blood work. All of these suggested therapies are either contraindicated or come with an increased risk of overexertion. I've heard this too often. "You're perfectly healthy". When I ask them to read the latest CFS/ME guidelines, they say that they don't have time for this. But they have time to try to persuade me of my mental illness. And they have time to disagree and make an argument when I explain to them that it isn't in my head. The only thing that might be in my head is a lingering virus. What I'm trying to say. I can relate this experience of going to the hospital because of acute symptoms, and not being taken seriously there. My own way of handling this is accepting my faith, wherever it goes. Not sure if it's the right way, but I don't see any benefit in going to the hospital anymore. Assuming it's critical one day, they wouldn't know how to treat me either way. They would try to treat the symptoms and what they see in the blood, I assume.
@@patriciabryant8892 Thank you. I'm sorry for you too. I think many medical practicioners don't understand the sacrifice it takes for someone with this condition to have an appointment, and to travel. The usual attitude I get is that I'm just there because I have nothing else to do. And that they have more important patients with real conditions that require their time and attention. I emphasize with the doctors' overburdening due to how the medical system is structured in my country (Germany). What I can't stand is when they become patronizing at the same time, when they waste time and resources circling around the problem instead of getting to a solution.
A new study by researchers in London 🇬🇧: it's not just 'brain fog'- sufferers tested had lower IQs. I have lost most of my hair, can't taste food, can't sleep at night, can barely shuffle around the apartment, & struggle to think clearly. I have to write detailed lists of things to do, eg 'make a cheese sandwich at noon, put lots of salt & pepper & hot mustard on it'. I no longer heat food on top of the stove after burning a pan & setting off the smoke alarm. I'm depressed & discouraged & certainly feel stupid 🤷😭.
@@claudia1423 I hope you got to enjoy that gin & that you get to be with your husband - You are absolutely not stupid - unimaginable suffering & nothing pathological about what you are feeling in such a dire situation x
Vitamin B3 niacin with flush and melatonin. This will seem strange but it wont cost you much and is easily available, try nicotine gum. Going into the science will take too long and giving you this advice wont cause you any harm.
Gez, thanks again for another brilliant video with powerful speakers. There’s the shock of getting post-viral illness and when we are at our most vulnerable, then there’s the double whammy and mental torture of trying to prove it! After 21 years with M.E., I still can’t decide if the physical suffering or the disbelief brings the most distress, as both are equally horrendous. It’s beyond shocking that 100,000s with Long Covid, have now joined the ranks of M.E. patients, whose lives are on hold until science catches up.
Hear, hear! Wonderful conversation. I'm 45 and have learned my lesson with " medical professionals". You have to fight for yourself and your loved ones. Doctors,in general, don't really care. I even met some angels with compassion and sympathy. That has been a blessing. If a doctor can't say "I don't know" and just say it's your psyche, without a good explanation, go and never come there again. A family member is battling a very rare cancer, even her was told in the beginning it was in her psyche. So stand up for yourself!
I've had Long Covid symptoms since 1991, after contracting an undiagnosed tropical disease (most likely to have been Hemorrhagic Dengue Fever) and was then diagnosed with ME/CFS. After 30 years of mistreatment - which has gone as far as abuse on many occasions - from the medical community, I am now mostly bed bound. I no longer expect any help from doctors and am happy to find someone who will just fill my scripts and leave me alone. I took it personally when I was treated badly for the first two decades, but now my perspective has changed. YOU ARE NOW WITHIN A GROUP OF MARGINALIZED PEOPLE. This means that people can get away with treating you however they want, and they know it. If someone has a tendency towards misogyny, and you're female, then that's going to be what you get - and so on. THE BOTTOM LINE IS FINANCIAL. Doctors don't have the time to figure out and help. The system is set up for tests, pills, and surgery. You don't fit in their boxes. You take up too much time. This makes YOU difficult. You are a difficult patient - and it's NOT that you have a difficult illness. And you're going to continue to get one of their excuses that will allow them to excuse you. Eventually, you'll be happy to find someone who will just take care of your basic needs without any harassment. Sorry for the bad news everyone. Oh, and if you're wondering what I do when developing something life threatening? I suffer and am prepared to die. (I developed an Intussusception 2012, it took me over 5 years to get it correctly diagnosed - because a doctor from a prestigious hospital "downplayed me" which resulted in a misdiagnosis - and then no other doctor would consider any other diagnosis... it's supposed to kill you without surgery... I'm living with it... I'm sorry people, but you just have no clue what you're in for)
I’m a fellow ME person and I just wanted to say how very sorry I am to read about your experiences. We both know that variations of your story are repeated time & time again. Since I moved to Cyprus, I’ve decided against asking ME being recorded on my health record here, for reasons you have just demonstrated. I do have hope though, that because such a large number of people are presenting at one time with this kind of syndrome, that we will finally, finally see a change of attitude in the medical profession and that research money will at last be invested in this area. I hope and pray that things will change for the better for you. 🙏🏼💕
@@ysbyttybedbug Thank you, Kay, for responding in such a kind and understanding way. I felt worried/bad after writing this because of how negative it was. I used to be such an extremely upbeat and positive person (my father referred to me as a "celebrant" and I'd heard "Pollyanna" while growing up on more than one occasion) and, if you can believe it, I've still retained some of that - but not when it comes to doctors or getting medical care - it can't be anything other than dark. What I've been thinking since I wrote this, is that people need to be warned about the specific things that can happen, so that they can be prepared, and then possibly protect themselves. For example, that they're going to be at a much higher risk for having medical mistakes made - which can range from misdiagnoses that they can't correct (which will then follow them in their medical records, to each new doctor, so that the symptoms of the wrong diagnosis are responded to - while the symptoms of the real one are ignored/denied - and you're just left to suffer with them, no matter how serious they might be) to medical mistakes during surgery (because the doctor will use the time they have with you, to catch up in their schedule, if they're behind... or they'll even leave you with residents, during surgery, to go give a speech, which is what happened to me). What they need to understand is that they're going to be labeled, and that this label will follow them around, in so many different and very ugly unexpected ways. And, yes, they may find a few doctors who care, who try to help, but that won't change anything in their records - they will remain being the difficult patient, the patient that doesn't know what they're talking about, the patient that needs to be politely (or not so politely) pushed away. I JUST HOPE ALL THESE NEW PEOPLE DON'T HAVE TO LEARN THE HARD WAY. But, one thing they do have that we didn't is numbers, and I really hope that helps them... but I'm not seeing that. They're starting out as we all did - feeling ignored, dismissed, not taken seriously and THAT'S HOW IT STARTS - main point being is that it IS just the beginning, and they need to learn/understand what can happen afterwards. I wish I could suggest a book or some other resource. Do you have one you can recommend? Anyway, yes, I understand why you don't tell them anymore that you have ME/CFS - most of the time I don't either. You have to do that to get better medical care. My heart goes out to you, too. Oh, and hey, you're in Cyprus? I lived in Greece for many years... so Yassou! Love to you, Katy
@@katy4763 wow, yassou! It’s a small world 🇬🇷🇨🇾. Don’t feel bad about sharing your negative experiences, it’s good to forewarn people and I thought the 2nd video in this series gave some good suggestions on that score. I’m also very hopeful that the new NICE guidelines, due to be published on 18th August, will do away with GET/CBT once and for all - the draft guidelines were really good. You may want to have a look at the ME Association’s website and, if you are on Facebook, follow them for up-to-date info. The website has loads of useful stuff and they produce something called ‘the purple book’ that they will send to your GP for free, it contains everything they need to know regarding latest research, treatments etc. You can download a sample from Kindle for free, if you want to see what it’s about. I plan on printing off the NICE guidelines once they’re published, and taking them with me to any medical appointments (I think my GP’s already got the message!!). If I then get any negative or dismissive comments, I can brandish them as evidence! I know what you mean about being, at heart, an up-beat person. Me, too! I’m a Christian, so find my peace and security in Jesus, but that doesn’t mean I don’t have my dark times, especially when in the middle of a long crash or I’m having issues with the medical community. Overall, though, I have learned to be happy and at peace with my quiet life. I trust the same is true for you, too, and for those people who don’t experience full recovery from long-Covid. Much love xxx PS I was especially shocked to hear about your surgeon leaving mid-operation to make a speech!! PPS Regarding the long-Covid sufferers, what they have, which we didn’t in our early days, is access to social media/the internet, which allows them to be much better informed (and therefore armed!). People like Gez are doing an absolutely amazing job. Plus bio markers are beginning to be found. So I’m hopeful that things are finally changing. 🙂
@@ysbyttybedbug Yassou Kay! What a nice surprise to find your message! And it's so informative - so truly thanks! You may be thinking I'm from Europe, but actually, I'm in California! Our medical system is much much worse than yours! But I WILL follow what
My heart goes out to all who are being wrongly accused by their medical professionals of anxiety when they have ME/CFS or Long Covid. The heart doctor who I went to evaluate my sudden BP issues/tachycardia after my bout with covid accused me of "anxiety". All that did was made me stop seeing my doctors because I knew they were unable/unwilling to actually try to help me. It's so shocking that this is happening to so many of us and even doctors too.
the miracle mineral solution ends all post viral conditions in less than 12 hours,they all have a single cause , a weak immune system that cant expel dead viral debris from the system,the miracle mineral solution will clear all the dead viral debris out of your system,the symptoms all vanish the immune system calms down and the energy levels rise then you take a protocol to fix your weak immune system,message me and i will type out the details for you
@@Beekind799 I'll pass on the snake oil, thank you. What helps post-illness recovery is proper rest for months, pacing, lack of stress, and healthy eating with the proper vitamins & minerals. Sometimes medicines are needed too. Our culture seems to have forgotten everything but the medicine and expects people to recover from serious illnesses in only a few days.
It's so true what you said about medical fraternity. Being a doctor It's surprising to me. I get mocked at by my colleagues all the time. It's traumatic to say the least. Hope this attitude would change.
@@vinayagowda7948 So sorry that your colleagues lack empathy and listening abilities. I think those skills will become more & more not just important but required in the near future of medicine. Meanwhile my sincere wishes to you for a quick and complete recovery from long covid. I've had it for almost a year and 1/2 now. It's been a slow process but I've been seeing steady improvements. It's required making changes to my life.
It's so frustrating! I have anxiety too. When doctors say "it's just anxiety", that means they think my treatment isn't working. So they should have to work with me to develop a new plan. But no. They just don't want to do work or admit not knowing so they say anxiety to get it off their plate. Such a disgusting tactic.
Many thanks for the video! This is a regular problem with the medical profession, and especially for me/cfs sufferers. Good you've made a document/ary that can relieve sufferers' grief a bit, and be a document they can refer to. Very kind and good!
Thank you Kelly, for sharing your story. It shows great courage and really, it reflects other people's arrogance. I am sorry you had to go through this. Horrific and yes, sadly, you are not alone. Thank you to all the professionals on the panel for speaking up especially when you have had your own health struggles. It may seem like nothing, but having professionals - doctors and those connected to the psy-professions - speaking up, gives those of us who are 'lay' people a voice, and we aren't alone and nor are we crazy. Thank you for using your position to highlight abusive practices and normalised but harmful narratives in the wider health domain. It is needed and appreciated.
The first time a doctor ever admitted that I have EDS (Ehler’s Danlos Syndrome) was when a pulmonologist was deflecting from admitting I have long Covid. 🤪 He also tried to send me to the ER because I was crying - because I had been having low oxygen levels for months and begging him for oxygen and still wasn’t being taken seriously. And many other horrifying experiences. So glad that you all have addressed this. Thank you. 💗
I should be sorry that so many other people have had this as bad or even worse than me - but it is such a relief to know absolutely that 'it is not in my head'. I am a white 60 year old RP speaking male and I have had a taste of all the attitudes mentioned here. I have had ME/CFS for decades too. I didn't think it could be much worse, but, now I know it could be - if I was a woman ! They decided I had Thyroid cancer rather than admit they didn't know what Covid can do to us. It took me six months to get that diagnosis put to one side.
My experience has been similar to yours thanks for your validation as a man regarding the misogyny that makes all of this so much worse. As if it needed to be made worse.😓
Thank you 🙏 thank you 🙏 thank you 🙏 Fot all you long Covid videos! I saw your first video on Dysautonomia/POTS & MCAS. When my cardiologist told me she thought I had POTS, I then started researching the condition. It lead me to your videos and MCAS. I’ve been testing for EVERYTHING, even a rare pheo/paraganglioma tumor. All labs and scans were ALWAYS normal. I told my primary care doctor to refer me to an allergist/immunologist for an MCAS work up. I told him that POTS & MCAS tend to coexist, so he sent over my referral. The allergist/immunologist knew I was coming in for Mast Cell Activation Syndrome. He reviewed my other labs and ordered me some more. My 24 hour urine leukotriene was elevated, I was symptomatic and responding to treatment which indicates MCAS. Most of my symptoms subsided, except for my extreme tachycardia, body fatigue, breathlessness and hives/Dermatographia. He decided to add Xolair treatment to help with the hives and in hope it would help my MCAS overall. Three days after my first injections I was able to breathe with ease and the heaviness in my chest was completely gone. My tachycardia greatly improved and so did my body fatigue/heaviness. Not one of my specialists considered that I may have had inflammation in my lungs. I never even considered that it was an issue with my lungs. At every doctor appointment my lungs sounded clear and my oxygen level was always normal. I never felt like I couldn’t breathe, it felt more like I was breathing heavy due to my tachycardia. My allergist/immunologist actually feels a little stupid for not testing my lungs at my first appointment, therefore I don’t have a baseline. Honestly I don’t care because I can breathe great, my energy is back and my head now feels clear. Again, thank you 🙏 thank you 🙏 thank you 🙏. For the first time since March 2020 I feel normal again. Actually, I’m better than normal because I’m also so very grateful 😊 If it wasn’t for your videos and others like yours I would have never known about these conditions. I would have never known to research them and present what I learned to my doctors. You helped me advocate for myself. I hope 🤞 others who watch these videos are able to find answers like I did. We all deserve to be validated, know what’s wrong and get treatment so they can live again! 😁
I was diagnosed with M.E. in early 2011 after repeated and worsening illness extending from having had Swine Flu in late 2009. I've had a mixed response over the years from doctors, but find the lack of funding and interest in research has only compounded the attitudes of the less informed medical professionals. Those who believe M.E. is psychological / that the M.E. patient is malingering etc not only do us a huge disservice, but such attitudes can also lead to additional illnesses being missed too. I have never been one to rush to the GP, and since becoming ill with M.E., am even less likely to do so. As well as the increase in symptoms caused by leaving the house, I am very aware that any new symptoms have the potential to be linked to the M.E., and so tend to wait before booking a GP appointment and allowing me to evaluate things for myself first. In 2015 I began to experience a range of 'odd' symptoms (more pronounced veins around shoulders and upper chest; and a puffiness in my face each morning that would subside as the day progressed). I waited 3-4 weeks before seeking the opinion of my then GP, by which point the facial swelling was becoming more pronounced. In respect of the pronounced veins, I was told that I must have 'pulled something', despite having no pain or recollection of having done so. The facial swelling I was told was likely an allergy - something I had considered initially, but dismissed after carefully checking that there was no link to dietary or environmental change, and that there was no difference with the use of antihistamines. I was dismissed on 3 separate occasions from the GP surgery - I kept returning as the facial swelling was becoming alarmingly worse and I had also discovered a small lump in the collarbone area of my neck. The last time I was dismissed by the GP, she actually told me NOT to return for at least 4 weeks. She basically accused me of wasting her time! I believe her attitude was clouded by a deep-seated belief that as someone with a diagnosis of 'Chronic Fatigue Syndrome', I was obviously a hysteric! Thankfully I knew I was not overreacting and promptly registered at another GP surgery nearby. My first appointment with one of my new GP's was like night and day to what I describe above. She immediately started to make arrangements for various tests. However, by that time my symptoms were progressing rapidly and I ended up in A&E within 2 days of seeing my new GP, as by this time I was struggling to breathe. I was admitted to hospital and tests revealed that I had a high grade Non Hodgkin's Lymphoma, further complicated by a substantial pericardial effusion (fluid around the heart) and less serious but significant pleural effusion (fluid on the lung). My condition on admission was considered unstable and consultants did not feel it safe for me to be transported to a nearby hospital for a PET scan at that time. The symptoms that had been so readily dismissed several times by the GP were apparently text book and definitely warranted further investigation. I am lucky - I was successfully treated and have been in remission for 5 years now. It could have been so much worse. My story demonstrates the dangers posed by psychologisation of illness. It is bad enough to be on the receiving end of disbelief when you are suffering from any illness, something I have faced many times when seeking help or advice for worsening M.E. symptoms,. However when doctors see a diagnosis (worse still a diagnosis of an illness they don't believe in) rather than a patient, and their preconceptions cloud their judgement, critical errors can be made.
I desperately want to cry because I’m so upset that I can’t do stuff, but I’m too tired to cry. I think my body is so broken at this point I’m not sure it can even make tears. My mum and sister are downstairs cooking stuff and I can’t get out of bed to join them. I am 17 and I think I’m going to spend the rest of my life miserable. There is so much I want to do.
It’s so hard Eleanor - I’m so sorry to hear you’re struggling so much. Rest as much as you can and don’t feel you’re going to spend forever like this - you won’t.
Today I'm 100 percent symptom free from long haul COVID-19. Infected in 2019, I have gleaned so much good advice and reinforcement from watching the interviews on the YT channel RUN-DMC. I identify with the host, and appreciate his investigative nature regarding his challenges with long haul COVID-19. To those in this interview, my heart goes out to you, I know what it's like dealing with the "symptom du' jour" cornucopia caused by a COVID-19 "hijacked" autoimmune system. I give his channel a huge amount of credit in helping find solutions that have worked for me. It was through this channel I realized that I was dealing with a compromised auto immune system, NAD+ deficiency, and mitochondria dysfunction. Regarding my dismissive healthcare professional colleagues, I try not to be angry, but I felt like the seven specialists and $20K in tests were little more than a money grab. I'll be changing providers in September to one that has a long haul COVID-19 modality.
Gez, I’ve thanked you a lot, but once again loved this, especially after seeing my medical report from a Revered Professor of Cardiology who attributed potential Afib, AV block, and clearly distended Jugular veins as “Acute Anxiety” This has to stop it’s almost Pythonesque in absurdity regarding their response to patients 🤦🏻♂️
@@RUNDMC1 It’s given me a ton of material for my future stand up comedy career at least - but terrifying lack of human empathy shown even if they think it’s merely “anxiety” … oh what you mean a debilitating mental illness Dr. Gotta compliment your on your consistency in response Gez not sure where you find the time mate 😂😂🤷🏻♂️
all post viral conditions can be ended in less than 12 hours ,drink the miracle mineral solution in less than 12 hours it will clear the dead viral debris out of your system,the root cause of these conditions low atp levels coming from low glutathione levels,messag me and i will type out the protocol for you in days you will be bursting with energy,you cant fix a condition if you dont understand what causes it,forget idiot doctors they cant help
Great panel, everyone brilliant (Prof. Huges particoularly outstanding). Thank you Gez for setting this up to raise much needed awareness about post-viral diseases.
prof huges is a fool ,all post viral conditions have a single cause,dead viral debris in the system what the weak immune system cant expel,there end of mystery ,drink the miracle mineral solution it ends all post viral conditions in less than 12 hours then they takea protocol to address the low atp levels coming from low glutathione levels
@@frcfun8328 oh dee dums ,have you got your knickers ina twist oh dear ,i heal post viral conditions and chronic fatigue conditions on a daily basis i also give them the knowledge on what doctors actually are,many of them spit on the doctors its great i explain to them what scum doctors are
Brilliant to see this being talked about, it’s about time. But… is there some irony in that it is a discussion that focuses hugely on medical misogyny and deep ingrained sexism in which the predominant voices we hear from are, yet again, men!
I have PCOS , VVS, IBS and non-diabetic Reacive Hypoglcemia, all of which are dismissed mostly by the medical professionals and mainly treated as psychological issues, which is simply not an accurate diagnosis nor treatment and really isn't good enough.. I have struggled for years to get help controlling these conditions/diseases to the point where i have given up. I totally sympathise with all of you that suffer with Long Covid , it's truly awful. I hope you cam eventually get some help and support.
I have VVS, bouts of hypoglycemia, MCAS & dysautonomia symptoms. As far as the hypoglycemia goes, years ago I tried cutting sat fat to improve my overall health and found reduction in hypoglycemia attacks. Later I did 23andme and found I am a carrier for a fatty acid oxidation disorder gene (MCAD deficiency). My father had an unexplained bout of rhabdomyolysis during the course of multiple system atrophy - rhabdo is not associated with MSA, but his doctors attributed it to MSA (he was not on statins). So I think fatty acid metabolism is an issue for me. I had been taking tributyrin for a few months & dropped it recently - hypo came back shortly after. Tributyrin converts to butyrate which increases PPAR alpha activity. I also take ubiquinol, ALCAR and carnitine fumarate. For VVS the best thing for me is topical estradiol (note that estriol and premarin did not work). I also use Eucrisa for eczema in that area (yeah my life sucks) and I think it also helps. It seems like MUFAs could potentially exacerbate PCOS, based on experimental studies (not human, but a human study did find higher circulating MUFA in PCOS than control). MUFA increases androgen production and can reduce apoptosis (follicular atresia is diminished in PCOS). So my suggestion would be to carefully monitor symptoms in relation to dietary fats and see if there are any trends. MUFA is generally thought of as being very healthful. I use the cronometer app to track my nutrient intakes - kind of a pain in the rear, but for me, it's been worth it. Exercise is really important for me - when I can do it, that is. ~ And I've been told my VVS, etc was due to trauma. Except the health issues started first, but I think causality (and rationality) is beyond some people ...
@@rhyothemisprinceps1617 Thank you so much for reply. I am so sorry that you're going through so much. I have super specific dietary restrictions as I also have malabsorption, intolerance to sugar and fat above 5g/100g and lactose intolerance. It's a royal pain in the rear as you say. Exercise is very important yes I agree, as is salt intake and fluids so I try and keep on top of those. The smallest thing can set off a hypo if I'm not careful and don't balance my meal with enough protein. But then I could eat the same the next day and be fine so no rhyme or reason 🤷♀️ I'm unsure of what some of the things you said mean , so I'm off to Google. ☺️🌻
@@punkyfish1977 I should mention that hypoglycemia can be caused by insulin autoimmunity - aka Hirata Disease. It can be induced by alpha lipoic acid and reverses when ALA is discontinued. I tried ALA years ago and did have notable increase in hypoglycemia attacks which stopped after I stopped taking it - and not placebo since I had no idea this even existed - I though ALA would improve mitochondrial function. Not sure what all the connections are between fatty acid metabolism and autoimmunity, but 'immunometabolism' is a hot research topic right now and I hope it bears fruit. Oh, and I also take PQQ and think I think it helps with microcirculation - pink nail beds and gums, goes well with CoQ10. Pomegranate pith / extract can do the same thing (increase new mitochondria through PGC1-alpha (provided one has the right gut bacteria to convert ellagitannin to urolithin A).
This is EXACTLY how I feel!! 😢 No one believes me!! I'm referring to the first young lady that spoke, I am still going through this by myself, no one cares...
Thank you Kelly, your story is touching. i had a very very similar experience. I have a vet background and also was dismissed by several physicians. I barely had the strength to look for help anymore and at a certain point gave up with terrible scary symptoms. I was very fedup by the medix and the way they did not do their work properly. I begged for broader tests as i suspected a problem with the immunesystem but was told i should see a psychiatrist.
As someone with an ongoing addiction and long covid, I havent even TRIED to get signed off sick as I have just presumed doctors will presume either my symptoms are directly caused by drugs or I wish to be signed off sick due to complications addiction causes in ones life. And yet Im absolutely sure this is long covid. The lethargy is unlike anything I have EVER experienced before. I consider myself to be disabled now and yet Im not even going to mention long covid to my doctor etc. Its a shame, we should be believed when we have very serious symptoms like this.
How groundbreaking it would be if medical practitioners would own their humility and focus on the physiology… doesn’t make sense for them to be making psychiatric diagnosis when they can’t find a bio marker. Absolute nonsense. The more you know, the more you know you don’t know, and it’s a pity how toxic the culture is in medical training. When you see how doctors and nurses are treated you understand a little bit about how they treat patients, they’re undervalued and over worked and don’t get enough time, patience, or empathy for how hard they work. But to grow that empathy for their patients will be their mission. I completely understand that the human experience is more than just the meat body, but right now medicine is about the meat body so they should understand the limits of that and be open to the broader human experience.
12 months in...Daily fatigue, Joint pains and lungs still feel like crap, can't take a deep breath and feel like breathing through a straw. CT scan with contrast all clear, 4 pulmonary function tests all good, walking stress test good, cardiology tests and scans all good, countless blood works all good and it's not that my doctors don't trust me, especially my pulmonologist, the thing is they don't know what more to do to help me. I've been told it's Post Viral Syndrome and that it should get better with time and to do breathing exercises and light cardio.
It does test you to the limits , I know it’s very very difficult to be patient especially on bad days 🥺 but the sun will shine again my friend 😁👍I wish you all the best with your continued recovery 😁
@@richardmock3198 Thank you so much for the kind words and the encouragement. Some days can be tough as you keep thinking will you ever recover or stay like this forever, but I'm still sane 😁 and managing.
you have dead viral debris in your system what your weak immune system cant expel,thats what a post viral condition is ,if you drink the miracle mineral solution in less than 12 hours it will clear all the dead viral debris out of your system,you will feel so much better,the cost of the miracle 7.69 uk pounds ,all the pain ended in less than 12 hours it will sort that breathing stuff out too,my brother was like you he drank the mms in less than 12 hours he was walking up and down the stairs taking deep breaths,if you want details message me i will type it out and the protocol you have to take to address the root cause of your condition shit food,low atp levels coming from low glutathione levels,its a nutritional deficiency condition, thats why doctors cant help they have no training on nutrition or the 5 box immune system ,they are like mechanics that dont know anything about the bloody engine,i cant stand them,
I wanted to say that I'm feeling pretty good now, maybe a 9/10 most of the time, started gym again and no problem there. Sleep is still not perfect like before but my life changed in better. I got a new girlfriend and she is the best thing that happend for me in my entire life. Hope you are doing better too!
At this point, everyone should sign up for long covid clinic's as soon as they know they are positive because the waiting list is already a mile long!!
Once again Thank you 👏👏👏I can totally identify with what as been said. When I first fell into my long covid relapse I asked a male GP if he thought it could be long covid. He was very rude and arrogant towards me . He stated that because I had long covid last year that was LAST YEAR not this year . I came off the phone from him and in floods of tears. I sat with how I had been treated by him for a couple of days however, I did lodge a complaint with my GP practice regarding his lack of empathy , sympathy and his overall attitude. They subsequently looked into my complaint- unfortunately the GP was working from home on the day of the incident therefore they couldn't retrieve the phone call - how convenient for him . It turned out that he is a partner of the surgery too 😕. Fabulous podcast I can't wait for your next one 👏👏👏
@@RUNDMC1 It's such a shame that a certain number of GP's are so dismissive. I am a big believer in Karma though. Thank you for shining alight on all things covid Gez - I'm really looking forward to your next podcast - you truly are a life raft for all of us out here in the storm that is covid - Thank you 👏👏👏
Right now Dr's need to learn to listen to the patients symptoms and how they feel and not only rely on clinical results and tests. It's most frustrating and shocking when Dr's tell you what you are feeling instead of listening to you as the patient
doctors have no training on nutrition or the 5 box immune system,all chronic fatigue conditions and all post viral conditions including long covid have a single root cause low glutathione levels pulling down the critical atp levels ,doctors have no training on nutrition or the 5 box immune system thats why they cant diagnose any of these conditions whose root cause is a nutritional deficiency on the bodies foundation for health the glutathione,low er the glutathione levels if a virus comes your immune system wont have the fuel to work it will spit cytokine storms they can kill you not the virus the response of your own weak immune system can kill you ,doctors cannot diagnose what they have no training in they are useless symptom treaters , doctors are like mechanics who know nothing about the engine,i heal these conditions on a daily basis,dead viral debris in the system is what a post viral condition is,thats what keeps them stuck in sickness,drink the miracle mineral solution in less than 12 hours all the dead viral debris will be cleared out of the system and that ends the post viral condition,chronic fatigue conditions is a nutritional deficiency caused by low glutathione levels these conditions are easily overcome and the body regains health ,dead viral debris in your system wont show up in any test thats why doctors think its all in your head,oh i cant stand them ,patients need to start asking the useless doctors the right questions,like hey doctor what is the bodies foundation for health,they will look at you blank i hope this message explains why the useless doctors cant diagnose the cause of these conditions,they are not health experts they will watch you suffer ,go on ebay type in mineral solution set scroll down look for 2 slim plastic bottles witha yellow and green cap it says gold mins on the front 2 x 33ml cost 7.69 uk pounds put 6 drops of sodium solution in the bottom of a glass add 6 drops of citric activator let it mix for 20 seconds it goes dark now fill the glass up with water and drink it slowly on a totally empty stomache in less than 12 hours all the dead viral debris will be gone the symptoms all vanish the immune system calms down the energy levels rise then take this to address the reason your immune system spits out cytokine storms low atp levels coming from low glutathione levels take with food 2 x 600mg caps n acetyl cystine morn/eve - 1000mg caps cod liver oil and fish oil morn only - 1 kelp tablet morn only - 200 mcg selenium morn/eve - 100mg magnesium citrate morn/eve - 30mg zinc morn only - 2 x 750mg caps beef liver extract morn/eve - 1500mg combined caplet quercetin/bromelain morn/eve this protocol is complete if you do whats here in less than ten days you will be bursting with energy,i heal doctors with long covid i have even healed a professor on the immune system with long covid,i told him you are not a real scientist ,these doctors you are seeing will destroy your health ,stay away from them the knowledge to regain your health is in this message ,the dead viral debris in your system is causing all your insane symptoms mms will clear all the dead viral debris out in less than 12 hours and you will say itsa miracle
@@Beekind799 thanks Michael. I really appreciate your input and will give it a try. I promise you iv been on every conventional medication over the last 11 months and it just suppresses the symptoms, which comes back a few days later. I'm from SA so will see if I can access these meds you mentioned. Thanks
So utterly thrilled to watch this discussion. I have too experienced awful primary care responses in the same hospital I'd been proud to work in years before as RGN. Treated like a complete nutcase. Refused x-ray etc as clearly anxiety despite presenting on crutches distressed and I believe able to be concise and clear in my history given. Left in agony. Month's later eventually scanned and found bilateral stress fractures to both tibia.....
I believe we will not make headway without attacking the system, the very one that allows doctors to minimize illnesses, not update their knowledge according to science. Most of all, teach doctors to respect and listen first instead of insulting patients. I suggest that patients take a recording device to every doctor appointment to gather evidence of their knowledge or lack of or even misogyny.
Long covid is certainly not in your head. This is so frustrating when we hear that. I had my second dose of Moderna 3 weeks ago and it in the following hours gave me cough and this is still there, along with a mild return of brain fog and fatigue. I really really hope it will go away, and I started back to take the vitamins and minerals.
I have a nagging cough since getting 1st Moderna. I thought it was from the air quality alert we've been under here in Ontario 🇨🇦 because of the smoke from all the wildfires! What a crazy world!
@@claudia1423 Hi from Quebec, Canada! I'm in the greater Montreal area and the air quality was definitely not helping with the cough, especially in the middle of last week! For me, the first Moderna vaccine was such a relief and I tought that I was fully cured form long covid. But, I took some vacation and it actually took more energy than I tought I had, which caused quite a relapse. Second Moderna shot has been rough on me. I hope it will get better for me and for everyone!
@@alexandrecouture2462 🙋 Alexandre! Getting my 2nd Moderna on Wednesday & I'm a bit nervous. I still have muscle aches from the 1st. If you get your strength back maybe you can 🛶 down the St. Lawrence to Kingston with some Poutine🧀🍟. Gin & tonic🥂 or 🍻 is on me! Claudia
Fascinating stuff. It’s quite a bit ironic it takes all these men speaking up to bring to light long Covid and other post viral illness, but in any case a thousand times thanks, Gez! It’s true when we have a voice we need to use it, just like other forms of discrimination. So much gratitude for your series on LC.
@@RUNDMC1 but we barely heard from them in comparison to the men - who did most of the explaining about what’s going on and the theories behind it. Bloody great discussion though, and much needed. Just felt like the power balance was off a bit. 🤷♀️
Another great topic. One very frustrating and expensive effect of not being believed by doctors in addition to the psychological toll and lack of medical help is that the visit doesn't get coded as COVID, which last year in the US was 100% covered by some insurance. Without proper coding, it was a nightmare in itself of repeated phone calls and paperwork trying to get insurance to pay. Ultimately, patients in many cases (as happened to me) end up with very large medical bills that should have been covered.
That's me. I was on short term disability for 6 months. Cigna had approved all my doctor visits. When my job got tired of me taking too long they let me go and the insurance company denied all my previous visits and charged me $12,000 worth of medical bills. Here i am 13 months later with chronic fatigue, insomnia, brain fog, PTSD and depression. I'm in the process of selling all my belongings to pay rent and eventually down to my car. Probably be homeless by summer 2022 if i can't fine the energy to get back to work. I have PTSD from this thing. I stayed in a dark room suffering for a whole year, terrified of outside and the vax. I don't want to feel like i did the 1st 9 months of this.
16 months later, 2 trips from Palm Beach to Rochester MN to Mayo Clinic (thank God for Mayo Clinic), a major lung hemorrhage, 2 hospitalizations locally, 3 vaccinations of Pfizer-BioNTech, and I am still symptomatic. I have a pulmonologist, oncologist, endocrinologist, cardiologist, you name it, if it has an “ist” at the end, I have one. Thanks to Mayo Clinic, I have been diagnosed as having Bronchectasis from the Covid in March 2020, and am being treated for that. However, no one can advise what to do to get my strength back, have my hands stop dropping things and my feet feel like hot coals while the rest of me shivers…………To quote my pulmonologist yesterday, “no one really knows how to treat those symptoms”. Due to allergies, I cannot take a lot of medicines, so I cope with it, but in the back of my mind, I am always saying, I just want my old life back.
I had one senior consultant ask if I wasn't sure my acute breathlessness was down to being a ' bit weighty ', cos all the tests revealed nothing. That was until he saw what a short walk around the department did to me. His notes were still next to useless in detail for follow up.
After sixteen months with Long Covid my positive mental attitude has been waneing and I have lately wondered if my expectations are somehow causing all of these horrible symptoms, despite my PMA? Am I making myself ill? Taking on the responsibility for it by thinking it's my fault gets me down. Thank you for this reality check, this reminder. Of course it's a physical illness! 💥💥💥💥
Cheri of every M.E and long covid patient I've met there are generally huge lists we have of stuff we are desperate to do but our bodies do not allow it. We have drive to do all the things but the lack of quality of life adjustments due to the stigma of post viral conditions make it even harder. We often swim against the tide. Some of the theory underpinning these psych theories is deeply ableist and contrary to lived experience of chronically ill people. 'Secondary gains' are absurd as a concept because our reality is people do not have endless sympathy for us, we have to fight to get any support through deeply dehumanising policies based in beliefs such as this. Be kind to yourself. Don't allow the gaslighting behaviour diminish your ability to express yourself. This entire issue is unfair for those with mental illnesses too. It wastes much needed mental health resources during a period of drastic cuts to services and causes avoidable damage to people with post viral illnesses which ends up costing the NHS more anyway.
@@RUNDMC1 thanks, I have watched it, I think! I have had the attitude of a champ, am really proud of how I have handled this... I didn't want to do the Gupta Programme because he refers to "the condition" and that made me feel discouraged. I have honestly felt that I am recovering from an illness all along, not that I have a condition, which sounds really static. I think knowing about this programme and the Lightning Process, and reading about them on Long Covid groups has actually been unhelpful for me. I have questioned my own mental wellness because of them, and because of the medical gaslighting that I got early on, and because "friends" have disbelieved me, and disappeared. I believe that my autonomic nervous system has physically taken a huge hit, and I am physically recovering. I remain hopeful and positive, and pace, and find all the joy that I can in each day. I think time is what we need.
@@sparklingblackrose3 thank you for your encouragement! I will hang on to what I know to be true. Agree, it is hard to name any secondary gains, except the strength I have found within myself.
Cheri, I find that whether it was from the infection or the downstream effects, there is a drain on serotonin that seems to be common in many people with LC. I think mine has improved with niacin supplementation (along with energy and sleep quality).
Welcome to the real world doctor. We are all being dismissed. Nearly two years and counting. No help, no assessment, no scan, no assistance. Just an employer waiting with a loaded gun.
Thank you to the panel. Some of the listeners might find an international forum 'Science for ME' useful. We discuss news and research related to ME/CFS and related illnesses such as Long Covid. It's a good way to start to understand advocacy issues, and to learn how to critically analyse research. There is also support from people also living with these difficult illnesses.
Such a brilliant discussion. Thank you Gez and Asad - it feels so validating for those of us with Long Covid (and no doubt ME/CFS) to hear such wise reflections
Every single panelist said something worth framing! If these ideas permeate across the med profession surely we’ll already be in a far better place. On the topic of why see doctors not in a position to immediately help… Validation is nice, but there’s also the hope that in aggregate patients are educating doctors, that somehow this knowledge trickles upwards until someone up the hierarchy says: “You know we’ve got millions of people suffering and we can’t treat them. We really ought to fund this and turn up some answers.” Of course, this doesn’t work if doctors doubt the reality of patients’ serious years-/decades-long chronic illness until the very moment they develop it themselves. It also doesn’t work if no one at the top is listening or in a position to influence the funding of biomedical research. But if not, why not?
@@Winstoncb I agree great edit. Esp of my interview with Kelly…it was a mess pre-edit and I wondered how Gez would ever get it to the screen. But this man can do anything. And great feedback by the way, thanks.
my research clearly shows me what post viral conditions are caused by,their weak immune system low on atp cannot expel dead viral debris from the system,tahts what keeps them sick and thats what a post viral condition is ,i heal these conditions ona daily basis
I've given up on medical care. If there were not barriers to self treatment (needing drs to order certain tests and to get Rx's) I would never bother with going to the doctor. I'm in the US and once upon a time I was all for single payer healthcare, but now I might be going full on libertarian. I still think there needs to be a way to provide healthcare for everyone, but I don't know how to to that and avoid this type of situation ...
I have lost most of my faith and respect for the medical community since having covid and now long covid. Thank you to the docs who are taking this seriously and not blaming the patient for being sick. I am an attorney by trade (disabled though) and worked with docs in my career and had the utmost respect for them. Fast forward to the present: i have been told that the dr couldnt diagnose me with covid bc he would get in trouble with the county gvt; been told that covid and long covid were "made up by the liberal media snd democrats" and it was impossible for kids to get covid and again, that the liberal media is making this up (WHAT???); told it was depression over and over again (and specifically it was a "new" kind of depression that had new symptoms to include chest pain and trouble breathing); been diagnosed with many different things that i do not actually have to include pancreatitis, lymes disease, and my favorite one, gallstones( i had my gallbladder taken out 15 years ago); and many other troubling things. I don't know how to actually treat with a good covid specialist to help guide me bc I live in a smaller community and the specialists wont see me bc i never had a positive covid test - i had it in March 2020. Ahhhhhhhhh! I am very grateful for these doctors, Gez, and the covid sufferers online. Keep up the good work!!!
Wonderful panel. Thank you! I totally relate to Dr Nina regarding senior specialists with dismissive behaviour regarding my autoimmune illnesses and ME/CFS diagnosis. I am now consulting with a mental health group to help me work through all the hopelessness and anger I have built up. I suffer so much and still struggle to work part time but I'm so tired of the constant malaise and brush-off treatment I receive. I deeply appreciate the NHS but I wonder if I purchase private healthcare if I'd receive better care?
drink the miracle mineral solution it ends all post viral conditions in less than 12 hours ,doctors donot know what causes these conditions thats why they cant heal them,i heal all these kind of conditions ona daily basis message me and i will type out the pprotocol
Not likely. Finding an Integrative Medicine Doctor or Functional Medicine Dr who treats these conditions is the best chance for effective testing and appropriate treatment. An exercise plan is never the response that you should hear from the Medical Professional, it shows their lack of real world treatment and experience with these Disorders.
@@wildhorses6817 turn to a biological systems engineer fully trained on nutrition and the 5 box immune system,healing these kind of conditions is easy for me .doctors have no traininng on nutrition or the 5 box immune system,they cant help
drink the miracle mineral solution in les than 12 hours the dead viral debris in your system will be cleared out and thats the end of the condition the cost of the miracle 7.69 uk pounds then you takea protocol to heal your weak immune system,all post viral conditions and chronic fatigue conditions havea root cause low atp levels coming from low glutathione levels,all these conditions are kept in place by nutritional deficiencies and they are all easily healed
The thing I figured out a long time ago is that the average doctor is not nearly as clever as they think they are. Im a man but Iv experianced a lot of this kind of gaslighting. Im sure its worse for woman from what the woman in my life have told me, and that horrifies me.
The go to explanation of metabolic dysfunction is psychological stress. If you don't agree, because you are not psychologically stressed, it is highly probable that the problem is chemical stress. The symptoms are identical.
You have to be your own medical advocate but if you are really feeling unwell in hospital very difficult. Much worse during Covid when you had to be by yourself and your partner/relative friend was unable to advocate for you. Experience with my daughter who has had years of being treated with disdain/disbelief and patronisation.
Thank you so much for this! Very relatable! Do anyone know a reference for the statistics on men being more likely to be referred to cardiologists when they have chest pain? I went through chest pains and other issues in the beginning of covid, and was basically told it was anxiety and depression. Turns out I had pericarditis, and was lucky to survive, but since I was not treated until after a year it has become cronic. I have made an application for compensation for lack of treatment, and would like to include this statistic in my argument.
Why then do female doctors say the most snide remarks about pushing through and pulling yourself together then? I’ve had ME/CFS for 32 years and the worst comments came from female doctors, specialists and especially female nurses. Stop solely blaming men. Yes the older male doctors are bad at it. But the younger male doctors have been more accepting of new evidence, they’ve been great. The female doctors of all ages are appalling for listing to their patients with new information. They form an emotional opinion and won’t change it when presented with new evidence because their ego gets in the way. Both sexes have their problems in opinion making.
Regrettably, paternalistic arrogance and gender bias affect paediatric care as well as women's care, since it is often assumed that the mother is over anxious and either imagining symptoms or affecting the child emotionally and causing psychosomatic symptoms. I have been in this position and the more frustrated and angry you become with a broken system and bad care, the more this is assumed to be anxiety, purely because of gender. When men get angry they're angry, when women get angry we're anxious. 🤦 That's not to say that men aren't affected by the "What is it? Don't know. Blame the patient/parent." method of diagnosis, just that women get it every time, even at times from women doctors! 🤦🤦🤦
Excellent critical and intersectional analysis - appreciate it from all on the panel. (Also, having gotten ill in March 2020, when tests were not available to many / most of us, I also have felt that additional struggle of not even having the initial validation that I indeed had Covid). I'm 99.999% sure that I got Covid and have struggled with long-Covid since July 2020, and it is frustrating that medical specialists at times have questioned my history and experience, given the lack of initial testing and absence of antibodies at the 8-month mark. I trust that I'm absolutely not alone in this, either!). Also, Gez, I would appreciate your email address, if you're comfortable to share it. I would like to send one personal note of appreciation. Thanks.
I understand the medical establishment doesn't believe in long term lyme disease either. Despite my neice having had it for years, even being hospitalized, convulsing and foaming at the mouth, her doctor was incredulous at the suggestion she still had lyme. Since insurance won't cover it, that's probably a driving reason. She's had to get alternate medical treatment, out of pocket.
I had the same experience, been told to see the pshychiatrist. Ofcourse it is usefull to get a check up, but it does not solve the rootcause. I really had the feeling i was recovering, but since the last 2 weeks I feel shit again. I don’t feel like I will get better, since it has been 17 months of fatigue and headache. It is just COVID the flow now 🤒
1:33 eye edema.. I think I had the same thing in July last year. But was never diagnosed with covid. Become more sensitive to more types of food since.
Hi Gez, How is your heart? Are you still experiencing tachycardia and chronic fatigue? Also, are you still taking Niacin? Were you taking the one with FLUSH or the one WITHOUT FLUSH? Thank you for sharing such valuable info! I hope you are doing well.
Hi John. My heart is ok but I’m still prone to tachycardia - pretty sure this is nervous system related though. Fatigue improving but bad when I suffer PEM. Still taking Niacin - with flush! I take with an aspirin after breakfast.
the symptoms never go away some days after fasting I feel great and hungry again I soon regret breaking my fast I fear that extended fasting is required up to 10 days maybe 40 days to break the virus from gut fat in the upper and lower bowel. Only when I am firmly in ketosis can I function as soon as food is introduced the throbbing device in my head starts drilling it's scorching hot hole as my bones melt I'm drawn into the bowels of the earth and my remains are heated unevenly by the molten rock as time flows slowly forwards then backwards so you relive the pain over and over. Sound familiar?
Curious if anyone has collected information on whether folks who are suffering from these terrible long covid symptoms have or have not received vaccine, what type and how many????
@@kfamilyvideos1 they deliberately make it as difficult as possible. They also take an “administration fee” for doing the refund, If I remember correctly.
I love the bit, based on a sample of 1, is that you blamed "misogyny", "gender bias", "political motivations" and even "class". At no point, not even once, did you indicate as to how to treat her illness as it presents. Hmm. Wonder why.
Though obviously not 'all in your head', my experience is that post-viral tachycardia with panic disorder can be drastically improved by paradoxical techniques (such as DARE or the work of Dr. Clair Weekes) that treat anxiety and thus eliminate many of the physical symptoms. Surely since the amygdala can give anxiety sufferers such harsh physical symptoms then calming down that primitive part of the brain with the appropriate techniques can help physical symptoms as well. Obviously this is just one aspect of treatment but in my experience it can be like flipping a switch for some people.
The racism, classism and sexism is real in diagnosing LoCo, anxious hysterical women My menopause is affected by long covid and I know many of my symptoms are being dismissed on that basis Also Dr Khan can get it, is he single? 😜
@@RUNDMC1 Your colour looks better! I’ve been having Botox in my neck and top of my head and it’s really helping with my 18 month covid migraine. I’d be interested in hearing more about the eye effects and headache related stuff. Thanks for your series, even when it frustrates, it’s wildly informative
I’ve previously covered the psychological impact of Long Covid in other films, if that’s what you’re interested in watching. Try the mental health and long covid one, yellow background - went up about a year ago
StarWalker86 Had to sleep for two hours this afternoon, got up for an hour then had to go back to bed again. Felt pretty awful and the sleep was mandatory. I had no choice in the matter Feeling a bit better this evening - hoping tomorrow is ok
Connected to sexism and racism? Oh come on lol, what isn't sexist and racist these days. I think saying this is completely unhinged, but yes doctors definitely do brush off long covid/cfs sufferers but not because "sexism and racism." So are these people telling me straight, white, educated males wouldn't be treated the same way? Way to inject identity politics into a relatively productive conversation about long covid dismissal.
There have been studies that have shown that ethnic minorities - and particularly females - get a poorer standard of care and poorer outcomes than white males. It’s well accepted in the medical community but it still happens.
@@RUNDMC1 By what measure of "poorer standard of care" are we talking about some survey study, or a study where they can isolate most variables possible in a lab? Same doctor, same background, same behaviors, same people, etc. Social sciences are at best an informed guess, not engrained fact. This could also ignore how women and men deal with situations differently. Does it control for the ethnicity and sex of the doctors involved. That's flat out ridiculous to make a blanket statement. I think the last thing in most doctor's head is the sex, race, or ethnicity of their patient, but I know some will say "unconscious bias" exists which is also a big pile of politically correct garbage.
Having long COVID has shaken my faith in the medical establishment. I'm now scared to talk to my GP; it feels like going on trial without a lawyer, being presumed guilty of hypochondria until proven innocent, and being sentenced to indefinite denial of appropriate care.
Same here. I can’t talk to him about it all. I know he’ll just prescribe me more anxiety medication and send me home without even attempting to address anything else.
Same here, well said
Yes, my experience exactly. I hope it never gets as bad for you as it has for me (I'm ME/CFS since 1991, with Long Covid symptoms after Dengue Fever).
100% - I’ve had ME/CFS for 26 years, I don’t even mention it to most doctors, I only talk about it with a specific doctor I have who specialises in CFS
My experience 100% . 62 yrs female with 4 yrs of autoimmune disease. My problem, great genes from way back, I 'look pretty good' . They are evil.
As a person who developed cfs....I have always respected Drs who accepted that the do not know but are willing to gmsupport you and go on the journey with you, with heart, caring, compassion and learning along the way.
This was painfully familiar to me. I was referred to a psycologist and had to explain to him why I was there. I became depressed from being treated like this. Thank you for talking about this important long covid issue.
drink the miracle mineral solution in less than 12 hours it will clear the dead viral debris out of your system ,thats whats keeping you stuck in sickness,dead viral debris debris wont show up in any test so the doctors think you are lying,doctors are causing patients ptsd by leaving them totally undiagnosed,they are a disgrace ,i heal post viral conditions on a daily basis,the root cause of these conditions low atp levels coming from low glutathione levels,its a nutritional deficiency problem and its easily healed the miracle mineral solution cost 7.69 uk pounds
@@Beekind799 what is the miracle solution? I am suffering from 11 months.
In 2015 I was a university student and a semi professional footballer. I then got mononucleosis (EBV). I have been sick ever since with M.E... :-( if you think there is no help and attention now, just imagine before the pandemic.
It frustrates me that M.E. gets a new name all the time. Every virus can cause it. Thanks to all you new patients and advocates for giving me just a bit of hope.
Yep. I got CFS thirty years ago after a seasonal flu virus which everyone around me had. They all recovered but I didn't . I'm trying long term Ivermectin with Zinc to try and clear out the viral load. I take 15mg to 18mg Ivermectin every 72 hours along with 22mg zinc everyday. I don't know it it's going to work but other people are having success with it. Check out "Drbeen Medical Lectures" on UA-cam. He talks about using ivermectin for EBV.
@@raymilland3413 ivm and zinc is highly effective,it dont work for some the miracle mineral solution works for everyone,in less than 12 hours it clears all the dead viral debris out of your system thats hwtas keeping you stuck in sickness,thats what a post viral condition is the cost of the miracle 7.69 uk pounds message me i will type outa protocol that will have you full of energy indays,
I actually feel better than since before I was infected, and look better. In my opinion, I think I had NAD+ deficiency and mitochondria dysfunction off and on most of my life, and COVID-19 exacerbated a pre-existing condition. The MCAS Keto diet works well, and I feel strong. The supplements also help.
@@nomebear a dairy free ketogenic diet has given me some relief from me ME/CFS symptoms too. I'm still not well by any stretch but I do have more function than I did before. I would presume it could be of help to those with Long-covid but it takes time to have an effect for people to see if it is a useful tool
Well so different viruses do vary of course and given the large variance in symptoms, it is entirely possible that there are many subtypes of ME/CFS and that in the case there is viral persistence, the type of virus determines your symptom profile if you will. Some viruses have higher percentages of people who have lingering effects than others. Some viruses like hiv clearly have lingering effects if left untreated, but are deliberately not put under the ME/CFS umbrella. So I guess ME/CFS is really a container term for many types of illnesses with many different underlying mechanisms of how they make you sick, depending on the type of virus that’s (been) plaguing you, among others. So is long Covid a separate thing? I think a good case is to be made it is and a good case is to be made it isn’t.
As a young male athlete I was belittled and ridiculed by doctors when I got sick with epstein barr virus in 2014.
They gave me the “health anxiety” diagnosis although I could barely get out of bed. It doesn’t matter who you are when you get chronically ill with ME. The doctors won’t care.
@@Beekind799 nope
@@Beekind799 you’re a scammer
Not totally sure about this.....but I get the feeling males........especially young males, get even less sympathy when it comes to harder to diagnose/prove illness.
Like.........come on, pull your socks up and get on with it...kinda thing.
@@SA77888 the "man up" "toughen/chin up" treatment. It sucks :/
Do you still have it?
I'm a colord male, 35 years old as Sara, and I received the same treatment for my long-covid when I was taken to hospital in the ER at 2 different hospitals. Both ER Dr's (females around 35 and 40 yes old) both sent me back home with Ativan saying I'm having anxiety attacks because my chest x ray and bloods came back clear. Just slight eosinophila indicating allergic reaction.
When finally seeing a pulmonologist he said my EKG was perfect and decided that a psychiatrist would now have to take over and that he could not do anything more to help me. Needless to say I was eventually told that I am depressed and they gave me anti depression meds (benzodiazapines).
I have no history of anxiety or depression.
As a psychiastrist i have received long post viral fatigue patients ( dengue, zika, mononucleosis, and now long covid) . I am an nearly retired doctor . Every story is special . Very often the patient comes to a psychiatrist adressed by his MP whodoes not know what to do after many physical and other exams.. The prediagnosis is « depression » . Or anxiety . They always need to talk and describe the way they don’t feel listened. But not always.We must learn from this pandemic, and we must learn from our patients.
Absolutely - thank you for your support
I had a shrink say that LC is real because there's evidence of damage but ME is a psychiatric condition.
i have ME and have had it for nearly 20 years, my GP diagnosed me after 6 months of tests and prescribed GET which i didnt take up as there was no way i could do any exercise at the time. i was virtually bed bound for weeks. i have been back and forth for 20 years and NOTHING has changed in the profession. I do not go unless absolutely necessary i deal with everything myself. One GP told me people just wallow in their ME another said it was complicated, and neuro consultant told me i was in a 'chronic migraine state' and that was causing all my symptoms. Luckily i have not heard any negative comments to my face but i have had no empathy or understanding at all, i was also put on antidepressants. Only my family know how unwell i have been. The medical profession has failed us all.
Sounds like you’ve had a terrible experience Diane, I’m so sorry.
Sexism in medical care is no joke. Hystericus... Hysterical...Hysterectomy. Still very much a problem experienced by women today. Thank you for acknowledging this.
I encountered this recently on my ward. I was talking to a neurologist about a patient with Functional Neurological Disorder. He was unaware I have FND (due to COVID) as well as Long Covid. He said, “FND is a psychiatric condition seen in hysterical women who think they’ve had a traumatic childhood”. Arse! He isn’t even one of the older generation.
Another great video as always. I'd love to see a series where you interview people who have recovered from Long Covid and ME/CFS to get a picture on different strategies to combat the disease.
Her story breaks my heart. I know people all over the globe are going through the same thing.
Another brilliant film Gez - My heart went out to Kelly & I so hope she is making a good recovery and is now well supported. I had 2 trips to A&E - I am an ex nurse and am still staggered at the dismissive way I was treated. I had a similar heart rate and was terrified - at the first hospital I didn’t apparently meet the criteria to see a Doctor and the nurse said she had been told to send patients away? At the 2nd hospital I went in via ambulance and I was again discharged having been left to sit in a chair for over 12 hours as they couldn’t find anything wrong - my heart rate was 135 bpm - the next “attack” I had I refused to go to hospital again and seriously decided I would prefer to die at home - like Kelly I thought I was dying. Had the GP that I saw weeks before this listened to me I actually told her I was experiencing what felt like a cytokine storm - she decided to test me for diabetes - I often wonder had she listened and actually treated me if I would be in this position now. Thank you for all you are doing and we can only hope that something major will change .
So sorry to hear about your experience Patricia. Thank you for the support!
I was hospitalized three times after seizures. They tested for epilepsy and embolism. Embolism couldn't be excluded because of high D-Dimers. But D-Dimers might just be due to ME pathophysiology. Eventually, I stopped caring. When I get seizures, I have a few moments to see it coming, lay on the floor asap, and prepare to die. When I wake up, I have similar shaking symptoms like Dr. Fearnley describes. These days, when I wake up, I just try to move on with my life. If I visited doctors for every symptom, the investment of my energy and wellbeing wouldn't be worth it. Every appointment comes with a high risk of overexertion. So I get PEM just to have the same narrative repeated by different doctors. That my basic blood work is fine and that I'm "perfectly healthy", that I should try to engage in more social activities, try to gradually increase my activities, take SSRIs, homeopathy, osteopathy, psychotherapy. I have plenty of extended biomarkers that are consistent with ME pathophysiology, but not in my basic blood work. All of these suggested therapies are either contraindicated or come with an increased risk of overexertion. I've heard this too often. "You're perfectly healthy". When I ask them to read the latest CFS/ME guidelines, they say that they don't have time for this. But they have time to try to persuade me of my mental illness. And they have time to disagree and make an argument when I explain to them that it isn't in my head. The only thing that might be in my head is a lingering virus.
What I'm trying to say. I can relate this experience of going to the hospital because of acute symptoms, and not being taken seriously there. My own way of handling this is accepting my faith, wherever it goes. Not sure if it's the right way, but I don't see any benefit in going to the hospital anymore. Assuming it's critical one day, they wouldn't know how to treat me either way. They would try to treat the symptoms and what they see in the blood, I assume.
@@matfax OMG Matthias - so so sorry to hear this - How awful for you.
@@patriciabryant8892 Thank you. I'm sorry for you too.
I think many medical practicioners don't understand the sacrifice it takes for someone with this condition to have an appointment, and to travel. The usual attitude I get is that I'm just there because I have nothing else to do. And that they have more important patients with real conditions that require their time and attention. I emphasize with the doctors' overburdening due to how the medical system is structured in my country (Germany). What I can't stand is when they become patronizing at the same time, when they waste time and resources circling around the problem instead of getting to a solution.
Very sorry to hear about this Patrícia. Kelly & I are in regular touch & she is very slowly getting there.
A new study by researchers in London 🇬🇧: it's not just 'brain fog'- sufferers tested had lower IQs. I have lost most of my hair, can't taste food, can't sleep at night, can barely shuffle around the apartment, & struggle to think clearly. I have to write detailed lists of things to do, eg 'make a cheese sandwich at noon, put lots of salt & pepper & hot mustard on it'. I no longer heat food on top of the stove after burning a pan & setting off the smoke alarm. I'm depressed & discouraged & certainly feel stupid 🤷😭.
Not surprised on that finding with just how debilitating the brain fog is!
Omega 3, magnesium and lion’s mane
@@claudia1423 I hope you got to enjoy that gin & that you get to be with your husband - You are absolutely not stupid - unimaginable suffering & nothing pathological about what you are feeling in such a dire situation x
Remember it's a temporary situation. You will be fine. Accept the situation. You are safe.
Vitamin B3 niacin with flush and melatonin. This will seem strange but it wont cost you much and is easily available, try nicotine gum.
Going into the science will take too long and giving you this advice wont cause you any harm.
Gez, thanks again for another brilliant video with powerful speakers. There’s the shock of getting post-viral illness and when we are at our most vulnerable, then there’s the double whammy and mental torture of trying to prove it! After 21 years with M.E., I still can’t decide if the physical suffering or the disbelief brings the most distress, as both are equally horrendous.
It’s beyond shocking that 100,000s with Long Covid, have now joined the ranks of M.E. patients, whose lives are on hold until science catches up.
Hear, hear! Wonderful conversation.
I'm 45 and have learned my lesson with " medical professionals". You have to fight for yourself and your loved ones. Doctors,in general, don't really care. I even met some angels with compassion and sympathy. That has been a blessing.
If a doctor can't say "I don't know" and just say it's your psyche, without a good explanation, go and never come there again.
A family member is battling a very rare cancer, even her was told in the beginning it was in her psyche. So stand up for yourself!
Absolutely. Thank you for the great comment Marr!
I've had Long Covid symptoms since 1991, after contracting an undiagnosed tropical disease (most likely to have been Hemorrhagic Dengue Fever) and was then diagnosed with ME/CFS. After 30 years of mistreatment - which has gone as far as abuse on many occasions - from the medical community, I am now mostly bed bound. I no longer expect any help from doctors and am happy to find someone who will just fill my scripts and leave me alone. I took it personally when I was treated badly for the first two decades, but now my perspective has changed. YOU ARE NOW WITHIN A GROUP OF MARGINALIZED PEOPLE. This means that people can get away with treating you however they want, and they know it. If someone has a tendency towards misogyny, and you're female, then that's going to be what you get - and so on. THE BOTTOM LINE IS FINANCIAL. Doctors don't have the time to figure out and help. The system is set up for tests, pills, and surgery. You don't fit in their boxes. You take up too much time. This makes YOU difficult. You are a difficult patient - and it's NOT that you have a difficult illness. And you're going to continue to get one of their excuses that will allow them to excuse you. Eventually, you'll be happy to find someone who will just take care of your basic needs without any harassment. Sorry for the bad news everyone. Oh, and if you're wondering what I do when developing something life threatening? I suffer and am prepared to die. (I developed an Intussusception 2012, it took me over 5 years to get it correctly diagnosed - because a doctor from a prestigious hospital "downplayed me" which resulted in a misdiagnosis - and then no other doctor would consider any other diagnosis... it's supposed to kill you without surgery... I'm living with it... I'm sorry people, but you just have no clue what you're in for)
I’m a fellow ME person and I just wanted to say how very sorry I am to read about your experiences. We both know that variations of your story are repeated time & time again. Since I moved to Cyprus, I’ve decided against asking ME being recorded on my health record here, for reasons you have just demonstrated.
I do have hope though, that because such a large number of people are presenting at one time with this kind of syndrome, that we will finally, finally see a change of attitude in the medical profession and that research money will at last be invested in this area.
I hope and pray that things will change for the better for you. 🙏🏼💕
@@ysbyttybedbug Thank you, Kay, for responding in such a kind and understanding way. I felt worried/bad after writing this because of how negative it was. I used to be such an extremely upbeat and positive person (my father referred to me as a "celebrant" and I'd heard "Pollyanna" while growing up on more than one occasion) and, if you can believe it, I've still retained some of that - but not when it comes to doctors or getting medical care - it can't be anything other than dark. What I've been thinking since I wrote this, is that people need to be warned about the specific things that can happen, so that they can be prepared, and then possibly protect themselves. For example, that they're going to be at a much higher risk for having medical mistakes made - which can range from misdiagnoses that they can't correct (which will then follow them in their medical records, to each new doctor, so that the symptoms of the wrong diagnosis are responded to - while the symptoms of the real one are ignored/denied - and you're just left to suffer with them, no matter how serious they might be) to medical mistakes during surgery (because the doctor will use the time they have with you, to catch up in their schedule, if they're behind... or they'll even leave you with residents, during surgery, to go give a speech, which is what happened to me). What they need to understand is that they're going to be labeled, and that this label will follow them around, in so many different and very ugly unexpected ways. And, yes, they may find a few doctors who care, who try to help, but that won't change anything in their records - they will remain being the difficult patient, the patient that doesn't know what they're talking about, the patient that needs to be politely (or not so politely) pushed away. I JUST HOPE ALL THESE NEW PEOPLE DON'T HAVE TO LEARN THE HARD WAY. But, one thing they do have that we didn't is numbers, and I really hope that helps them... but I'm not seeing that. They're starting out as we all did - feeling ignored, dismissed, not taken seriously and THAT'S HOW IT STARTS - main point being is that it IS just the beginning, and they need to learn/understand what can happen afterwards. I wish I could suggest a book or some other resource. Do you have one you can recommend? Anyway, yes, I understand why you don't tell them anymore that you have ME/CFS - most of the time I don't either. You have to do that to get better medical care. My heart goes out to you, too. Oh, and hey, you're in Cyprus? I lived in Greece for many years... so Yassou! Love to you, Katy
@@katy4763 wow, yassou! It’s a small world 🇬🇷🇨🇾. Don’t feel bad about sharing your negative experiences, it’s good to forewarn people and I thought the 2nd video in this series gave some good suggestions on that score. I’m also very hopeful that the new NICE guidelines, due to be published on 18th August, will do away with GET/CBT once and for all - the draft guidelines were really good. You may want to have a look at the ME Association’s website and, if you are on Facebook, follow them for up-to-date info. The website has loads of useful stuff and they produce something called ‘the purple book’ that they will send to your GP for free, it contains everything they need to know regarding latest research, treatments etc. You can download a sample from Kindle for free, if you want to see what it’s about. I plan on printing off the NICE guidelines once they’re published, and taking them with me to any medical appointments (I think my GP’s already got the message!!). If I then get any negative or dismissive comments, I can brandish them as evidence!
I know what you mean about being, at heart, an up-beat person. Me, too! I’m a Christian, so find my peace and security in Jesus, but that doesn’t mean I don’t have my dark times, especially when in the middle of a long crash or I’m having issues with the medical community. Overall, though, I have learned to be happy and at peace with my quiet life. I trust the same is true for you, too, and for those people who don’t experience full recovery from long-Covid. Much love xxx
PS I was especially shocked to hear about your surgeon leaving mid-operation to make a speech!!
PPS Regarding the long-Covid sufferers, what they have, which we didn’t in our early days, is access to social media/the internet, which allows them to be much better informed (and therefore armed!). People like Gez are doing an absolutely amazing job. Plus bio markers are beginning to be found. So I’m hopeful that things are finally changing. 🙂
I’m similar to you. Sending love and empathy.
@@ysbyttybedbug Yassou Kay! What a nice surprise to find your message! And it's so informative - so truly thanks! You may be thinking I'm from Europe, but actually, I'm in California! Our medical system is much much worse than yours! But I WILL follow what
My heart goes out to all who are being wrongly accused by their medical professionals of anxiety when they have ME/CFS or Long Covid. The heart doctor who I went to evaluate my sudden BP issues/tachycardia after my bout with covid accused me of "anxiety". All that did was made me stop seeing my doctors because I knew they were unable/unwilling to actually try to help me. It's so shocking that this is happening to so many of us and even doctors too.
the miracle mineral solution ends all post viral conditions in less than 12 hours,they all have a single cause , a weak immune system that cant expel dead viral debris from the system,the miracle mineral solution will clear all the dead viral debris out of your system,the symptoms all vanish the immune system calms down and the energy levels rise then you take a protocol to fix your weak immune system,message me and i will type out the details for you
@@Beekind799 I'll pass on the snake oil, thank you. What helps post-illness recovery is proper rest for months, pacing, lack of stress, and healthy eating with the proper vitamins & minerals. Sometimes medicines are needed too. Our culture seems to have forgotten everything but the medicine and expects people to recover from serious illnesses in only a few days.
It's so true what you said about medical fraternity. Being a doctor It's surprising to me. I get mocked at by my colleagues all the time. It's traumatic to say the least. Hope this attitude would change.
@@vinayagowda7948 So sorry that your colleagues lack empathy and listening abilities. I think those skills will become more & more not just important but required in the near future of medicine. Meanwhile my sincere wishes to you for a quick and complete recovery from long covid. I've had it for almost a year and 1/2 now. It's been a slow process but I've been seeing steady improvements. It's required making changes to my life.
It's so frustrating! I have anxiety too. When doctors say "it's just anxiety", that means they think my treatment isn't working. So they should have to work with me to develop a new plan. But no. They just don't want to do work or admit not knowing so they say anxiety to get it off their plate. Such a disgusting tactic.
Many thanks for the video!
This is a regular problem with the medical profession, and especially for me/cfs sufferers.
Good you've made a document/ary that can relieve sufferers' grief a bit, and be a document they can refer to.
Very kind and good!
Thank you Kelly, for sharing your story. It shows great courage and really, it reflects other people's arrogance. I am sorry you had to go through this. Horrific and yes, sadly, you are not alone. Thank you to all the professionals on the panel for speaking up especially when you have had your own health struggles. It may seem like nothing, but having professionals - doctors and those connected to the psy-professions - speaking up, gives those of us who are 'lay' people a voice, and we aren't alone and nor are we crazy. Thank you for using your position to highlight abusive practices and normalised but harmful narratives in the wider health domain. It is needed and appreciated.
The first time a doctor ever admitted that I have EDS (Ehler’s Danlos Syndrome) was when a pulmonologist was deflecting from admitting I have long Covid. 🤪 He also tried to send me to the ER because I was crying - because I had been having low oxygen levels for months and begging him for oxygen and still wasn’t being taken seriously. And many other horrifying experiences. So glad that you all have addressed this. Thank you. 💗
So sorry to hear you’ve experienced this Mickey
I should be sorry that so many other people have had this as bad or even worse than me - but it is such a relief to know absolutely that 'it is not in my head'. I am a white 60 year old RP speaking male and I have had a taste of all the attitudes mentioned here. I have had ME/CFS for decades too. I didn't think it could be much worse, but, now I know it could be - if I was a woman ! They decided I had Thyroid cancer rather than admit they didn't know what Covid can do to us. It took me six months to get that diagnosis put to one side.
My experience has been similar to yours thanks for your validation as a man regarding the misogyny that makes all of this so much worse. As if it needed to be made worse.😓
Read my response to "ShanKat". 😂🥰
All labs come back clear, I stopped going to the hospital. They had no idea what was going on, they couldn't just tell me they didn't know...
Thank you 🙏 thank you 🙏 thank you 🙏 Fot all you long Covid videos! I saw your first video on Dysautonomia/POTS & MCAS. When my cardiologist told me she thought I had POTS, I then started researching the condition. It lead me to your videos and MCAS. I’ve been testing for EVERYTHING, even a rare pheo/paraganglioma tumor. All labs and scans were ALWAYS normal. I told my primary care doctor to refer me to an allergist/immunologist for an MCAS work up. I told him that POTS & MCAS tend to coexist, so he sent over my referral. The allergist/immunologist knew I was coming in for Mast Cell Activation Syndrome. He reviewed my other labs and ordered me some more. My 24 hour urine leukotriene was elevated, I was symptomatic and responding to treatment which indicates MCAS. Most of my symptoms subsided, except for my extreme tachycardia, body fatigue, breathlessness and hives/Dermatographia. He decided to add Xolair treatment to help with the hives and in hope it would help my MCAS overall. Three days after my first injections I was able to breathe with ease and the heaviness in my chest was completely gone. My tachycardia greatly improved and so did my body fatigue/heaviness. Not one of my specialists considered that I may have had inflammation in my lungs. I never even considered that it was an issue with my lungs. At every doctor appointment my lungs sounded clear and my oxygen level was always normal. I never felt like I couldn’t breathe, it felt more like I was breathing heavy due to my tachycardia. My allergist/immunologist actually feels a little stupid for not testing my lungs at my first appointment, therefore I don’t have a baseline. Honestly I don’t care because I can breathe great, my energy is back and my head now feels clear. Again, thank you 🙏 thank you 🙏 thank you 🙏. For the first time since March 2020 I feel normal again. Actually, I’m better than normal because I’m also so very grateful 😊 If it wasn’t for your videos and others like yours I would have never known about these conditions. I would have never known to research them and present what I learned to my doctors. You helped me advocate for myself. I hope 🤞 others who watch these videos are able to find answers like I did. We all deserve to be validated, know what’s wrong and get treatment so they can live again! 😁
What a wonderful story. So glad you’re feeling better Crystal!
I was diagnosed with M.E. in early 2011 after repeated and worsening illness extending from having had Swine Flu in late 2009. I've had a mixed response over the years from doctors, but find the lack of funding and interest in research has only compounded the attitudes of the less informed medical professionals. Those who believe M.E. is psychological / that the M.E. patient is malingering etc not only do us a huge disservice, but such attitudes can also lead to additional illnesses being missed too.
I have never been one to rush to the GP, and since becoming ill with M.E., am even less likely to do so. As well as the increase in symptoms caused by leaving the house, I am very aware that any new symptoms have the potential to be linked to the M.E., and so tend to wait before booking a GP appointment and allowing me to evaluate things for myself first. In 2015 I began to experience a range of 'odd' symptoms (more pronounced veins around shoulders and upper chest; and a puffiness in my face each morning that would subside as the day progressed). I waited 3-4 weeks before seeking the opinion of my then GP, by which point the facial swelling was becoming more pronounced.
In respect of the pronounced veins, I was told that I must have 'pulled something', despite having no pain or recollection of having done so. The facial swelling I was told was likely an allergy - something I had considered initially, but dismissed after carefully checking that there was no link to dietary or environmental change, and that there was no difference with the use of antihistamines. I was dismissed on 3 separate occasions from the GP surgery - I kept returning as the facial swelling was becoming alarmingly worse and I had also discovered a small lump in the collarbone area of my neck. The last time I was dismissed by the GP, she actually told me NOT to return for at least 4 weeks. She basically accused me of wasting her time! I believe her attitude was clouded by a deep-seated belief that as someone with a diagnosis of 'Chronic Fatigue Syndrome', I was obviously a hysteric!
Thankfully I knew I was not overreacting and promptly registered at another GP surgery nearby. My first appointment with one of my new GP's was like night and day to what I describe above. She immediately started to make arrangements for various tests. However, by that time my symptoms were progressing rapidly and I ended up in A&E within 2 days of seeing my new GP, as by this time I was struggling to breathe. I was admitted to hospital and tests revealed that I had a high grade Non Hodgkin's Lymphoma, further complicated by a substantial pericardial effusion (fluid around the heart) and less serious but significant pleural effusion (fluid on the lung). My condition on admission was considered unstable and consultants did not feel it safe for me to be transported to a nearby hospital for a PET scan at that time. The symptoms that had been so readily dismissed several times by the GP were apparently text book and definitely warranted further investigation.
I am lucky - I was successfully treated and have been in remission for 5 years now. It could have been so much worse.
My story demonstrates the dangers posed by psychologisation of illness. It is bad enough to be on the receiving end of disbelief when you are suffering from any illness, something I have faced many times when seeking help or advice for worsening M.E. symptoms,. However when doctors see a diagnosis (worse still a diagnosis of an illness they don't believe in) rather than a patient, and their preconceptions cloud their judgement, critical errors can be made.
Thanks for the great comment
I desperately want to cry because I’m so upset that I can’t do stuff, but I’m too tired to cry. I think my body is so broken at this point I’m not sure it can even make tears. My mum and sister are downstairs cooking stuff and I can’t get out of bed to join them. I am 17 and I think I’m going to spend the rest of my life miserable. There is so much I want to do.
It’s so hard Eleanor - I’m so sorry to hear you’re struggling so much. Rest as much as you can and don’t feel you’re going to spend forever like this - you won’t.
Today I'm 100 percent symptom free from long haul COVID-19. Infected in 2019, I have gleaned so much good advice and reinforcement from watching the interviews on the YT channel RUN-DMC. I identify with the host, and appreciate his investigative nature regarding his challenges with long haul COVID-19. To those in this interview, my heart goes out to you, I know what it's like dealing with the "symptom du' jour" cornucopia caused by a COVID-19 "hijacked" autoimmune system.
I give his channel a huge amount of credit in helping find solutions that have worked for me. It was through this channel I realized that I was dealing with a compromised auto immune system, NAD+ deficiency, and mitochondria dysfunction.
Regarding my dismissive healthcare professional colleagues, I try not to be angry, but I felt like the seven specialists and $20K in tests were little more than a money grab. I'll be changing providers in September to one that has a long haul COVID-19 modality.
Great to hear of your recovery!
Did you have joint popping?
Gez, I’ve thanked you a lot, but once again loved this, especially after seeing my medical report from a Revered Professor of Cardiology who attributed potential Afib, AV block, and clearly distended Jugular veins as “Acute Anxiety”
This has to stop it’s almost Pythonesque in absurdity regarding their response to patients 🤦🏻♂️
It is. Isn’t it?!
@@RUNDMC1 It’s given me a ton of material for my future stand up comedy career at least - but terrifying lack of human empathy shown even if they think it’s merely “anxiety” … oh what you mean a debilitating mental illness Dr. Gotta compliment your on your consistency in response Gez not sure where you find the time mate 😂😂🤷🏻♂️
all post viral conditions can be ended in less than 12 hours ,drink the miracle mineral solution in less than 12 hours it will clear the dead viral debris out of your system,the root cause of these conditions low atp levels coming from low glutathione levels,messag me and i will type out the protocol for you in days you will be bursting with energy,you cant fix a condition if you dont understand what causes it,forget idiot doctors they cant help
It was the look that clinched it
@@Beekind799 When I looked up the miracle Mineral solution & it says it's industrial bleach & could kill a person. You can't drink bleach.
This video came at just the right time for me. Sincere thanks to you and everyone involved, you are making such a positive difference.
Thanks Reece!
Great panel, everyone brilliant (Prof. Huges particoularly outstanding). Thank you Gez for setting this up to raise much needed awareness about post-viral diseases.
That credit needs to go to Asad for organising!
@@RUNDMC1 thank you both then, Asad and Gez :) please carry on with the great work
prof huges is a fool ,all post viral conditions have a single cause,dead viral debris in the system what the weak immune system cant expel,there end of mystery ,drink the miracle mineral solution it ends all post viral conditions in less than 12 hours then they takea protocol to address the low atp levels coming from low glutathione levels
@@Beekind799 🤣 sure, and now you can go back to the circus where you belong 🤡🎪
@@frcfun8328 oh dee dums ,have you got your knickers ina twist oh dear ,i heal post viral conditions and chronic fatigue conditions on a daily basis i also give them the knowledge on what doctors actually are,many of them spit on the doctors its great i explain to them what scum doctors are
Brilliant to see this being talked about, it’s about time. But… is there some irony in that it is a discussion that focuses hugely on medical misogyny and deep ingrained sexism in which the predominant voices we hear from are, yet again, men!
The panel is 3 men and 3 women! (Including Kelly). Asad and I just ask the questions :)
@@RUNDMC1 yes but the men do most of the talking and most of the explaining. Still a great discussion but the power balance is off.
I have PCOS , VVS, IBS and non-diabetic Reacive Hypoglcemia, all of which are dismissed mostly by the medical professionals and mainly treated as psychological issues, which is simply not an accurate diagnosis nor treatment and really isn't good enough.. I have struggled for years to get help controlling these conditions/diseases to the point where i have given up. I totally sympathise with all of you that suffer with Long Covid , it's truly awful. I hope you cam eventually get some help and support.
I have VVS, bouts of hypoglycemia, MCAS & dysautonomia symptoms. As far as the hypoglycemia goes, years ago I tried cutting sat fat to improve my overall health and found reduction in hypoglycemia attacks. Later I did 23andme and found I am a carrier for a fatty acid oxidation disorder gene (MCAD deficiency). My father had an unexplained bout of rhabdomyolysis during the course of multiple system atrophy - rhabdo is not associated with MSA, but his doctors attributed it to MSA (he was not on statins). So I think fatty acid metabolism is an issue for me. I had been taking tributyrin for a few months & dropped it recently - hypo came back shortly after. Tributyrin converts to butyrate which increases PPAR alpha activity. I also take ubiquinol, ALCAR and carnitine fumarate.
For VVS the best thing for me is topical estradiol (note that estriol and premarin did not work). I also use Eucrisa for eczema in that area (yeah my life sucks) and I think it also helps.
It seems like MUFAs could potentially exacerbate PCOS, based on experimental studies (not human, but a human study did find higher circulating MUFA in PCOS than control). MUFA increases androgen production and can reduce apoptosis (follicular atresia is diminished in PCOS). So my suggestion would be to carefully monitor symptoms in relation to dietary fats and see if there are any trends. MUFA is generally thought of as being very healthful. I use the cronometer app to track my nutrient intakes - kind of a pain in the rear, but for me, it's been worth it.
Exercise is really important for me - when I can do it, that is.
~
And I've been told my VVS, etc was due to trauma. Except the health issues started first, but I think causality (and rationality) is beyond some people ...
@@rhyothemisprinceps1617 Thank you so much for reply. I am so sorry that you're going through so much.
I have super specific dietary restrictions as I also have malabsorption, intolerance to sugar and fat above 5g/100g and lactose intolerance. It's a royal pain in the rear as you say. Exercise is very important yes I agree, as is salt intake and fluids so I try and keep on top of those. The smallest thing can set off a hypo if I'm not careful and don't balance my meal with enough protein. But then I could eat the same the next day and be fine so no rhyme or reason 🤷♀️ I'm unsure of what some of the things you said mean , so I'm off to Google. ☺️🌻
@@punkyfish1977 Gee whiz you have a lot to deal with. I wish science were more advanced. I hope you find some answers and relief. Take care.
@@punkyfish1977 I should mention that hypoglycemia can be caused by insulin autoimmunity - aka Hirata Disease. It can be induced by alpha lipoic acid and reverses when ALA is discontinued. I tried ALA years ago and did have notable increase in hypoglycemia attacks which stopped after I stopped taking it - and not placebo since I had no idea this even existed - I though ALA would improve mitochondrial function. Not sure what all the connections are between fatty acid metabolism and autoimmunity, but 'immunometabolism' is a hot research topic right now and I hope it bears fruit.
Oh, and I also take PQQ and think I think it helps with microcirculation - pink nail beds and gums, goes well with CoQ10. Pomegranate pith / extract can do the same thing (increase new mitochondria through PGC1-alpha (provided one has the right gut bacteria to convert ellagitannin to urolithin A).
This is EXACTLY how I feel!! 😢
No one believes me!!
I'm referring to the first young lady that spoke, I am still going through this by myself, no one cares...
This is your best one Gez. 100% my experience for the last 5 years. Sarah Graham, you are amazing and I will be looking out for your book!
Thank you Sophie! Best of luck with your recovery.
I just dont know how those psych people sleep at night. Patients are suffering.
Incredible video and well timed with the NICE guidelines for ME coming out soon. Thank you Gez and all who took part
Thank you Kelly, your story is touching. i had a very very similar experience. I have a vet background and also was dismissed by several physicians. I barely had the strength to look for help anymore and at a certain point gave up with terrible scary symptoms. I was very fedup by the medix and the way they did not do their work properly. I begged for broader tests as i suspected a problem with the immunesystem but was told i should see a psychiatrist.
As someone with an ongoing addiction and long covid, I havent even TRIED to get signed off sick as I have just presumed doctors will presume either my symptoms are directly caused by drugs or I wish to be signed off sick due to complications addiction causes in ones life. And yet Im absolutely sure this is long covid. The lethargy is unlike anything I have EVER experienced before. I consider myself to be disabled now and yet Im not even going to mention long covid to my doctor etc. Its a shame, we should be believed when we have very serious symptoms like this.
How groundbreaking it would be if medical practitioners would own their humility and focus on the physiology… doesn’t make sense for them to be making psychiatric diagnosis when they can’t find a bio marker. Absolute nonsense. The more you know, the more you know you don’t know, and it’s a pity how toxic the culture is in medical training. When you see how doctors and nurses are treated you understand a little bit about how they treat patients, they’re undervalued and over worked and don’t get enough time, patience, or empathy for how hard they work. But to grow that empathy for their patients will be their mission. I completely understand that the human experience is more than just the meat body, but right now medicine is about the meat body so they should understand the limits of that and be open to the broader human experience.
12 months in...Daily fatigue, Joint pains and lungs still feel like crap, can't take a deep breath and feel like breathing through a straw. CT scan with contrast all clear, 4 pulmonary function tests all good, walking stress test good, cardiology tests and scans all good, countless blood works all good and it's not that my doctors don't trust me, especially my pulmonologist, the thing is they don't know what more to do to help me. I've been told it's Post Viral Syndrome and that it should get better with time and to do breathing exercises and light cardio.
Very very common story - keep up with the breathwork, very important
@@RUNDMC1 Thank you sir, i'm so grateful to people like yourself that are trying to help us. ❤🙏🙏
It does test you to the limits , I know it’s very very difficult to be patient especially on bad days 🥺 but the sun will shine again my friend 😁👍I wish you all the best with your continued recovery 😁
@@richardmock3198 Thank you so much for the kind words and the encouragement. Some days can be tough as you keep thinking will you ever recover or stay like this forever, but I'm still sane 😁 and managing.
you have dead viral debris in your system what your weak immune system cant expel,thats what a post viral condition is ,if you drink the miracle mineral solution in less than 12 hours it will clear all the dead viral debris out of your system,you will feel so much better,the cost of the miracle 7.69 uk pounds ,all the pain ended in less than 12 hours it will sort that breathing stuff out too,my brother was like you he drank the mms in less than 12 hours he was walking up and down the stairs taking deep breaths,if you want details message me i will type it out and the protocol you have to take to address the root cause of your condition shit food,low atp levels coming from low glutathione levels,its a nutritional deficiency condition, thats why doctors cant help they have no training on nutrition or the 5 box immune system ,they are like mechanics that dont know anything about the bloody engine,i cant stand them,
I wanted to say that I'm feeling pretty good now, maybe a 9/10 most of the time, started gym again and no problem there. Sleep is still not perfect like before but my life changed in better. I got a new girlfriend and she is the best thing that happend for me in my entire life. Hope you are doing better too!
Great to hear it!
what were you symptoms during your long covid journey and how far along are you now?
My only problem left is sleep too. Some nights I just can’t sleep no matter what I take. Any suggestions for that?
@@loswonders me too wwhich i think is leading to my slight brain fog and extreme fatigue
At this point, everyone should sign up for long covid clinic's as soon as they know they are positive because the waiting list is already a mile long!!
Once again Thank you 👏👏👏I can totally identify with what as been said. When I first fell into my long covid relapse I asked a male GP if he thought it could be long covid. He was very rude and arrogant towards me . He stated that because I had long covid last year that was LAST YEAR not this year . I came off the phone from him and in floods of tears. I sat with how I had been treated by him for a couple of days however, I did lodge a complaint with my GP practice regarding his lack of empathy , sympathy and his overall attitude. They subsequently looked into my complaint- unfortunately the GP was working from home on the day of the incident therefore they couldn't retrieve the phone call - how convenient for him . It turned out that he is a partner of the surgery too 😕. Fabulous podcast I can't wait for your next one 👏👏👏
😓💜
@@paul2019monte Thank you Sue - I have a female GP now and she's been fabulous 😊👍
So sorry to hear about that experience Dee, it’s awful
@@RUNDMC1 It's such a shame that a certain number of GP's are so dismissive. I am a big believer in Karma though. Thank you for shining alight on all things covid Gez - I'm really looking forward to your next podcast - you truly are a life raft for all of us out here in the storm that is covid - Thank you 👏👏👏
Right now Dr's need to learn to listen to the patients symptoms and how they feel and not only rely on clinical results and tests. It's most frustrating and shocking when Dr's tell you what you are feeling instead of listening to you as the patient
doctors have no training on nutrition or the 5 box immune system,all chronic fatigue conditions and all post viral conditions including long covid have a single root cause low glutathione levels pulling down the critical atp levels ,doctors have no training on nutrition or the 5 box immune system thats why they cant diagnose any of these conditions whose root cause is a nutritional deficiency on the bodies foundation for health the glutathione,low er the glutathione levels if a virus comes your immune system wont have the fuel to work it will spit cytokine storms they can kill you not the virus the response of your own weak immune system can kill you ,doctors cannot diagnose what they have no training in they are useless symptom treaters , doctors are like mechanics who know nothing about the engine,i heal these conditions on a daily basis,dead viral debris in the system is what a post viral condition is,thats what keeps them stuck in sickness,drink the miracle mineral solution in less than 12 hours all the dead viral debris will be cleared out of the system and that ends the post viral condition,chronic fatigue conditions is a nutritional deficiency caused by low glutathione levels these conditions are easily overcome and the body regains health ,dead viral debris in your system wont show up in any test thats why doctors think its all in your head,oh i cant stand them ,patients need to start asking the useless doctors the right questions,like hey doctor what is the bodies foundation for health,they will look at you blank i hope this message explains why the useless doctors cant diagnose the cause of these conditions,they are not health experts they will watch you suffer ,go on ebay type in mineral solution set scroll down look for 2 slim plastic bottles witha yellow and green cap it says gold mins on the front 2 x 33ml cost 7.69 uk pounds put 6 drops of sodium solution in the bottom of a glass add 6 drops of citric activator let it mix for 20 seconds it goes dark now fill the glass up with water and drink it slowly on a totally empty stomache in less than 12 hours all the dead viral debris will be gone the symptoms all vanish the immune system calms down the energy levels rise then take this to address the reason your immune system spits out cytokine storms low atp levels coming from low glutathione levels take with food 2 x 600mg caps n acetyl cystine morn/eve - 1000mg caps cod liver oil and fish oil morn only - 1 kelp tablet morn only - 200 mcg selenium morn/eve - 100mg magnesium citrate morn/eve - 30mg zinc morn only - 2 x 750mg caps beef liver extract morn/eve - 1500mg combined caplet quercetin/bromelain morn/eve this protocol is complete if you do whats here in less than ten days you will be bursting with energy,i heal doctors with long covid i have even healed a professor on the immune system with long covid,i told him you are not a real scientist ,these doctors you are seeing will destroy your health ,stay away from them the knowledge to regain your health is in this message ,the dead viral debris in your system is causing all your insane symptoms mms will clear all the dead viral debris out in less than 12 hours and you will say itsa miracle
@@Beekind799 thanks Michael. I really appreciate your input and will give it a try. I promise you iv been on every conventional medication over the last 11 months and it just suppresses the symptoms, which comes back a few days later. I'm from SA so will see if I can access these meds you mentioned. Thanks
So utterly thrilled to watch this discussion. I have too experienced awful primary care responses in the same hospital I'd been proud to work in years before as RGN.
Treated like a complete nutcase. Refused x-ray etc as clearly anxiety despite presenting on crutches distressed and I believe able to be concise and clear in my history given.
Left in agony. Month's later eventually scanned and found bilateral stress fractures to both tibia.....
So sorry to hear of your experience Amanda
I believe we will not make headway without attacking the system, the very one that allows doctors to minimize illnesses, not update their knowledge according to science. Most of all, teach doctors to respect and listen first instead of insulting patients. I suggest that patients take a recording device to every doctor appointment to gather evidence of their knowledge or lack of or even misogyny.
Thanks again Gez, excellent and relevant as usual. I have found the skepticism just crushing at times.
Long covid is certainly not in your head. This is so frustrating when we hear that. I had my second dose of Moderna 3 weeks ago and it in the following hours gave me cough and this is still there, along with a mild return of brain fog and fatigue. I really really hope it will go away, and I started back to take the vitamins and minerals.
It's antidotal but I seem to have more friends report side effects with the moderna shots than the pfizer shots.
I have a nagging cough since getting 1st Moderna. I thought it was from the air quality alert we've been under here in Ontario 🇨🇦 because of the smoke from all the wildfires! What a crazy world!
@@TheWBWoman I heard that too!
@@claudia1423 Hi from Quebec, Canada! I'm in the greater Montreal area and the air quality was definitely not helping with the cough, especially in the middle of last week! For me, the first Moderna vaccine was such a relief and I tought that I was fully cured form long covid. But, I took some vacation and it actually took more energy than I tought I had, which caused quite a relapse. Second Moderna shot has been rough on me. I hope it will get better for me and for everyone!
@@alexandrecouture2462 🙋 Alexandre! Getting my 2nd Moderna on Wednesday & I'm a bit nervous. I still have muscle aches from the 1st. If you get your strength back maybe you can 🛶 down the St. Lawrence to Kingston with some Poutine🧀🍟. Gin & tonic🥂 or 🍻 is on me! Claudia
Fascinating stuff. It’s quite a bit ironic it takes all these men speaking up to bring to light long Covid and other post viral illness, but in any case a thousand times thanks, Gez! It’s true when we have a voice we need to use it, just like other forms of discrimination. So much gratitude for your series on LC.
Well we had 3 women involved too! Thanks for your support :)
@@RUNDMC1 but we barely heard from them in comparison to the men - who did most of the explaining about what’s going on and the theories behind it. Bloody great discussion though, and much needed. Just felt like the power balance was off a bit. 🤷♀️
Thank you Assad and Gez and everyone who helped make this video. X
Another great topic. One very frustrating and expensive effect of not being believed by doctors in addition to the psychological toll and lack of medical help is that the visit doesn't get coded as COVID, which last year in the US was 100% covered by some insurance. Without proper coding, it was a nightmare in itself of repeated phone calls and paperwork trying to get insurance to pay. Ultimately, patients in many cases (as happened to me) end up with very large medical bills that should have been covered.
That's me. I was on short term disability for 6 months. Cigna had approved all my doctor visits. When my job got tired of me taking too long they let me go and the insurance company denied all my previous visits and charged me $12,000 worth of medical bills. Here i am 13 months later with chronic fatigue, insomnia, brain fog, PTSD and depression. I'm in the process of selling all my belongings to pay rent and eventually down to my car. Probably be homeless by summer 2022 if i can't fine the energy to get back to work. I have PTSD from this thing. I stayed in a dark room suffering for a whole year, terrified of outside and the vax. I don't want to feel like i did the 1st 9 months of this.
16 months later, 2 trips from Palm Beach to Rochester MN to Mayo Clinic (thank God for Mayo Clinic), a major lung hemorrhage, 2 hospitalizations locally, 3 vaccinations of Pfizer-BioNTech, and I am still symptomatic. I have a pulmonologist, oncologist, endocrinologist, cardiologist, you name it, if it has an “ist” at the end, I have one. Thanks to Mayo Clinic, I have been diagnosed as having Bronchectasis from the Covid in March 2020, and am being treated for that. However, no one can advise what to do to get my strength back, have my hands stop dropping things and my feet feel like hot coals while the rest of me shivers…………To quote my pulmonologist yesterday, “no one really knows how to treat those symptoms”. Due to allergies, I cannot take a lot of medicines, so I cope with it, but in the back of my mind, I am always saying, I just want my old life back.
Excellent (not just for Long Covid, but also other, 'our tests proved negative' unexplained cases.
I had one senior consultant ask if I wasn't sure my acute breathlessness was down to being a ' bit weighty ', cos all the tests revealed nothing. That was until he saw what a short walk around the department did to me. His notes were still next to useless in detail for follow up.
After sixteen months with Long Covid my positive mental attitude has been waneing and I have lately wondered if my expectations are somehow causing all of these horrible symptoms, despite my PMA? Am I making myself ill? Taking on the responsibility for it by thinking it's my fault gets me down. Thank you for this reality check, this reminder. Of course it's a physical illness! 💥💥💥💥
Yes it is a physical illness but watch my film on the psychology of it - you may find it useful!
Cheri of every M.E and long covid patient I've met there are generally huge lists we have of stuff we are desperate to do but our bodies do not allow it. We have drive to do all the things but the lack of quality of life adjustments due to the stigma of post viral conditions make it even harder. We often swim against the tide. Some of the theory underpinning these psych theories is deeply ableist and contrary to lived experience of chronically ill people. 'Secondary gains' are absurd as a concept because our reality is people do not have endless sympathy for us, we have to fight to get any support through deeply dehumanising policies based in beliefs such as this. Be kind to yourself. Don't allow the gaslighting behaviour diminish your ability to express yourself.
This entire issue is unfair for those with mental illnesses too. It wastes much needed mental health resources during a period of drastic cuts to services and causes avoidable damage to people with post viral illnesses which ends up costing the NHS more anyway.
@@RUNDMC1 thanks, I have watched it, I think! I have had the attitude of a champ, am really proud of how I have handled this... I didn't want to do the Gupta Programme because he refers to "the condition" and that made me feel discouraged. I have honestly felt that I am recovering from an illness all along, not that I have a condition, which sounds really static. I think knowing about this programme and the Lightning Process, and reading about them on Long Covid groups has actually been unhelpful for me. I have questioned my own mental wellness because of them, and because of the medical gaslighting that I got early on, and because "friends" have disbelieved me, and disappeared. I believe that my autonomic nervous system has physically taken a huge hit, and I am physically recovering. I remain hopeful and positive, and pace, and find all the joy that I can in each day. I think time is what we need.
@@sparklingblackrose3 thank you for your encouragement! I will hang on to what I know to be true. Agree, it is hard to name any secondary gains, except the strength I have found within myself.
Cheri, I find that whether it was from the infection or the downstream effects, there is a drain on serotonin that seems to be common in many people with LC. I think mine has improved with niacin supplementation (along with energy and sleep quality).
Welcome to the real world doctor. We are all being dismissed. Nearly two years and counting. No help, no assessment, no scan, no assistance. Just an employer waiting with a loaded gun.
Thank you to the panel. Some of the listeners might find an international forum 'Science for ME' useful. We discuss news and research related to ME/CFS and related illnesses such as Long Covid. It's a good way to start to understand advocacy issues, and to learn how to critically analyse research. There is also support from people also living with these difficult illnesses.
Such a brilliant discussion. Thank you Gez and Asad - it feels so validating for those of us with Long Covid (and no doubt ME/CFS) to hear such wise reflections
Thank you Louise!
Every single panelist said something worth framing! If these ideas permeate across the med profession surely we’ll already be in a far better place.
On the topic of why see doctors not in a position to immediately help… Validation is nice, but there’s also the hope that in aggregate patients are educating doctors, that somehow this knowledge trickles upwards until someone up the hierarchy says: “You know we’ve got millions of people suffering and we can’t treat them. We really ought to fund this and turn up some answers.” Of course, this doesn’t work if doctors doubt the reality of patients’ serious years-/decades-long chronic illness until the very moment they develop it themselves. It also doesn’t work if no one at the top is listening or in a position to influence the funding of biomedical research. But if not, why not?
Very snappy edit as well 👏
@@Winstoncb I agree great edit. Esp of my interview with Kelly…it was a mess pre-edit and I wondered how Gez would ever get it to the screen. But this man can do anything. And great feedback by the way, thanks.
my research clearly shows me what post viral conditions are caused by,their weak immune system low on atp cannot expel dead viral debris from the system,tahts what keeps them sick and thats what a post viral condition is ,i heal these conditions ona daily basis
Telling is that the term "hysteria" is based on the Greek word for uterus.
Look up how many diagnoses can still be made - and are frequently made - with this stem.
All a doctor needs to do is put "somatic" before any diagnosis - and it will mean "it looks like this diagnosis but it's not"
Read 'Illness as Metaphor' by Susan Sontag on this issue. (I think that's the book, but I have brain fog.)
And psychopath used to mean psychiatrist/psychologist.
I've given up on medical care. If there were not barriers to self treatment (needing drs to order certain tests and to get Rx's) I would never bother with going to the doctor. I'm in the US and once upon a time I was all for single payer healthcare, but now I might be going full on libertarian. I still think there needs to be a way to provide healthcare for everyone, but I don't know how to to that and avoid this type of situation ...
I have lost most of my faith and respect for the medical community since having covid and now long covid. Thank you to the docs who are taking this seriously and not blaming the patient for being sick. I am an attorney by trade (disabled though) and worked with docs in my career and had the utmost respect for them. Fast forward to the present: i have been told that the dr couldnt diagnose me with covid bc he would get in trouble with the county gvt; been told that covid and long covid were "made up by the liberal media snd democrats" and it was impossible for kids to get covid and again, that the liberal media is making this up (WHAT???); told it was depression over and over again (and specifically it was a "new" kind of depression that had new symptoms to include chest pain and trouble breathing); been diagnosed with many different things that i do not actually have to include pancreatitis, lymes disease, and my favorite one, gallstones( i had my gallbladder taken out 15 years ago); and many other troubling things. I don't know how to actually treat with a good covid specialist to help guide me bc I live in a smaller community and the specialists wont see me bc i never had a positive covid test - i had it in March 2020. Ahhhhhhhhh!
I am very grateful for these doctors, Gez, and the covid sufferers online. Keep up the good work!!!
Shaun: exactly! Listen to the patient. The clues are in the history. The investigations may or may not help. ❤️
Wonderful panel. Thank you! I totally relate to Dr Nina regarding senior specialists with dismissive behaviour regarding my autoimmune illnesses and ME/CFS diagnosis.
I am now consulting with a mental health group to help me work through all the hopelessness and anger I have built up. I suffer so much and still struggle to work part time but I'm so tired of the constant malaise and brush-off treatment I receive. I deeply appreciate the NHS but I wonder if I purchase private healthcare if I'd receive better care?
In my experience for ‘invisible’ illnesses requiring a holistic approach, sadly you are right.
drink the miracle mineral solution it ends all post viral conditions in less than 12 hours ,doctors donot know what causes these conditions thats why they cant heal them,i heal all these kind of conditions ona daily basis message me and i will type out the pprotocol
Not likely. Finding an Integrative Medicine Doctor or Functional Medicine Dr who treats these conditions is the best chance for effective testing and appropriate treatment. An exercise plan is never the response that you should hear from the Medical Professional, it shows their lack of real world treatment and experience with these Disorders.
@@wildhorses6817 turn to a biological systems engineer fully trained on nutrition and the 5 box immune system,healing these kind of conditions is easy for me .doctors have no traininng on nutrition or the 5 box immune system,they cant help
welcome to the world of ME/CFS
drink the miracle mineral solution in les than 12 hours the dead viral debris in your system will be cleared out and thats the end of the condition the cost of the miracle 7.69 uk pounds then you takea protocol to heal your weak immune system,all post viral conditions and chronic fatigue conditions havea root cause low atp levels coming from low glutathione levels,all these conditions are kept in place by nutritional deficiencies and they are all easily healed
The thing I figured out a long time ago is that the average doctor is not nearly as clever as they think they are. Im a man but Iv experianced a lot of this kind of gaslighting. Im sure its worse for woman from what the woman in my life have told me, and that horrifies me.
The go to explanation of metabolic dysfunction is psychological stress. If you don't agree, because you are not psychologically stressed, it is highly probable that the problem is chemical stress. The symptoms are identical.
You have to be your own medical advocate but if you are really feeling unwell in hospital very difficult. Much worse during Covid when you had to be by yourself and your partner/relative friend was unable to advocate for you. Experience with my daughter who has had years of being treated with disdain/disbelief and patronisation.
Thank you so much for this! Very relatable! Do anyone know a reference for the statistics on men being more likely to be referred to cardiologists when they have chest pain? I went through chest pains and other issues in the beginning of covid, and was basically told it was anxiety and depression. Turns out I had pericarditis, and was lucky to survive, but since I was not treated until after a year it has become cronic. I have made an application for compensation for lack of treatment, and would like to include this statistic in my argument.
Why then do female doctors say the most snide remarks about pushing through and pulling yourself together then? I’ve had ME/CFS for 32 years and the worst comments came from female doctors, specialists and especially female nurses.
Stop solely blaming men. Yes the older male doctors are bad at it. But the younger male doctors have been more accepting of new evidence, they’ve been great. The female doctors of all ages are appalling for listing to their patients with new information. They form an emotional opinion and won’t change it when presented with new evidence because their ego gets in the way.
Both sexes have their problems in opinion making.
Regrettably, paternalistic arrogance and gender bias affect paediatric care as well as women's care, since it is often assumed that the mother is over anxious and either imagining symptoms or affecting the child emotionally and causing psychosomatic symptoms. I have been in this position and the more frustrated and angry you become with a broken system and bad care, the more this is assumed to be anxiety, purely because of gender. When men get angry they're angry, when women get angry we're anxious. 🤦
That's not to say that men aren't affected by the "What is it? Don't know. Blame the patient/parent." method of diagnosis, just that women get it every time, even at times from women doctors! 🤦🤦🤦
Excellent critical and intersectional analysis - appreciate it from all on the panel.
(Also, having gotten ill in March 2020, when tests were not available to many / most of us, I also have felt that additional struggle of not even having the initial validation that I indeed had Covid). I'm 99.999% sure that I got Covid and have struggled with long-Covid since July 2020, and it is frustrating that medical specialists at times have questioned my history and experience, given the lack of initial testing and absence of antibodies at the 8-month mark. I trust that I'm absolutely not alone in this, either!).
Also, Gez, I would appreciate your email address, if you're comfortable to share it. I would like to send one personal note of appreciation. Thanks.
Hi Nicola - yes, no problem - you can email me on dm20abn@herts.ac.uk
@@RUNDMC1 Thanks, will send you a note.
I think my stress from Covid comes from worrying about when I will be able to get off the oxygen I was sent home with.
I understand the medical establishment doesn't believe in long term lyme disease either. Despite my neice having had it for years, even being hospitalized, convulsing and foaming at the mouth, her doctor was incredulous at the suggestion she still had lyme. Since insurance won't cover it, that's probably a driving reason. She's had to get alternate medical treatment, out of pocket.
Very sorry to hear this
I had the same experience, been told to see the pshychiatrist. Ofcourse it is usefull to get a check up, but it does not solve the rootcause. I really had the feeling i was recovering, but since the last 2 weeks I feel shit again. I don’t feel like I will get better, since it has been 17 months of fatigue and headache. It is just COVID the flow now 🤒
1:33 eye edema.. I think I had the same thing in July last year. But was never diagnosed with covid. Become more sensitive to more types of food since.
Hi Gez,
How is your heart? Are you still experiencing tachycardia and chronic fatigue? Also, are you still taking Niacin? Were you taking the one with FLUSH or the one WITHOUT FLUSH? Thank you for sharing such valuable info! I hope you are doing well.
Hi John. My heart is ok but I’m still prone to tachycardia - pretty sure this is nervous system related though. Fatigue improving but bad when I suffer PEM. Still taking Niacin - with flush! I take with an aspirin after breakfast.
I took the Medicine Ivermectin which relieved me of the tremors & anxiety. I take natural melatonin with magnesium & L-Tryptophan for sleep issues.
the symptoms never go away some days after fasting I feel great and hungry again I soon regret breaking my fast I fear that extended fasting is required up to 10 days maybe 40 days to break the virus from gut fat in the upper and lower bowel. Only when I am firmly in ketosis can I function as soon as food is introduced the throbbing device in my head starts drilling it's scorching hot hole as my bones melt I'm drawn into the bowels of the earth and my remains are heated unevenly by the molten rock as time flows slowly forwards then backwards so you relive the pain over and over. Sound familiar?
I’m sure it will for some viewers!
have you ever done 10-40 days ?
I had a traditional Chinese doctor test my bloodwork and found I was severely low in copper zinc and manganese despite taking a supplement.
your glutathione level is on the floor thats the root cause of your low levels
Curious if anyone has collected information on whether folks who are suffering from these terrible long covid symptoms have or have not received vaccine, what type and how many????
Never took the jab, but I did have long covid after March 2020 infection with symptoms lasting about 1yr-1.5yrs
Excellent discussion - well done to all!
Thank you Susie!
This looks good. Having a break at 25 mins in tho. Will watch the rest later. 😊
I approve of the break!
Thanks for a great video yet again .. can I ask has anyone actually fully recovered from long covid ?
Yes I know a few who have done!
@@RUNDMC1 now that answer helps the anxiety thank you... dont think you know how much your helping ppl with this channel
What happens if I force myself to walk it off. I have severe tiredness. That's all now but I find it really hard to get up..
Really not a good idea!
Why isnt Gupta on the panel? Oh, wait...
He says it’s a physical condition too, for what it’s worth. Don’t conflate the mind and the brain.
Not a fan of Gupta. He got my $300 bucks
KFamilyVideos why don’t you ask for your money back? He’s got a full refund offer if you don’t get along with it.
@@RUNDMC1 it's not that easy as requesting a refund. I have to wait 6 months and send the materials back, then hopefully they will send a refund.
@@kfamilyvideos1 they deliberately make it as difficult as possible. They also take an “administration fee” for doing the refund, If I remember correctly.
Hey has anyone tried the Dr Patterson protocol?
Yes, there’s a group on Facebook who are all on it
100 thank you
I love the bit, based on a sample of 1, is that you blamed "misogyny", "gender bias", "political motivations" and even "class". At no point, not even once, did you indicate as to how to treat her illness as it presents. Hmm. Wonder why.
Though obviously not 'all in your head', my experience is that post-viral tachycardia with panic disorder can be drastically improved by paradoxical techniques (such as DARE or the work of Dr. Clair Weekes) that treat anxiety and thus eliminate many of the physical symptoms. Surely since the amygdala can give anxiety sufferers such harsh physical symptoms then calming down that primitive part of the brain with the appropriate techniques can help physical symptoms as well. Obviously this is just one aspect of treatment but in my experience it can be like flipping a switch for some people.
All my symptoms from long covid are now being a link to ME/CFS... feeling poorly as I do can I still take the vaccine ? Need help on this
I made a film on vaccine reactions amongst long haulers - it might help you out
@@RUNDMC1 thank you
Update tony?
The racism, classism and sexism is real in diagnosing LoCo, anxious hysterical women
My menopause is affected by long covid and I know many of my symptoms are being dismissed on that basis
Also Dr Khan can get it, is he single? 😜
Thanks for the great comment - and you’re right he is quite the dish 😊
@@RUNDMC1 Your colour looks better! I’ve been having Botox in my neck and top of my head and it’s really helping with my 18 month covid migraine. I’d be interested in hearing more about the eye effects and headache related stuff.
Thanks for your series, even when it frustrates, it’s wildly informative
I’m flattered…
@@asadik76 😍 hey king love what you do
🙂
Did anyone reinfected with covid while suffering with long covid symptoms
Psychological effects as a real symptom of covid is what interests me - video spoilt by politics - couldn't continue to watch it, no useful info ....
I’ve previously covered the psychological impact of Long Covid in other films, if that’s what you’re interested in watching.
Try the mental health and long covid one, yellow background - went up about a year ago
run how are doing now ? lately ... 1-10 1 being great back to normal .. 10- being worst sucidal ....
I’m probably a 3 on that scale
@@RUNDMC1 Are you still having good periods and bad periods, or you on a constant 3?
robinhood 46 Still a fair bit of variation. Getting PEM’d today after a too busy weekend
@@RUNDMC1 Is your PEM still severe that you must lie down for couple of days?
StarWalker86 Had to sleep for two hours this afternoon, got up for an hour then had to go back to bed again. Felt pretty awful and the sleep was mandatory. I had no choice in the matter Feeling a bit better this evening - hoping tomorrow is ok
Connected to sexism and racism? Oh come on lol, what isn't sexist and racist these days. I think saying this is completely unhinged, but yes doctors definitely do brush off long covid/cfs sufferers but not because "sexism and racism." So are these people telling me straight, white, educated males wouldn't be treated the same way? Way to inject identity politics into a relatively productive conversation about long covid dismissal.
There have been studies that have shown that ethnic minorities - and particularly females - get a poorer standard of care and poorer outcomes than white males. It’s well accepted in the medical community but it still happens.
@@RUNDMC1 By what measure of "poorer standard of care" are we talking about some survey study, or a study where they can isolate most variables possible in a lab? Same doctor, same background, same behaviors, same people, etc. Social sciences are at best an informed guess, not engrained fact. This could also ignore how women and men deal with situations differently. Does it control for the ethnicity and sex of the doctors involved. That's flat out ridiculous to make a blanket statement.
I think the last thing in most doctor's head is the sex, race, or ethnicity of their patient, but I know some will say "unconscious bias" exists which is also a big pile of politically correct garbage.
THIS VIDEO IS SHOCKING PLAYING THE RACE AND SEXISM CARD SINCE U ARE DYING FROM THIS TERMINAL CONDITION I WOULD BE TO UPSET WITH U.
Eh what?!