I think we Long Haulers tend to avoid the ME/CFS label as a coping mechanism: if Long COVID is something new and different then maybe we will all get better next month, but if we've all just got ME/CFS then getting "back to normal" feels further away than ever.
I’ve had cfs for 25 years, also had covid in March 2020 and got MUCH worse and haven’t recovered - basically long covid on top of cfs. It feels a lot like just a worsening of CFS but with some specific differences, like chest pains, which I never had with regular cfs. I developed CFS after another virus, Epstein Barr, so I suppose something about my immune system makes me predisposed to these conditions from some viral infections unfortunately.
100% right. I'd much prefer to put my head in the sand and wait than to associate it with me-cfs. I wish well to these people, but it is not necessarily the same thing.
@@alexandrecouture2462 The thing is, sticking one's head in the sand never gets you anywhere. Not claiming it's the same thing, but there is a very distinct and large overlap, just as there is with Lyme. Different pathogens may lead to similar disease patterns. Ignoring these patterns means ignoring existing research etc. Starting from scratch means missing all that existing research, instead of building on it and expanding it. It's throwing the baby out with the bathwater. And shooting yourself in the foot.
@@andocobo I've had cebv...chronic epstein barr virus since 2007.....after 14 years felt better for 13 months then got covid in March 2021...17 of not feeling well like a bad cold/flu....then for a week thought I was better then after that IT HIT ME HARD.....And now it's 9 months later and still bad and not working.....If it wasnt for covid I truly believe I'd still be better.....I AM SO MAD AT THIS COVID IT PUT ME BACK IN HELL
I was diagnosed with CFS 1993 and am now bed bound. It has been nothing but hell. I've come to detest the medical community due to such horrific treatment REPEATEDLY for decades. The harder I pushed for help the more I got labeled as a psych patient. Then I developed life threatening conditions and needed to push even harder - but still nothing. I'm living with a condition that is supposed to need immediate emergency surgery. I'm supposed to be dead. I probably will be, from this, at some point. I have been to UCSF and Stanford about this, and have seen dozens of doctors, but still gotten nowhere. I'm sure many of you are thinking that something like this isn't possible - and that I MUST be a psych patient. THIS CAN AND DOES HAPPEN. HOW? Original misdiagnosis from prestigious doctor or hospital - and then everyone believes this - and you must see DOZENS of doctors before finding someone who "will go against" original diagnosis by testing further. THEN once that has finally happened AFTER YEARS and you do get the correct diagnosis, NO REFERRAL is given for the needed surgery. I was told to contact the Mayo Clinic, specifically in Minnesota because it's so rare what I have, and they are the only ones experienced enough to deal with it. THEN I go back and forth with Mayo for months but going nowhere. Decide to try and find a local surgeon. They send me to a GI specialist - I'm thinking for this condition, for him to learn more before the surgery, but NO. They just wear you down with back and forth, and this and that, and someone new, and eventually you end up where you started and it's just a big loop. Now, if I had friends or family or anyone who could help to fight against this, I'd probably do better. But it's been 30 years of being sick and everyone I know is gone. It only takes a few years to lose most people. Especially if you are really sick from something that isn't recognized.
I'm so sorry to hear this K. I have a similar story but i've only been severely ill for a few years. It sounds like you may also have CCI/AAI. I've gone through the diagnosis route and hit a dead end with neurologists laughing at my scans and diagnoses, and telling me I just need to talk to a therapist to fix this ME/CFS thing. I don't think anyone hates the medical community more than a chronically ill patient.
I was just diagnosed with long Covid syndrome and it's a mess. But I hear your heart and pain you've suffered and wanted to share these with you; John chapter 1, verses 1-14, and Revelation chapter 21, verses 1-5. Be blessed!
@@desireoverpain Thank you, RJ. I was born with Congenital Scoliosis and have EDS so CCI/AAI is likely (plus ME/CFS so there are many things possible). I'm tired of trying to get accurate diagnoses. The only reason for wanting them was for the correct treatments - but I'm too worn out for those now too - unless it would be a quick fix, like medication. Anyway, I've only shared about all/any of this for the past couple/few years but think I should stop now as mentally I'm giving up - and that doesn't help anyone. But I do appreciate you being there.
Hello K, I hear your hurt.I am a 36 yr old women who has had a lot of mental,emotional and physical traumas.I have MS and am going through long Covid currently. Some days like today I am so weak all I can do is lay in my bed listening to things…I don’t have enough energy to watch them. I saw your comment and I wanted to respond to you. I want you to know I only have the strength to type this by the grace of God.Jesus Christ is the great physician lean on Him he won’t let you down. John 3:16-18 1 Corinthians 15:1-4 Jesus loves you. Blessings to you.
I was lucky that my CooL AF doctor handed me my entire file before they digitised the records. He said do want you want and return it (with a wink). So I removed all the misdiagnosed psych nonsense. When I go to my latest doctor I keep the issues concise and act like I'm part of the solution. I always say 'Look I know it's not your fault that the medical establishment failed to inform you on ME/CFS..." I offer to send him quality research and he likes that. Make their job easy, Remain sane, if we don't moan or be demanding they pay more attention. However if you get a non believer, firmly threaten to report them to the medical council or disability commissioner. That makes them pull their arrogant heads in!
My friend as ME and she's nailed my situation from the onset - like you Gez she's been a tower of strength to me during this dark time in my life- Thank you so much for all the research and man hours that you put into long covid on behalf of all us long haulers 🙏 Keep up the good work and I hope that you achieve some kind of recognition for all of your efforts one day 👏👏👏👏👏
CFS for 2 years, 15 years ago. The similarities sparked my interest in LC, which led to my self-diagnosis of LC, since my initial disease was so very mild, it never crossed my mind! Lessons learned through CFS served me well to recover this time. May God bless all who research, all who promulgate the information, and all who suffer ❤🙏❤
@@RUNDMC1 God gave me another miracle of healing - and he used you to point me in the right direction. Cant thank you enough for your excellent documentaries and interviews. God bless ❤🙏❤
@@wildhorses6817 Wish I could tell you but not only is it complicated, its individual. Pray. Do your own research. Read books. Watch everything on this channel. Find a great doctor. Take care of mental health, stress, family and friends. Pray. Abstain from alcohol, sugar, refined over-processed food. Spend time in nature. Find people who understand, like the facebook page "Long Covid Support Group". Pray. For me, the key to my recovery was addressing histamines with a strict diet of only fresh-cooked beef and butter 2x a day for 2 weeks, (then trying only one new food a day ), multiple antihistamines and a ton of supplements. May God bless you with your own clear path to total healing ❤🙏❤
You ask all the good questions. We’re so lucky to have you in our corner Gez. I was one who was against admitting LC was related to ME/CFS, but if it helps us we need to combine forces. I do think there is this additional microclotting issue that we need to deal with as well.
I've had long covid for almost a year now with chronic Fatigue , deep muscle aches , brain fog , PEM etc . However , the last two weeks I've noticed a change . I walk every day now for around an hour and I'm not relapsing afterwards . I started B12 injections about 6 weeks ago and wonder if these are helping . The fatigue isn't flooring me like it was either and I'm waking feeling better. I did a bit of gentle jogging today just for two minutes each time then walking in between . I feel I'm making step forwards but I've still got pretty significant issues with brain fog and cognition . It's heartening to hear of others that are getting better slowly . I really want to send all my thoughts, love and healing to anyone else dealing with long covid . Keep going xx Thanks for the video
@@RUNDMC1 still following the same steps to recovery ; meditation , breath work , probiotics , movement and careful exertion , anti inflammatory diet , intermittent fasting, addressing deficiencies using supplements and pacing
@@EllaSloman how often do you have episodes of brain fog i have the same symptoms drowsiness unable to focus headache l m only three months old Recpects..
@@yesminaozturk5338 I had very bad brain related issues after I caught covid and I couldn't talk properly and my coordination and balance were affected . I hadn't been vaccinated in January and I had a heavy viral load. I also had pneumonia and really struggled to find my breath. I still have brain fog and can physically feel the frontal lobe part throb normally when I've been busy or im exerting myself . It has improved though. I guess the best price of advice I can suggest is to try and put in place some of the suggestions on this thread to give yourself a really good head start to recovery.
My Long Covid mostly disappeared a couple of weeks ago, almost instantly like something within me had reconnected some circuit. I’m not sure what happened but maybe someone else out there can explain it. I feel pretty much back to normal after a horrible 20 months 😄
@ Wendy Lorimer I am really pleased for you, has your GP ever done any blood tests for you ? do you know what your inflammation marker levels were compared with what they might be know
@@fjspicer1 Thanks! i haven't been near the NHS since May last year, I was totally dismissed as someone who had fantasized being ill. The best help has been from these videos. After the video about micro blood clots I started eating more garlic, that helped me massively when the Covid hit my lungs initially and seemed to help again.
That's great news. There's a sense that these conditions are like a switch stuck in the wrong position. Prof. Ron Davis has mentioned that the few ME/CFS patients who have recovered do so fully. Fingers crossed! My one recommendation is to keep pacing for a while even if you feel normal. My own sense is that returning too quickly to full speed is one of the ways these conditions persist.
so many times I've thought long covid was behind me....and I've always been wrong. But I will say...I am still and have always been on an upward trajectory, which makes me feel like there will be an end to this.
Me too! Crashes are shorter, gentler and further apart and I'm able to tolerate more and more triggers and exertion. I managed a 5k without any PEM last week! While the pathology is obviously physical, the most helpful remedy for me has been consistent meditation and breathing exercises (meditation has been scientifically demonstrated to regulate the HPA axis that is mentioned in this video).
So sorry to hear of Dr. Tompkins’ death today. He was an important figure in the world of ME/CFS research. Grateful to have had him participate in this interview. Condolences to his family, friends and colleagues.
@@RUNDMC1 Still set on buying you a stiff drink and a belgian waffle? 😉, once we get to the other side of this situation. As I believe you're not that into Belgian beers..? Happy hols & warm regards Gez 🍀
Good quality & quantity sleep at the right time (nocturnal) is so essential for all our mental and Physical activities. Poor sleep can cause morning dysfunction. It is Important (and Interesting) to investigate Autonomic Nervous System functions, mitochondrial functions as well as CardioPulmonary Functions in Long Covid persons.
Super many thanks for this conversation, for having it and sharing it! It touches on many key elements, that even if noticed by others, are perhaps picked up singularly, rather than seen in the context of each together. Good that you discussed so many of the aspects, and put them together, also together with the metal aspect of this for the affected. Yeah, I hope the research on these multiorgan inflammatory illnesses (< for lack of a better term) get more research funding and 'fusing'. Having been a researcher, I could perhaps speculate that the previous highly specialised view of science, where people look at one discipline at a time, hasn't been so helpful for illnesses that work as a cluster of afflictions, affecting different parts of the body in primary, secondary, tertiary, etc, was. It's like trying to decode a network of effects, than trying to find the linear cause-effect relationships limited research foci leads people into. No criticism of medical researchers or staff here, I think it's just that, as with many evolutions of fields, it's perhaps time to add another paradigm, and a few more dimensions, to research. --- Forgive me if I add some personal medical anecdotes : I've had mecfs, specifically the 'multiple chemical sensitivity' part of it, since 11 years. Can hardly be indoors anymore. I'm thankful to have had some pro bono testing by a Finnish specialist (there are *many* cases like mine in Finland, where I got this after working in a building that used to be a ceramics factory, with a history of handling heavy metals). Since I started taking some of the nutritional supplements the doctor recommended, I crash less often. However, with time the autoimmune effects have gotten stronger. So i react to heavy chemistry and biology a bit faster, but also recover faster. Not sure that's considered an improvement. I had the money to do a deeper blood analysis with specialists in Berlin, earlier this year, finding traces of heavy metals in me, plus lots of biomarkers indicating autoimmunity, low blood oxygenation, and leaky gut syndromes (despite eating probiotics quite heavily). If you like, I made a google doc with my blood tests and associated explanations, plus some notes on associated medical costs. Will happily share these (here) if you like.
I think you are correct about the reductionist Traditional Medical paradigm being incorrect for the study of Long COVID/Chronic Fatigue Syndrome/ME/Fibromyalgia/Lyme Disease. Its inability to treat these afflictions has lead to the Psychiatric diagnoses that stigmatize patients. The Functional Medicine paradigm, which treats the Body as an interconnected ecological system of organs & microbiome affected by nutrient deficiencies, pathogens, and environmental toxins, is a much better approach. Dr. Mark Hyman discusses Functional Medicine on his UA-cam Channel, and treats patients at his UltraWellness Center. I find the association of diseases like Long COVID with Autoimmunity interesting. Hyman often discusses how autoimmune disorders initially arise from a Leaky Gut, which allows foreign proteins or pathogens to directly enter the bloodstream, bypassing the digestive process, and cause a dysfunctional Immune System response. Similarly, a Leaky Blood Brain Barrier has been proposed by others as how these proteins or pathogens enter the Brain, causing Inflammation that results in dysfunction of the Autonomic Nervous System, a proposed cause of Long COVID. If this is the case, any treatment of Long COVID and similar diseases must restore the integrity of the Blood Brain Barrier and Gut to be effective.
THANK YOU THANK YOU THANK YOU - YOU ARE SO INCREDIBLY AMAZING IN JUST SO MANY DIFFERENT WAYS! I've been following you since almost the beginning and am so incredibly impressed. I was really wondering what direction you'd end up taking. When I first learned about Long Covid I was shocked by how similar the symptoms were, and I wrote about it in my CFS and EDS groups, and was so surprised that some people were angry about it. I was hopeful for the first time in years but they didn't see it this way. The bottom line is that Long Covid IS different and unique BUT that it also is, and will be, in the same basket as ME/CFS, Chronic Lyme, and EDS - and for good reason - because these all create the same medial conditions. I can understand people not wanting this, for many reasons, but we need to work together to get the help we need. We will be fighting against something that's been deeply ingrained for many decades. I apologize for my previous post and for my negativity - I know it's not helpful - and deep down I just want things to change, and for everyone to get the help they need... but I'm just so angry and damaged that I couldn't write what I am now without getting that out first. AGAIN, THANK YOU, THE THINGS YOU ARE COVERING ARE SPOT ON, YOU COULDN'T BE DOING A BETTER JOB IF YOU TRIED. YOUR UNDERSTANDING AND COVERAGE IS JUST AMAZING. THANK YOU TO EVERYONE. WE MUST JOIN AND FIGHT TOGETHER FOR EVERYONE. NO ONE GETS LEFT BEHIND.
I remember the gaslighting towards those with yuppie flu back in the 80s in the UK. 'Long' after effects from 'viruses' (assuming viruses are the issue here, the science on that isn't even clear) have been happening, ignored or denied for decades. If you have long covid you MUST learn from the past. The fact that this video started with warnings not to get the pitchforks out by comparing to past diseases was astounding. And a sad reflection on today's society.
Unfortunately there are way too many pitchforks around this subject - but it is a reflection of the way sufferers have been treated for so long (amongst other reasons)
Thank you for the video I’ve had CFS for decades stemming from the adult chicken pox. It’s been miserable and a struggle. At least long Covid is shedding light on the condition and therapies
Me too. Onset at age 20. Use CVS as an umbrella term but more accurate would be to call it post varicella rather than CFS which is a highly heterogeneous group. Varicella is a well known cause of disability, especially in adults. This is a post viral syndrome but few physician's have understanding of that.
I have had ME for 23 years, mainly severe last 16 years, bedridden last 9 years. This illness has been so badly stigmatised and wrongly framed for decades depriving the illness of significant funding for biomedical research and in turn cruelly leaving patients with no hope that at least considerable efforts were going in to finding effective biomedical treatments. As Ron Tompkins says this is also why there is little to offer this new cohort of long covid patients that seem to share similarities with ME.
Excellent video, ME sufferer when aged 26 yrs, now 64 yrs old.Took 7 years to get back to about 95 to 98 % right, still need to keep eye on energy level. My recovery was concentrating on getting my stomach bacterial right , which foods suited my system. Plus I also had some colour therapy. You know if you have ME , one of the main feelings is your life force energy is draining from your body plus all the other variable symptoms. Keep up good work, when I heard of long covid my first thought was of the connection with ME . Let's hope there are benefits both ways.
Lance hi! Was your recovery from ME strictly focused about addressing the GUT and pacing? Glad you almost recovered! 😊 I am 24 years old, 5 months into it and it’s a living nightmare. Doing my best to gain the knowledge to improve. Thanks for your kind attention!
@@niccolowrld hi Niccolo, thanks for your comments mate. Main concentration was getting gut right , you know when your stomach feels right, cut out fats and dairy and some wheat. Lost 2 and half stone. Once I felt semi recovered I could start eating my previous usual foods. Definately no exercise. Listening to your body and working out best approach. Colour therapy helped too. All the very best in your recovery Niccolo, The plus side is you know that you have alot of determination which will help with your life going forward 👍 Kind regards Lance
@@lancemacdonald1819 Thank you so much for your kind answer and I am very glad you are doing better and have a second chance at life. Best regards, Niccolo.
New subscriber w/ME/CFS & Long Covid. Thank you for bringing this caliber of expert to address ME/CFS in the Long Covid conversation. It's important for so many reasons. I am outraged that the very institutions responsible for the deliberate denial, stigmatization and underfunding of research of "Chronic Fatigue Syndrome" are now in charge of this disease. The whole interview needs to be heard. Yet I am drawn to comment on his closing chapters where he artfully demonstrates a level of self-restraint I can only respect. He so briefly touches upon the stigmatization of CFS. Not only of patients but of the experts who dedicated themselves to it in the face of discredit and institutional denialism. Those now HIGHLY CREDIBLE EXPERTS, as they should be so recognized. Are being sidelined and quietly dismissed as these same agencies pretend to proceed in our best interests. RECOVER it seems instead is funding up-and-coming "new groundbreaking research" with new "experts" who have no experience at all with the disease. Why are they trying to squeeze out the experts? Is it simple institutional embarassment and coverups? Profit motivations? Who benefits from this stragey and why? I imagine it is risky for anyone in the medical field to speak out against those institutions. The media isn't covering the issue. The American public must not allow the CDC and NIH to have a "do-over" or "save face" by splitting this into "two different diseases" while covering up mistakes of the past and ignoring the progress that would save lives and livlihoods now.
Interesting on his response to BC007 and how they weren't keen to team up in the research. I'd love it if you could get an interview with those guys. Great video though Gez! You definitely help to keep us going.
@@RUNDMC1 I asked about this on Twitter and Berlin Cures responded. They would very much like to get in contact with the OMF. Could you pass this on to them, Gez? Thank you!
I appreciate what you’ve been doing for us, Long-Haulers. I’ve been suffering from Long-Covid for 11 months. Unfortunately, I couldn’t go back to work. I have developed a routine for making my days acceptable, among other things nettle tea in the morning, eating meals with low histamine and so. Nevertheless, that would be nice to see your daily routine. I wanted to start a channel about what makes my days better. Nevertheless, I’m still pretty weak to do it. Besides, I’m not a native English speaker.
Thanks for this video Gez. I think it’s so important that people with long covid don’t further stigmatise the ME/cfs community. I got long covid in Feb 2020 and was very happy to learn from people with years of experience with me/cfs and if you search you will find so many positive cfs recovery stories and useful bits of advice. I also was referred to a cfs doctor who’s spent his life treating fatigue, who is so understanding, much more so than the long covid clinic I initially went to, he’s also been able to prescribe things the long covid community know less about. At the end of the day the label is just a label, what’s important is moving forward with whatever symptoms you have. Many people with cfs fully recover and some do so quite quickly within a year or two, the main difference in my eyes is that they might have started with a different virus or infection.
Thank you again Gez, been finding ME/CFS UA-cam stuff most useful, pacing and diet etc. Looks like you’re also keeping an eye on heart rate via a wrist watch too… the exercise intolerance and post exertional malaise is a right bugger if mine gets too high for too long. It’s getting on 20 months of this tightrope walking ain’t it.
Sometimes I feel like I am not really in better condition than 11 months ago but recently, I received comments of people that I look in better health and almost normal. Last week I had 4 good days in a row, followed by 2 bad ones where I needed to sleep a lot. It is a bit more manageable, with good days and my bad days aren't as bad as they were. IVM definitely cleared 2 of my symptoms: GI aches and being near nausea in the morning. It only helped temporarily with my energy level, but it's better than nothing! No miracle in sight, but with times, it will more than likely improve.
My sense: Body systems get down regulated after a shock/trauma that drains resources, then gets stuck there due to varying reasons, but mostly due to a body system that was already compensating; therefore not able to fully recover (aka the cliche "Type A" personality that was already burning the candle at both ends, paired with incomplete nutrition, before and after the initial trigger, and lack of social supports). Of course the same result can happen with different processes/causes. Im grateful for anyone researching this and providing PROOF that things are awry in the body; instead of it being a psychiatric problem or worse yet, just some sort of character flaw. Physics Girl's long covid struggle has been informative to watch. Her video about the Stellate Ganglen procedure, essentially numbing nerves in the neck (and interrupting the "stuck-on" trauma response) makes sense to me why it could help. Great interview, thank you.
Thank you Gez, as always! I heard you mention in an interview that you were on anti-coagulants and had been feeling better, are you planning on a video to cover anti-coagulant regimes without the use of apheresis? I am interested to hear the results of Dr. Jaco's research and am consulting my cardiologist about going on them myself.
@@RUNDMC1 I hope you don't mind me asking, I am also from the UK and wondering who you have found that is willing to treat you with anticoagulants? I am more than happy to go private as I have quite frankly given up on the NHS. :)
Thanks again, Gez. I know very little about ME/CFS but wasn't it said that sufferers are predominately women? It seems to me that there's a stigma attached to any disease/condition suffered primarily by women overall. My theory is if men were primarily affected, much more money for research would be forthcoming. Apologies for my jaded opinion. :)
ME gets triggered by meningitis, glandular fever, other serious infections. At what point are we going to accept that many of us have just developed ME.
M.E. is caused by coxackievirus. CFS is defined as having no known etiology. The cfs group hijacked the M.E. dx in the late 80s to try and legitimize their condition. Let me say it plainly: M.E. does not equal CVS. This is flawed logic and is like saying malaria equals dengue because both share the symptom of fever. The false equivalence has ruined M.E. research.
I agree, a lot of Covid long haulers may very well have ME/CFS. But a large section also doesn’t, for example people who are mainly plagued by blood clots and whose weird symptoms go away once they deal with the blood clots.
M.E. is caused by coxackievirus, CFS is by definition unknown etiology and long Covid is well, caused by Covid. It is one of many post viral syndroms. Therefore m.e. doe not equal CFS and long Covid is not cfs or m.e. malaria is not dengue just because of similar symptoms. Etiology. DEFJNES disease.
I have been dealing with long covid for months and months as a young man. What seems to have helped is doing "all the right things". The frustrating thing is the benefit wasn't immediate. Unlike before covid, where if I ate right and got sunlight and the like I'd immediately feel better, I would do healthy habits and it would take weeks to really see results. Your body needs to heal, and because it's so disorganized it has a hard time healing. As of now I'm still not 100%, for example, my HPA axis is still clearly wonky. However, I'm going for runs, I'm lifting weights, and I'm not crashing just from doing daily activities like I was. A huge one for me was walking. I introduced it really slowly, and any time I felt like I was pushing it too far, I'd stop before I crashed. Mild walks went on for months, until I finally felt ready to try going for a light jog. I was so deconditioned that what used to be a warmup before covid felt like a full workout, but I didn't crash and slowly I got my cardiovascular fitness back on track. The important thing is to not "overtrain", even when it comes to non-athletic activities. Just as when an athlete exercises more than their body can recover and they slowly get worse, the same thing seems to happen with long covid. Our energy and tissue recovery systems are greatly weakened, and so you don't want to risk further damage by exceeding them.
@@stormshadow9026 Hi there - You have to eliminate anything that contains Barley Rice Oats or wheat from your life , it can be found in lipsticks sauces drinks and all kinds of foods. Alot of the symptoms are just like ME/CFS too. I no longer recognise my life like most of us long haulers. I hope things begin to improve for you Storm - it looks like we both have life long conditions now from Covid 19 doesn't it 💔🙄
I wish this guy elaborated more on his answers. It kinda left me wanting him to talk more and Gez was the one talking with more enthusiasm and energy. I dont blame him though when the ME community has been disappointed for decades. Makes me wonder..
Thank you for this informative interview, time watching your channel is always time well spent. Abstinence from histamine triggering foods, sugars, processed carbs, junk foods, and alcohol consumption has been a fast ticket back to a level of "normalcy". I still have long haulers, but the symptoms are background noise compared to the debilitating symptoms I had been dealing with prior to adapting this lifestyle. Daily I take supplements for mitochondria support, and other supplements.
Gez, I would really like to hear more about the "corticoid inversion" Dr. Thompkins mentioned. Like you, I wake up feeling trashed. I come to life around lunch time, and feel my best when I should be going to bed. Not easy to find more about this just doing web searches. Huge respect to you for all you've done and all you are doing. You deserve an Honorary Knighthood!
It’s your cortisol cycle…normally cortisol is at its highest in the early morning to wake you up. It should be at its lowest at a reasonable bedtime. The best way to find this out is through a 24hr saliva cortisol test where you’re given 4 sterile tubes that you spit into at specific times of the day. You freeze the tubes, mail them back for analysis, and they send you a report where they chart your cortisol levels for you. Overall, cortisol levels are on the low side in both LC & ME. The pattern might show, for example, that your cortisol levels are highest when you should be sleeping and lowest mid morning.
@@paulineroberts1815 Hi Pauline! First you need to find out what your cortisol level is and its pattern. It takes time and a lot of work to address Adrenal Insufficiency (aka Adrenal Fatigue or Adrenal Exhaustion) and it’s important to learn whatever you can about it. Also make certain that your thyroid is working properly since there’s a close relationship between the adrenal and thyroid glands. My cortisol was low (not so low that I had Addison’s Disease, but I had severe Adrenal Fatigue/Adrenal Exhaustion) and my pattern was pretty much opposite of what it should be. I had to set up a schedule for myself and stick to it, which was really hard for me because I had always been a night owl. No eating after 7p, in bed by 9p, take up meditation, stop all stimulants (very hard to quit caffeine), avoid all unnecessary drama & stress, make certain that you don’t have any nutritional deficiencies and take supplements to maintain, eat whole foods, take adaptogens (herbs that help you deal with stress & support the adrenal glands), make sure to incorporate a lot of quiet time and time for the things you enjoy into your life, bombard your senses with pleasurable things…listening to music, smells you like, soft, comfortable clothing, relaxing baths with epsom salts, massages, etc. In some ways I was lucky to have it when I did because this was pre-internet (yes, I’m old 😉) so I didn’t have the temptation of social media, but if I did I would definitely stay away from it. I also took up taiji and other Daoist arts…gentle, soothing exercises rather than anything that too taxing. I discovered that there’s a window of time right around my bedtime that I get really sleepy, but previously I had been pushing myself to stay awake past that window and would then get a second wind and be up until the wee hours of the morning. If I go to sleep during that window I feel much more rested and wake up pretty early in the morning. The same number of hours of sleep isn’t the same if it’s done later at night until later in the morning or into the afternoon. You also don’t want to eat anything within a few hours of sleeping because even though you may be able to fall asleep, your body is still working hard to digest your food so the quality of your sleep isn’t as good. I also worked closely with my doctor who’s a traditionally trained internist, but also has extensive additional training in functional medicine. He prescribed a low dose of hydrocortisone which I took for a while. It gives your adrenal glands a bit of a break so they don’t have to work so hard and can heal. At that time there were very few doctors who were willing to prescribe hydrocortisone, and I don’t know how it is today. You used to be able to take a glandular OTC called Isocort, which was similar (but not as potent) to taking hydrocortisone, but they no longer make Isocort. I believe a few supplement manufacturers distribute whole adrenal glandulars or combinations with adaptogens, but I don’t know of brand names. Ideally you want sheep adrenals followed by bovine. With hydrocortisone I just felt a bump up in energy…nothing very dramatic. But it was enough to help me with the crippling fatigue and exhaustion, and allowed me to do more than I had been. The trick here is not to overdo it, which is incredibly easy to do. You get excited that you feel better and you want to make up for all the things you’ve been missing out on or had to put off. That’s the trap you have to avoid or you’ll be back to square one if not even worse. I’m losing steam myself, but feel free to ask me any questions you have and I’ll try to answer you. I remember first learning about Adrenal Fatigue/Adrenal Exhaustion and thinking that there were some things I just wouldn’t be able to do. Ha! This illness definitely shows you who’s boss and you can either do everything required to heal it or keep getting worse. It’s very humbling.
What are the h1 and h2 blockers? How do you go about suggesting meds for LC to long covid clinic? They dont seem to know anything its more of a glorified helpline at this point. 11 months in now i feel brain damaged. Thanks for helping me feel real ish.
He’s referring to 2 different types of antihistamines - one blocks the H1 receptor, the other the H2 receptor. You can generally buy H1 blockers over the counter, like Telfast, Zyrtec etc., H2 blockers usually require a prescription. You can also get higher dose H1 blockers via prescription.
I’m 34 and dying in a hospital bed. I was ultra fit and active last year. Connective tissue failure, NMO, Lyme Disease positive at Mayo, and Craniocervical Instability…looking for something to stop atrophy and weakening of tissue. Will need repair of neck and more.
I was just diagnosed with long Covid syndrome. While it feels like slow death, your situation seems like a much tougher issue but you sound strong. Check out the book of John, chapter 1, verses 1-14. And read Revelation 21, verses 1-5.
Aha now I understand why Cognitive Behaviour Therapy is recommended to help with CFS (on the NHS website) and why I found it completely useless. The therapist was like ‘oh, you have nothing going on in your life outside of work’ and then signed me up to various groups. Whilst I repeatedly explained that the only energy I had I had to use for work and holding down a job.
I have had long-COVID for 22 months; I have lived with ME/CFS for 40 years (since age 17). They are not the same. Similar, yes. But I describe long-COVID to my family and friends as ME/CFS with fangs. I can't explain the difference in scientific terms, but my body certainly feels the difference. Amidst the superimposed terror of the COVID symptoms, the familiarity of the ME-type symptoms have been my glimmer of hope that someday maybe the COVID fangs will loosen their grip and just melt back into "normal" postviral ME/CFS where I can at least fake having a life. Over the last several weeks, the most vicious of my long-COVID symptoms seem to be receding, and my hope for at least a partial recovery grows a little brighter. Maybe by this time next year I will be back to the usual weak and wobbly but functional me!😁 For now, I am grateful for any improvement, no matter how minuscule. And I am especially grateful for your wonderful, hopeful, factual, balanced research and interviews and the discussion and conversation and collaboration that they foster. Thank you, thank you, thank you!
I’m in the same situation, had CFS for 26 years and now also had long covid since March 2020. For me long-covid is very much like a worsening of CFS, good days now are more like what bad days used to be. There are a few new symptoms - chronic chest pain, chronic cough - but for the most part it feels like a general worsening of CFS for me. My capacity for any kind of activity has probably dropped around 70% below what it was with just CFS, which was probably around 30% of normal. I personally think the mechanism is either the same or very similar in both conditions.
Nancy Johnson your story is my story. Also had ME for 40 years and LC for 22 months. I,liked what you said that it is like ME with claws. You are so right. I am really battling. Luckily my husband has taken over the shopping and other things that I was able to do with ME but can't do anymore. I was 32 when I got sick and am now 72. Take care.
@@andocobo I believe you’re right about the same or a very similar mechanism causing both LC & ME. I’ve had ME for 30+ years and I believe the trigger for me wasn’t a virus, but instead a systemic fungal infection that set in after far too many antibiotics beginning as a kid through my teenage years and into my early twenties for chronic tonsillitis, then acne, and then chronic strep. My microbiome was destroyed when I was a child! The microbiome is being called a biomarker in both LC & ME.
Thankyou for this ! Very interesting ! 20 years with me/cfs after infection. I was super fit and loving life! I suffered hay fever terribly when I was younger so much I had to have injections and was bed-bound, the mast cells make sense, it was on the cards for me. I recently got covid , I am unvaccinated due to being scarred if a relapse ha! How stupid I am! I’ve never been so I’ll. I am currently waiting for a steroid injection that my consultant said will help me as he definitely said ME has an autoimmunity. Everything that’s been said here is spot on ! Thankyou xx
Gez, I hope you took note of his comment that testosterone is anti-autoimmune, which could (as I have said in the past) be an explanation for why Long COVID affects women more and why my cancer treatment, involving suppressing testosterone, was why Long COVID hit me so hard.
I must admit, I always find it a bit comical, albeit sad, when I hear physicians and scientists from places like Harvard talking about concepts that we have been discussing and treating (and historically being ridiculed for) in functional, integrative, and naturopathic medicine for 30-40 years as if they are "new" concepts. Don't get me wrong, I am glad they are, and they are well intentioned, but it is ironic at best. Gez, I do think, at least in the States, they have looked back at CFS/ME research and treatment history as we approach Long-Haul. However, the research of CFS/ME has not yielded substantial or complete answers, nor have treatment approaches been substantially effective, and certainly far from curative. Therefore, I look at this the other way around. I don't have great faith that the former work into CFS/ME will solve or significantly inform Long-Haul therapeutics, but that the new aggressive work into Long-Haul will ultimately inform our understanding and treatment of CFS/ME. That is the hope anyway!
I and others will remember that all the credit goes to you and people like you. You are very important. I only hope that good people find you since the majority are the regular doctors.
Having had ME for years I have always thought long covid was me. The only difference being that people with long covid Knew exactly what virus caused their ME/illness. I do believe that if they are same or different each can help each other. There must be a connection there are so many identical or at least very similar symptoms. I feel people as a rule have a better understanding of what long covid is compared to ME and over the past couple of years have said when trying to explain my condition it’s almost identical to long covid. Until recently I had never heard of MCAS and having read lots about it I do wonder if that’s partly to blame for many of my symptoms. I have also discovered there is a gp who tried to set up a clinic for ME/Long Covid but the Scottish government didn’t allow her to proceed. There are no such clinics in Scotland but she has set up a private clinic but then writes to your gp with suggested tests and medication based on you symptoms. She was forced to set up this clinic privately due to the lack of government support. I am seriously thinking of going to see her. If it gives me a little of my life back I am absolutely up for trying it. I have heard you talk about the same thing and it has helped you. Claire xx
Why should not long covid be ME/CFS if we consider that what triggered the sickness for many ME patient has been some kind of flue or similar. We got covid that triggered ME. Can’t see the difference really. As usual great videos Gez.
At 33 I was young healthy and full of life until I came down with a virus. Within 3 months I had to quit my job, my life pretty much ended or at least the life I knew. . Fast forward 32 yrs later I function at about 30% unless in a flare then my function level drops to pretty much zero. I have a classic case of me/cfs. I have been mistreated, made to feel quilty by the medical community. I could write a book on the stupid things to say to a me/cfs patient. My life has been stolen.. I would love to be part of a study. Not so much for myself because I feel it's to late to ever recover but to help others. One thing I will do for the rest of my life is not be bully into doing graded excise. It's a killer! Pace pace pace like your life depends on it because it does!
I’ve read about MECFS getting better w DNRS . Am damned and determined to utilize DNRS/Gupta, along with diet and lifestyle changes, to get better as well. Believe COVID causes brain damage putting you in constant state of fight or flight and the brain needs new pathways/connections to get out of it.
@@RUNDMC1 I'm cautiously optimistic but after 9 sessions, I've gone from average daily 02 levels of around 88 up to 99-100%. So it is doing something. I'm just not sure what yet.
You forgot the well established infections, usually EBV, CMV AND HHV6. These may be secondary but are certainly driving the continuing pathology as proven by Lerner, Montoya and Kogelnik
IMHO CFS/ME and long covid are the same condition but with different names due to the different 'final straw' or last known stressor to break the camel's back. The thing making most sense to me from what I've read is that chronic fatigue symptoms can be caused by ANY kind of stressor which depletes the body's reserves of glutathione, it could be a car crash, a bereavement, a serious illness, mercury toxicity, mold, tick bite, gut dysbiosis, EBV virus or covid virus or any combination. Anything depleting glutathione leads to the mitochondria not being able to make sufficient ATP - hence we never have a continuous supply of energy. Hence when we rest, the body makes a bit of ATP, but once we've used it up, we have to wait until it makes more. These thoughts come mainly from Dr Rik Van Konynenberg and Dr Sarah Myhill. Mae's et al did a study and put CFS/ME patients on a Paleo/leaky gut diet with a few supplements. Something like 80% recovered in 14 months. The study attributed the success to the LG diet ... The only thing is, they also gave n-acetyl cysteine and alpha lipoic acid (think it was ALA) which are known to support glutathione production so recovery could have been due to restoring glutathione levels 🤔. Konynenberg says that as well as restoring glutathione you still have to deal with whatever is depleting it, e.g. mold, mercury or reactivated virus. But the good news is, some people have success with natural antivirals. Oh yes, some people recover by fixing the gut but guess what, a healthy microbiome supports glutathione production.. If nothing else, this area is worth research. I daren't say it will work for everyone but speaking for myself I'll try just about anything ... but not a fecal transplant 💉 😳. ME/CFSer, 19 years and counting.
I feel like I should take screenshots of my comments to you on your first videos of LongCovid about ME/CFS.. Looks like the message has finally been received and acknowledged. I hope we can continue forward with the biomedical approach and leave stupid pseudoscientific bs like brain retraining behind us now. If the person with a MD or PHD cannot provide an objective measure or a biomarker of some kind of what they are speaking about in regards to LongCovid or ME/CFS, they are not worth interviewing.
@@RUNDMC1 It's a huge part of the problem. I want a diagnostic test first and foremost. I think fundraising, and advocacy should be concentrating on that. Dr. Ron Davis potentially has that in the Nanoneedle with electrical impedence, but we need. to get it funded to find out. However, there is no diagnostic test for ALS either. But it is still researched, funded, and accepted as an illness. Ultimately, ME/CFS is held outside the normal rules of play in terms of how we judge it. That is also the problem. I would love to see you interview Dr. Ron Davis and Dr. Rahim Esfandyarpour (UC Irvine) about the Nanoneedle and its potential. med.stanford.edu/news/all-news/2019/04/biomarker-for-chronic-fatigue-syndrome-identified.html
Please tell me what is ME?? Anyone. Thanks in advance! I heard the CDC (USA) will me doing research on long covid & chronic fatigue, together. Let’s hope they can help figure all this out. Thanks you for all your help and all you have done on this topic. I hope your feeling well.✨
... as a German Biologist - this is about conditionings of our Life Styles - where we are flooded with stuff we have no idea what long term effects they have. Already in the 1970´s we had a fast increasing number of allergies, Neuro dermitis, neurological consequnces of immune reactions... and then the sudden impact of new viruses and allergies - that will strike millions of persons in a precondition on the way to allergies, auto immune reactions and reduction of resilience to regenerate from exposure and stress. It is our modern Life style causing this - as long as we are living in a way like drug addicts consuming the Dope of modern Society - we enhance our self extinction...
It's now two years, and if it weren't for the periodic stretches of feeling great, and feeling back to normal, I'd throw in the towel. Yesterday my physician and I agreed to my enrolling in a long hauler's program with a university medical center. Just when I think that I have it figured out, and my health seems back to normal, my energy levels are where they should be, something will upset the apple cart (like a cup of herbal tea) and then I experience a major reaction.
@@RUNDMC1 I greatly appreciate your honest and your candor. Your YT Channel has been one of answeres and solutions. Thank. Yes! It seems defeating at times, but if we stick together we can get to the other side of this. I hope that you are saving your notes for the great novel that you'll write about your experience.
I'm yet to hear of anyone studying the effects of ME/CFS on people who have been affected for longer than 20 years. I'm a 40 year veteran and in that time, suffered many other symptoms that may, or may not be, related to my dx. Obviously ageing plays a part, but I'm sure there's other, unrecognised clues.
People that are diagnosed with ADHD are more than likely to suffer from constant fatigue and tiredness. The literature estimates that this effects 60-70% of these people. I can't find any models related to the cause of this for people with ADHD. Is it related to any of the models of ME/CFS?
@@RUNDMC1 Yes, it's so sad. Suddenly he was gone. Mr. Tompkins was a very passionate and empathetic person. I think you got the very last interview with him.
He keeps saying corticoïdes although I believe he means corticosteroids. What’s actually happening is overall the cortisol levels are low and the 24hr pattern is often off track. Anything that impacts the adrenal glands is also going to impact the thyroid gland.
Me, too. I completed the 14-panel cytokine test with a high score on the long-hauler's index. I trying to at least find some people who have been through this protocol to see what to expect. That would be just anecdotal, but better than nothing. I hear that 1600+ people have been treated but no published statistics about the results. If this works so well, why is there nothing in the literature about it? It would be "standard of care" by now. Not expecting 100% success, but I would like to know the odds before diving in. Does anyone know of someone who has been treated by Dr Patterson's protocol who is willing to talk about it?
@@bradsalz4084 I too received a high score and met with Dr Osgood. Next step is to pay out of pocket for a primary care Dr that can prescribe me miravorioc. They say their database is 12k patients and they are currently treating 2k. We know that most long haulers are getting better on their own so is their treatment really working? Also I read a lot about long haulers scared of permenant long term effects...we don't know but my opinion is that we will fully recover with no long term issues. Stay positive everyone.
@@kfamilyvideos1 Exactly! You would expect people to improve over time even in the absence of treatment. What is required is a formal study where participants with similar cytokine scores and presentation of symptoms are assorted into two groups, one which gets the protocol and the other which gets "standard of care" which right now is not much. Then we can see whether treatment is worth the expense. On the other hand I cannot believe that they are doing harm, for if they did, state medical boards would be shutting them down as quackery. Have you asked for statistics on the 12K people that they say they have treated? Or at least names from that list of people willing to talk to us?
@@bradsalz4084 no I haven't asked.... My body tends to get worse when taking statins, niacin, fluvoximne, etc. They want to give me fenofibrate in place of statins and miravorioc. Given my history, I have a feeling I wont do well with those drugs which makes me consider that it may all be snake oil. I appreciate gez for allowing us to have conversations like this on his video thread.
@@kfamilyvideos1 Yes, it is great that we can have this dialog here, although I wish there was a more centralized place to hold these discussions about long-COVID, so we don't wait for video post to spark conversation. Speaking of Miravoric, another CCR5 antagonist that Dr Patterson was promoting was Leronlimab. It seems to have made it to at least a phase II trial and then disappeared from discussions without any explanation I could find. I don't know if it is all snake oil but we certainly need more visibility. Are there other long-COVID or ME/CFS researchers citing Dr Patterson's reseach? If not, why would it be ignored for so long? Are other long-COVID clinics using his test panel or copying his therapy? If not, why not? These are reasonable questions that need answers.
Have you heard of somebody who did not have covid, having long covid afterwards? Sound strange, but i didn’t have symptoms, but my IgG test appeared reactive, meaning i had covid. Since 6 months i’ve been through a rain of different symptoms, such as 3 episodes of vertigo, Neuropathy on cervical, with terrible spasmodic pain, fatigue, and lots more. Seen lots of dr, seeing a psychologist now, seeking for a fibromyalgia diagnosis. As I feel rather better, it begins the storm again. I’ve been vaccinatex with coronavac , 3 doses, last in october. I blame on vaccines. I’m 66, hipertense, but healthy before this. Tired.
@@RUNDMC1 thanks Gez! I thought i was a rare case. Drs here in Chile are rather suspicious on long covid.. i made my own research and finally find a dr who supported me and we are looking for answers. In my case I am finding that every time I feel in highly emotional situaton, my body collapses with different symptoms abd i hsve to rest afterwards to become myself again. It is diffcult to the family to understand, the think thst is “my age”, “ my sensibility” or whatever and that leads me trying to not telling anything of what happens to me. It is a lonely issue. I am an artist and that has supported me better than anything. Have you heard of Dr,Loh, in USA, and her investigations on vit C and melatonin? Follow het on Facebook. Thanks Gez for your answer. I’be here. Be safe.🌺
I am about 22 months in.. I have gotten much better with antihistamine diet and lots of supplements. I still have crashes once every few months and my immune system is not good. What is your protocol for supplementation? Linda
Has anyone tried IV fluids for LC? Listening to Dr Been talk to Dr. Berkowitz, he brought up IV fluids for POTS, not a cure but a temporary reprieve. I am curious if anyone here has tried it? Not sure how to get it prescribed in Canada, I have a doctor's appointment next week and will bring it up. Seeing as how better blood flow = feeling better with the supplements I have tried.
The problem is definitely psychological. Doctors are too weak psychologically, to admit that they haven't got a clue. Inventing psychological weaknesses in the patients eliminates their need for them to confront their own.
@@christiangranqvist2350 Addressing the psychological weaknesses of patients has very controversial results. The eventual psychological weaknesses of doctors, which are likely to be playing a huge role in the suffering of many patients, needs to be addressed just as openly. They need to get over themselves, is the bottom line.
@@robinhood4640 that’s definitely part of the issue - I’ve had doctors do this to me dozens of times, literally just make shit up to save face. It’s appalling behaviour, but very common.
I would also like to know. My best guess is your body trying to get as much healing stuff to the parts that got hurt because of covid so healing could take place. 💐
@@anna-marieeasmus7529 yeah I think it's in survival mode, trying its best to bring nutrients and oxygen to the organs, but what I don't get is why my great saphenous veins are still bulging 17 months into it. It seems something is still causing it to be dilated (?) and I wonder if the immune system has something to do with it? Viral persistent? Mast cells? Sticky blood/micro clottings like OP said or is it something else?
Probably something of everything. I am still bedbound after 20 months, so chronic or recurring infections definetaly for me. I had bloodclots last year and were on bloodthinners. I still had bulging veins. I had negative bloodclot test in September but bulging veins and other symptoms still persistent. 💐
Long covid is a new post viral condition, but a certain percentage of patients will develop ME/CFS (85% of ME/CFS cases follow a “long” post viral syndrome whether covid, sars, west Nile, EBV, CMV etc). Some will not develop it & will have just the chest/breathing issues. Others will simply recover from their post viral fatigue (as a decent percent do every year). Hopefully this is the wake up call for research though, as the history of ME/CFS & other “long” conditions is horrendous in its dismissal, neglect & total lack of funding by the medical community.
Does anyone notice this?? When perhaps having a small crash, or setback and feeling fatigued...my urine is very clear if not a tad green. And when I'm feeling normal, it's yellow...like always. Is it just me?
I have not associated it with crash or not, but quite often my urine is very yellow, with a strong smell of cinema popcorn. I had that for many weeks 10 years ago when I had a food poisoning due to not enough cooked chicken in a restaurant.
@@alexandrecouture2462 mine has a different smell when it's very yellow too...and not much of any smell when it's clear and I'm fatigued. Gotta be something to that.
I feel like the medical community is too hung up on doing and accepting only the "perfect" research. It will never happen and time is a wasting. With long covid, there are so many hypothesis I think the dart board approach to see what sticks is the only way this will ever get solved, just like any discovery usually happens. Essentially that is what we are all collectively doing on our own, but without collective evaluation, prescription drugs and medical equipment. We need them to quit spinning their wheels and get it going.
If SARS COV2 better replicate at low tissue temperature in different tissues ,after what say Christian Drosten a year ago atTWiV Nr 659 at min29 ,low body temperature enhance ,theoreticaly, this virus replication. Thermogenesis can be lower If muscular tonus are low, like in rachitism. Night body temperature decrease, especially If muscular tonus decrease. If ,,low temperature agglutinine,, occur at some elderly patients also high body temperature can protect against blood microagglutination.
How about this? Some days I feel BETTER than I used to at baseline pre covid. I feel stronger and smarter, and my chess rating will back this up. Chess rating will crash when I'm in a setback...and when I have these upswing days I will crush people in chess like never before. And one other piece of note...every single time I get one or two of these amazing days, they are quickly followed by a crash. I always proclaim that I'm over long covid during one of these great days, and within 2 days, I'm not great. It's really like clockwork.
A basic understanding of the literature shown M.E. does not = CFS. The former is unequivocally caused by cocksakievirus, the later is anything from undiagnosed Lyme disease, autoimmunity or multiple viral infections, namely ebv, cm and hhv6. The problem here is basic logic. The error is: 'CFS = ME because both have exhaustion as a symptom but fatigue is a symptom of nearly every disease in the textbook of medicine!!! This matters. Malaria is not dengue because both share fever is a symptom. You do not treat herpes viruses the same way you treat coxackievirus so this false equivalence is ruining research and harming patients. M.E. IS NOT CFS AND 'ME/CFS' IS NOT LONG COVID
Do try to sit in on OMF meetings when they come up. Impossible for Dr. T to get into depth on any topic. I read all the published works. ME 21 yrs. All the best.
I think we Long Haulers tend to avoid the ME/CFS label as a coping mechanism: if Long COVID is something new and different then maybe we will all get better next month, but if we've all just got ME/CFS then getting "back to normal" feels further away than ever.
Very astute observation
I’ve had cfs for 25 years, also had covid in March 2020 and got MUCH worse and haven’t recovered - basically long covid on top of cfs. It feels a lot like just a worsening of CFS but with some specific differences, like chest pains, which I never had with regular cfs.
I developed CFS after another virus, Epstein Barr, so I suppose something about my immune system makes me predisposed to these conditions from some viral infections unfortunately.
100% right. I'd much prefer to put my head in the sand and wait than to associate it with me-cfs. I wish well to these people, but it is not necessarily the same thing.
@@alexandrecouture2462 The thing is, sticking one's head in the sand never gets you anywhere. Not claiming it's the same thing, but there is a very distinct and large overlap, just as there is with Lyme. Different pathogens may lead to similar disease patterns. Ignoring these patterns means ignoring existing research etc. Starting from scratch means missing all that existing research, instead of building on it and expanding it. It's throwing the baby out with the bathwater. And shooting yourself in the foot.
@@andocobo I've had cebv...chronic epstein barr virus since 2007.....after 14 years felt better for 13 months then got covid in March 2021...17 of not feeling well like a bad cold/flu....then for a week thought I was better then after that IT HIT ME HARD.....And now it's 9 months later and still bad and not working.....If it wasnt for covid I truly believe I'd still be better.....I AM SO MAD AT THIS COVID IT PUT ME BACK IN HELL
I was diagnosed with CFS 1993 and am now bed bound. It has been nothing but hell. I've come to detest the medical community due to such horrific treatment REPEATEDLY for decades. The harder I pushed for help the more I got labeled as a psych patient. Then I developed life threatening conditions and needed to push even harder - but still nothing. I'm living with a condition that is supposed to need immediate emergency surgery. I'm supposed to be dead. I probably will be, from this, at some point. I have been to UCSF and Stanford about this, and have seen dozens of doctors, but still gotten nowhere. I'm sure many of you are thinking that something like this isn't possible - and that I MUST be a psych patient. THIS CAN AND DOES HAPPEN. HOW? Original misdiagnosis from prestigious doctor or hospital - and then everyone believes this - and you must see DOZENS of doctors before finding someone who "will go against" original diagnosis by testing further. THEN once that has finally happened AFTER YEARS and you do get the correct diagnosis, NO REFERRAL is given for the needed surgery. I was told to contact the Mayo Clinic, specifically in Minnesota because it's so rare what I have, and they are the only ones experienced enough to deal with it. THEN I go back and forth with Mayo for months but going nowhere. Decide to try and find a local surgeon. They send me to a GI specialist - I'm thinking for this condition, for him to learn more before the surgery, but NO. They just wear you down with back and forth, and this and that, and someone new, and eventually you end up where you started and it's just a big loop. Now, if I had friends or family or anyone who could help to fight against this, I'd probably do better. But it's been 30 years of being sick and everyone I know is gone. It only takes a few years to lose most people. Especially if you are really sick from something that isn't recognized.
I'm so sorry to hear this K. I have a similar story but i've only been severely ill for a few years. It sounds like you may also have CCI/AAI. I've gone through the diagnosis route and hit a dead end with neurologists laughing at my scans and diagnoses, and telling me I just need to talk to a therapist to fix this ME/CFS thing. I don't think anyone hates the medical community more than a chronically ill patient.
I was just diagnosed with long Covid syndrome and it's a mess.
But I hear your heart and pain you've suffered and wanted to share these with you;
John chapter 1, verses 1-14, and
Revelation chapter 21, verses 1-5.
Be blessed!
@@desireoverpain Thank you, RJ. I was born with Congenital Scoliosis and have EDS so CCI/AAI is likely (plus ME/CFS so there are many things possible). I'm tired of trying to get accurate diagnoses. The only reason for wanting them was for the correct treatments - but I'm too worn out for those now too - unless it would be a quick fix, like medication. Anyway, I've only shared about all/any of this for the past couple/few years but think I should stop now as mentally I'm giving up - and that doesn't help anyone. But I do appreciate you being there.
Hello K, I hear your hurt.I am a 36 yr old women who has had a lot of mental,emotional and physical traumas.I have MS and am going through long Covid currently. Some days like today I am so weak all I can do is lay in my bed listening to things…I don’t have enough energy to watch them. I saw your comment and I wanted to respond to you.
I want you to know I only have the strength to type this by the grace of God.Jesus Christ is the great physician lean on Him he won’t let you down.
John 3:16-18 1 Corinthians 15:1-4
Jesus loves you. Blessings to you.
I was lucky that my CooL AF doctor handed me my entire file before they digitised the records. He said do want you want and return it (with a wink). So I removed all the misdiagnosed psych nonsense. When I go to my latest doctor I keep the issues concise and act like I'm part of the solution. I always say 'Look I know it's not your fault that the medical establishment failed to inform you on ME/CFS..." I offer to send him quality research and he likes that. Make their job easy, Remain sane, if we don't moan or be demanding they pay more attention. However if you get a non believer, firmly threaten to report them to the medical council or disability commissioner. That makes them pull their arrogant heads in!
My friend as ME and she's nailed my situation from the onset - like you Gez she's been a tower of strength to me during this dark time in my life- Thank you so much for all the research and man hours that you put into long covid on behalf of all us long haulers 🙏 Keep up the good work and I hope that you achieve some kind of recognition for all of your efforts one day 👏👏👏👏👏
Thank you Dee! Best of luck in your recovery.
@@RUNDMC1 Thank you Gez and you too of course 🙏🎅☃️
Every video u make is hope for millions of people.Thank you
It’s a pleasure Masoud!
CFS for 2 years, 15 years ago. The similarities sparked my interest in LC, which led to my self-diagnosis of LC, since my initial disease was so very mild, it never crossed my mind! Lessons learned through CFS served me well to recover this time. May God bless all who research, all who promulgate the information, and all who suffer ❤🙏❤
What did you learn!? Are you fully recovered from LC now?
Thanks Judy!
@@RUNDMC1 God gave me another miracle of healing - and he used you to point me in the right direction. Cant thank you enough for your excellent documentaries and interviews. God bless ❤🙏❤
@@judymiller5154 What is that cure, treatment, miracle ? Thank you.
@@wildhorses6817 Wish I could tell you but not only is it complicated, its individual. Pray. Do your own research. Read books. Watch everything on this channel. Find a great doctor. Take care of mental health, stress, family and friends. Pray. Abstain from alcohol, sugar, refined over-processed food. Spend time in nature. Find people who understand, like the facebook page "Long Covid Support Group". Pray. For me, the key to my recovery was addressing histamines with a strict diet of only fresh-cooked beef and butter 2x a day for 2 weeks, (then trying only one new food a day ), multiple antihistamines and a ton of supplements. May God bless you with your own clear path to total healing ❤🙏❤
You ask all the good questions. We’re so lucky to have you in our corner Gez. I was one who was against admitting LC was related to ME/CFS, but if it helps us we need to combine forces. I do think there is this additional microclotting issue that we need to deal with as well.
I've had long covid for almost a year now with chronic Fatigue , deep muscle aches , brain fog , PEM etc .
However , the last two weeks I've noticed a change . I walk every day now for around an hour and I'm not relapsing afterwards . I started B12 injections about 6 weeks ago and wonder if these are helping . The fatigue isn't flooring me like it was either and I'm waking feeling better.
I did a bit of gentle jogging today just for two minutes each time then walking in between .
I feel I'm making step forwards but I've still got pretty significant issues with brain fog and cognition .
It's heartening to hear of others that are getting better slowly .
I really want to send all my thoughts, love and healing to anyone else dealing with long covid . Keep going xx
Thanks for the video
Very glad to hear you’re doing better Ella!
@@RUNDMC1 still following the same steps to recovery ; meditation , breath work , probiotics , movement and careful exertion , anti inflammatory diet , intermittent fasting, addressing deficiencies using supplements and pacing
@@EllaSloman how often do you have episodes of brain fog i have the same symptoms drowsiness unable to focus headache l m only three months old
Recpects..
@@yesminaozturk5338 I had very bad brain related issues after I caught covid and I couldn't talk properly and my coordination and balance were affected . I hadn't been vaccinated in January and I had a heavy viral load. I also had pneumonia and really struggled to find my breath.
I still have brain fog and can physically feel the frontal lobe part throb normally when I've been busy or im exerting myself .
It has improved though. I guess the best price of advice I can suggest is to try and put in place some of the suggestions on this thread to give yourself a really good head start to recovery.
@@EllaSloman thank your for your courtesy to reply
My Long Covid mostly disappeared a couple of weeks ago, almost instantly like something within me had reconnected some circuit. I’m not sure what happened but maybe someone else out there can explain it.
I feel pretty much back to normal after a horrible 20 months 😄
Fingers crossed for you Wendy, that’s great news!
@ Wendy Lorimer I am really pleased for you, has your GP ever done any blood tests for you ? do you know what your inflammation marker levels were compared with what they might be know
@@RUNDMC1 Thanks! It has been your information on taking the B3 etc. that has kept me going so a million thanks for that 😀
@@fjspicer1 Thanks! i haven't been near the NHS since May last year, I was totally dismissed as someone who had fantasized being ill. The best help has been from these videos. After the video about micro blood clots I started eating more garlic, that helped me massively when the Covid hit my lungs initially and seemed to help again.
That's great news. There's a sense that these conditions are like a switch stuck in the wrong position. Prof. Ron Davis has mentioned that the few ME/CFS patients who have recovered do so fully. Fingers crossed! My one recommendation is to keep pacing for a while even if you feel normal. My own sense is that returning too quickly to full speed is one of the ways these conditions persist.
so many times I've thought long covid was behind me....and I've always been wrong. But I will say...I am still and have always been on an upward trajectory, which makes me feel like there will be an end to this.
Are we there yet? Are we there yet..?
I can totally relate to that comment.
Me too! Crashes are shorter, gentler and further apart and I'm able to tolerate more and more triggers and exertion. I managed a 5k without any PEM last week! While the pathology is obviously physical, the most helpful remedy for me has been consistent meditation and breathing exercises (meditation has been scientifically demonstrated to regulate the HPA axis that is mentioned in this video).
@@samplayle1858 Sam, that is wonderful and inspiring. Congratulations on your first 5K post-covid! 😀😎
@@samplayle1858 that's pretty freaking huge!! A 5k never seemed possible to me, and long covid cements that fact :)
I’ve had CFS for 25 years, I wasn’t aware any doctors knew anything about it, certainly none of the docs I’ve ever seen have known anything about it
So sorry to hear of Dr. Tompkins’ death today. He was an important figure in the world of ME/CFS research. Grateful to have had him participate in this interview. Condolences to his family, friends and colleagues.
Yes it’s such a shock. Can’t believe I was talking to him only a few weeks ago.
CFS 12 years here. Thanks for the helpful videos
Thank you for watching!
I really appreciate your hard work and professionalism in preparing such an incredibly amazing videos
Thank you Riham!
Hiyah Gez, thanks for sticking by us, matie! Love from Belgium. 🍀⚘🍀
Thank you Sarah!
@@RUNDMC1 Still set on buying you a stiff drink and a belgian waffle? 😉, once we get to the other side of this situation. As I believe you're not that into Belgian beers..? Happy hols & warm regards Gez 🍀
Good quality & quantity sleep at the right time (nocturnal) is so essential for all our mental and Physical activities. Poor sleep can cause morning dysfunction.
It is Important (and Interesting) to investigate Autonomic Nervous System functions, mitochondrial functions as well as CardioPulmonary Functions in Long Covid persons.
Super many thanks for this conversation, for having it and sharing it!
It touches on many key elements, that even if noticed by others, are perhaps picked up singularly, rather than seen in the context of each together. Good that you discussed so many of the aspects, and put them together, also together with the metal aspect of this for the affected.
Yeah, I hope the research on these multiorgan inflammatory illnesses (< for lack of a better term) get more research funding and 'fusing'.
Having been a researcher, I could perhaps speculate that the previous highly specialised view of science, where people look at one discipline at a time, hasn't been so helpful for illnesses that work as a cluster of afflictions, affecting different parts of the body in primary, secondary, tertiary, etc, was. It's like trying to decode a network of effects, than trying to find the linear cause-effect relationships limited research foci leads people into. No criticism of medical researchers or staff here, I think it's just that, as with many evolutions of fields, it's perhaps time to add another paradigm, and a few more dimensions, to research.
--- Forgive me if I add some personal medical anecdotes :
I've had mecfs, specifically the 'multiple chemical sensitivity' part of it, since 11 years. Can hardly be indoors anymore.
I'm thankful to have had some pro bono testing by a Finnish specialist (there are *many* cases like mine in Finland, where I got this after working in a building that used to be a ceramics factory, with a history of handling heavy metals).
Since I started taking some of the nutritional supplements the doctor recommended, I crash less often. However, with time the autoimmune effects have gotten stronger. So i react to heavy chemistry and biology a bit faster, but also recover faster. Not sure that's considered an improvement.
I had the money to do a deeper blood analysis with specialists in Berlin, earlier this year, finding traces of heavy metals in me, plus lots of biomarkers indicating autoimmunity, low blood oxygenation, and leaky gut syndromes (despite eating probiotics quite heavily).
If you like, I made a google doc with my blood tests and associated explanations, plus some notes on associated medical costs.
Will happily share these (here) if you like.
I think you are correct about the reductionist Traditional Medical paradigm being incorrect for the study of Long COVID/Chronic Fatigue Syndrome/ME/Fibromyalgia/Lyme Disease. Its inability to treat these afflictions has lead to the Psychiatric diagnoses that stigmatize patients.
The Functional Medicine paradigm, which treats the Body as an interconnected ecological system of organs & microbiome affected by nutrient deficiencies, pathogens, and environmental toxins, is a much better approach. Dr. Mark Hyman discusses Functional Medicine on his UA-cam Channel, and treats patients at his UltraWellness Center.
I find the association of diseases like Long COVID with Autoimmunity interesting. Hyman often discusses how autoimmune disorders initially arise from a Leaky Gut, which allows foreign proteins or pathogens to directly enter the bloodstream, bypassing the digestive process, and cause a dysfunctional Immune System response. Similarly, a Leaky Blood Brain Barrier has been proposed by others as how these proteins or pathogens enter the Brain, causing Inflammation that results in dysfunction of the Autonomic Nervous System, a proposed cause of Long COVID.
If this is the case, any treatment of Long COVID and similar diseases must restore the integrity of the Blood Brain Barrier and Gut to be effective.
THANK YOU THANK YOU THANK YOU - YOU ARE SO INCREDIBLY AMAZING IN JUST SO MANY DIFFERENT WAYS! I've been following you since almost the beginning and am so incredibly impressed. I was really wondering what direction you'd end up taking. When I first learned about Long Covid I was shocked by how similar the symptoms were, and I wrote about it in my CFS and EDS groups, and was so surprised that some people were angry about it. I was hopeful for the first time in years but they didn't see it this way. The bottom line is that Long Covid IS different and unique BUT that it also is, and will be, in the same basket as ME/CFS, Chronic Lyme, and EDS - and for good reason - because these all create the same medial conditions. I can understand people not wanting this, for many reasons, but we need to work together to get the help we need. We will be fighting against something that's been deeply ingrained for many decades. I apologize for my previous post and for my negativity - I know it's not helpful - and deep down I just want things to change, and for everyone to get the help they need... but I'm just so angry and damaged that I couldn't write what I am now without getting that out first. AGAIN, THANK YOU, THE THINGS YOU ARE COVERING ARE SPOT ON, YOU COULDN'T BE DOING A BETTER JOB IF YOU TRIED. YOUR UNDERSTANDING AND COVERAGE IS JUST AMAZING. THANK YOU TO EVERYONE. WE MUST JOIN AND FIGHT TOGETHER FOR EVERYONE. NO ONE GETS LEFT BEHIND.
Thank you K - best of luck with your recovery!
I remember the gaslighting towards those with yuppie flu back in the 80s in the UK. 'Long' after effects from 'viruses' (assuming viruses are the issue here, the science on that isn't even clear) have been happening, ignored or denied for decades. If you have long covid you MUST learn from the past. The fact that this video started with warnings not to get the pitchforks out by comparing to past diseases was astounding. And a sad reflection on today's society.
Unfortunately there are way too many pitchforks around this subject - but it is a reflection of the way sufferers have been treated for so long (amongst other reasons)
Thank you for the video I’ve had CFS for decades stemming from the adult chicken pox. It’s been miserable and a struggle. At least long Covid is shedding light on the condition and therapies
I had Chicken Pox at the same time I had Covid-19.
67 year old male who had Chicken Pox at 6 years old.
@@randolphwilliams2365 sorry to
hear that. So you had the chicken pox twice?
Me too. Onset at age 20. Use CVS as an umbrella term but more accurate would be to call it post varicella rather than CFS which is a highly heterogeneous group. Varicella is a well known cause of disability, especially in adults. This is a post viral syndrome but few physician's have understanding of that.
I have had ME for 23 years, mainly severe last 16 years, bedridden last 9 years. This illness has been so badly stigmatised and wrongly framed for decades depriving the illness of significant funding for biomedical research and in turn cruelly leaving patients with no hope that at least considerable efforts were going in to finding effective biomedical treatments. As Ron Tompkins says this is also why there is little to offer this new cohort of long covid patients that seem to share similarities with ME.
So sorry to hear of your story Annie :(
@@RUNDMC1 many thanks for your kind words.
Excellent video, ME sufferer when aged 26 yrs, now 64 yrs old.Took 7 years to get back to about 95 to 98 % right, still need to keep eye on energy level.
My recovery was concentrating on getting my stomach bacterial right , which foods suited my system. Plus I also had some colour therapy.
You know if you have ME , one of the main feelings is your life force energy is draining from your body plus all the other variable symptoms.
Keep up good work, when I heard of long covid my first thought was of the connection with ME .
Let's hope there are benefits both ways.
Lance hi! Was your recovery from ME strictly focused about addressing the GUT and pacing? Glad you almost recovered! 😊 I am 24 years old, 5 months into it and it’s a living nightmare. Doing my best to gain the knowledge to improve. Thanks for your kind attention!
@@niccolowrld hi Niccolo, thanks for your comments mate. Main concentration was getting gut right , you know when your stomach feels right, cut out fats and dairy and some wheat. Lost 2 and half stone.
Once I felt semi recovered I could start eating my previous usual foods.
Definately no exercise.
Listening to your body and working out best approach.
Colour therapy helped too.
All the very best in your recovery Niccolo,
The plus side is you know that you have alot of determination which will help with your life going forward 👍
Kind regards
Lance
@@lancemacdonald1819 Thank you so much for your kind answer and I am very glad you are doing better and have a second chance at life.
Best regards,
Niccolo.
@@niccolowrld
Hi Niccolo,
Just wondered how you are, any progress ?.
I forgot I also cut out sugar, still don't have much .
Kind regards
Lance
New subscriber w/ME/CFS & Long Covid. Thank you for bringing this caliber of expert to address ME/CFS in the Long Covid conversation. It's important for so many reasons. I am outraged that the very institutions responsible for the deliberate denial, stigmatization and underfunding of research of "Chronic Fatigue Syndrome" are now in charge of this disease. The whole interview needs to be heard. Yet I am drawn to comment on his closing chapters where he artfully demonstrates a level of self-restraint I can only respect. He so briefly touches upon the stigmatization of CFS. Not only of patients but of the experts who dedicated themselves to it in the face of discredit and institutional denialism. Those now HIGHLY CREDIBLE EXPERTS, as they should be so recognized. Are being sidelined and quietly dismissed as these same agencies pretend to proceed in our best interests. RECOVER it seems instead is funding up-and-coming "new groundbreaking research" with new "experts" who have no experience at all with the disease. Why are they trying to squeeze out the experts? Is it simple institutional embarassment and coverups? Profit motivations? Who benefits from this stragey and why? I imagine it is risky for anyone in the medical field to speak out against those institutions. The media isn't covering the issue. The American public must not allow the CDC and NIH to have a "do-over" or "save face" by splitting this into "two different diseases" while covering up mistakes of the past and ignoring the progress that would save lives and livlihoods now.
Interesting on his response to BC007 and how they weren't keen to team up in the research. I'd love it if you could get an interview with those guys. Great video though Gez! You definitely help to keep us going.
What is BC007, please??
Leave it with me Sami!
This is BC007 berlincures.de/pipeline/
@@RUNDMC1 I asked about this on Twitter and Berlin Cures responded. They would very much like to get in contact with the OMF. Could you pass this on to them, Gez? Thank you!
I appreciate what you’ve been doing for us, Long-Haulers. I’ve been suffering from Long-Covid for 11 months. Unfortunately, I couldn’t go back to work. I have developed a routine for making my days acceptable, among other things nettle tea in the morning, eating meals with low histamine and so. Nevertheless, that would be nice to see your daily routine.
I wanted to start a channel about what makes my days better. Nevertheless, I’m still pretty weak to do it. Besides, I’m not a native English speaker.
Hey Viktor, i might talk about it in a future film. Unfortunately I’ve had to cut out all of the stuff I used to like (coffee, tea, exercise etc!)
@@RUNDMC1 compounded ketotifen has improved symptoms for many of us with Mast Cell Activation Disorder.
Thanks for this video Gez. I think it’s so important that people with long covid don’t further stigmatise the ME/cfs community. I got long covid in Feb 2020 and was very happy to learn from people with years of experience with me/cfs and if you search you will find so many positive cfs recovery stories and useful bits of advice. I also was referred to a cfs doctor who’s spent his life treating fatigue, who is so understanding, much more so than the long covid clinic I initially went to, he’s also been able to prescribe things the long covid community know less about. At the end of the day the label is just a label, what’s important is moving forward with whatever symptoms you have. Many people with cfs fully recover and some do so quite quickly within a year or two, the main difference in my eyes is that they might have started with a different virus or infection.
How are u now?
@@shaft657 slowly improving. Feels very slow but I can't complain as moving in the right direction.
Great to hear that... happy for you... hope soon there will be sucess story posted here... keep going in right direction
Thank you again Gez, been finding ME/CFS UA-cam stuff most useful, pacing and diet etc. Looks like you’re also keeping an eye on heart rate via a wrist watch too… the exercise intolerance and post exertional malaise is a right bugger if mine gets too high for too long. It’s getting on 20 months of this tightrope walking ain’t it.
That’s exactly it for me too!
Sometimes I feel like I am not really in better condition than 11 months ago but recently, I received comments of people that I look in better health and almost normal. Last week I had 4 good days in a row, followed by 2 bad ones where I needed to sleep a lot. It is a bit more manageable, with good days and my bad days aren't as bad as they were. IVM definitely cleared 2 of my symptoms: GI aches and being near nausea in the morning. It only helped temporarily with my energy level, but it's better than nothing! No miracle in sight, but with times, it will more than likely improve.
I know that feeling of trying to work out if you’re any better or not!
How are u today?
My sense: Body systems get down regulated after a shock/trauma that drains resources, then gets stuck there due to varying reasons, but mostly due to a body system that was already compensating; therefore not able to fully recover (aka the cliche "Type A" personality that was already burning the candle at both ends, paired with incomplete nutrition, before and after the initial trigger, and lack of social supports). Of course the same result can happen with different processes/causes.
Im grateful for anyone researching this and providing PROOF that things are awry in the body; instead of it being a psychiatric problem or worse yet, just some sort of character flaw.
Physics Girl's long covid struggle has been informative to watch. Her video about the Stellate Ganglen procedure, essentially numbing nerves in the neck (and interrupting the "stuck-on" trauma response) makes sense to me why it could help.
Great interview, thank you.
Thank you Gez, as always! I heard you mention in an interview that you were on anti-coagulants and had been feeling better, are you planning on a video to cover anti-coagulant regimes without the use of apheresis? I am interested to hear the results of Dr. Jaco's research and am consulting my cardiologist about going on them myself.
Leave it with me!
@@RUNDMC1 Shaking your hand!
@@RUNDMC1 I hope you don't mind me asking, I am also from the UK and wondering who you have found that is willing to treat you with anticoagulants? I am more than happy to go private as I have quite frankly given up on the NHS. :)
Thanks again, Gez. I know very little about ME/CFS but wasn't it said that sufferers are predominately women? It seems to me that there's a stigma attached to any disease/condition suffered primarily by women overall. My theory is if men were primarily affected, much more money for research would be forthcoming. Apologies for my jaded opinion. :)
Hi Erika - we did talk about that, later on in the video! And I agree :)
@@RUNDMC1 Oh sorry, I missed that part. Well now you see how important you are! :)
ME gets triggered by meningitis, glandular fever, other serious infections. At what point are we going to accept that many of us have just developed ME.
M.E. is caused by coxackievirus. CFS is defined as having no known etiology. The cfs group hijacked the M.E. dx in the late 80s to try and legitimize their condition. Let me say it plainly: M.E. does not equal CVS. This is flawed logic and is like saying malaria equals dengue because both share the symptom of fever. The false equivalence has ruined M.E. research.
I agree, a lot of Covid long haulers may very well have ME/CFS. But a large section also doesn’t, for example people who are mainly plagued by blood clots and whose weird symptoms go away once they deal with the blood clots.
M.E. is caused by coxackievirus, CFS is by definition unknown etiology and long Covid is well, caused by Covid. It is one of many post viral syndroms. Therefore m.e. doe not equal CFS and long Covid is not cfs or m.e. malaria is not dengue just because of similar symptoms. Etiology. DEFJNES disease.
I have been dealing with long covid for months and months as a young man. What seems to have helped is doing "all the right things". The frustrating thing is the benefit wasn't immediate. Unlike before covid, where if I ate right and got sunlight and the like I'd immediately feel better, I would do healthy habits and it would take weeks to really see results. Your body needs to heal, and because it's so disorganized it has a hard time healing. As of now I'm still not 100%, for example, my HPA axis is still clearly wonky. However, I'm going for runs, I'm lifting weights, and I'm not crashing just from doing daily activities like I was. A huge one for me was walking. I introduced it really slowly, and any time I felt like I was pushing it too far, I'd stop before I crashed. Mild walks went on for months, until I finally felt ready to try going for a light jog. I was so deconditioned that what used to be a warmup before covid felt like a full workout, but I didn't crash and slowly I got my cardiovascular fitness back on track. The important thing is to not "overtrain", even when it comes to non-athletic activities. Just as when an athlete exercises more than their body can recover and they slowly get worse, the same thing seems to happen with long covid. Our energy and tissue recovery systems are greatly weakened, and so you don't want to risk further damage by exceeding them.
I had covid-19 and later diagnosis with fibramyalgia, ME/CFS and still ongoing 18 months later. Thank you for taking the time to educate people.
Best of luck with your recovery
Me2...how is your dr treating it?
Hi there - I've been diagnosed with having coeliac disease due to having long covid . What a pickle we're all in .
@@deethompson3592 how do you treat that,diet?
@@stormshadow9026 Hi there - You have to eliminate anything that contains Barley Rice Oats or wheat from your life , it can be found in lipsticks sauces drinks and all kinds of foods. Alot of the symptoms are just like ME/CFS too. I no longer recognise my life like most of us long haulers. I hope things begin to improve for you Storm - it looks like we both have life long conditions now from Covid 19 doesn't it 💔🙄
I wish this guy elaborated more on his answers. It kinda left me wanting him to talk more and Gez was the one talking with more enthusiasm and energy. I dont blame him though when the ME community has been disappointed for decades. Makes me wonder..
Dr. Tompkins is quite new to the ME/CFS community research world. Dr. Nancy Klimas is one researcher who can speak on it after decades of research.
Herzlichen Dank für Ihr Engagement!
Thank you for this informative interview, time watching your channel is always time well spent.
Abstinence from histamine triggering foods, sugars, processed carbs, junk foods, and alcohol consumption has been a fast ticket back to a level of "normalcy". I still have long haulers, but the symptoms are background noise compared to the debilitating symptoms I had been dealing with prior to adapting this lifestyle. Daily I take supplements for mitochondria support, and other supplements.
Great to hear you’re coping better!
Gez, I would really like to hear more about the "corticoid inversion" Dr. Thompkins mentioned.
Like you, I wake up feeling trashed. I come to life around lunch time, and feel my best when I should be going to bed.
Not easy to find more about this just doing web searches.
Huge respect to you for all you've done and all you are doing. You deserve an Honorary Knighthood!
Thank you Pauline! If I find more info on the HPA axis effects I’ll let you know!
It’s your cortisol cycle…normally cortisol is at its highest in the early morning to wake you up. It should be at its lowest at a reasonable bedtime. The best way to find this out is through a 24hr saliva cortisol test where you’re given 4 sterile tubes that you spit into at specific times of the day. You freeze the tubes, mail them back for analysis, and they send you a report where they chart your cortisol levels for you. Overall, cortisol levels are on the low side in both LC & ME. The pattern might show, for example, that your cortisol levels are highest when you should be sleeping and lowest mid morning.
@@JulienArbor What's the best way to normalize cortisol cycles?
@@paulineroberts1815 Hi Pauline! First you need to find out what your cortisol level is and its pattern. It takes time and a lot of work to address Adrenal Insufficiency (aka Adrenal Fatigue or Adrenal Exhaustion) and it’s important to learn whatever you can about it. Also make certain that your thyroid is working properly since there’s a close relationship between the adrenal and thyroid glands.
My cortisol was low (not so low that I had Addison’s Disease, but I had severe Adrenal Fatigue/Adrenal Exhaustion) and my pattern was pretty much opposite of what it should be. I had to set up a schedule for myself and stick to it, which was really hard for me because I had always been a night owl. No eating after 7p, in bed by 9p, take up meditation, stop all stimulants (very hard to quit caffeine), avoid all unnecessary drama & stress, make certain that you don’t have any nutritional deficiencies and take supplements to maintain, eat whole foods, take adaptogens (herbs that help you deal with stress & support the adrenal glands), make sure to incorporate a lot of quiet time and time for the things you enjoy into your life, bombard your senses with pleasurable things…listening to music, smells you like, soft, comfortable clothing, relaxing baths with epsom salts, massages, etc. In some ways I was lucky to have it when I did because this was pre-internet (yes, I’m old 😉) so I didn’t have the temptation of social media, but if I did I would definitely stay away from it. I also took up taiji and other Daoist arts…gentle, soothing exercises rather than anything that too taxing.
I discovered that there’s a window of time right around my bedtime that I get really sleepy, but previously I had been pushing myself to stay awake past that window and would then get a second wind and be up until the wee hours of the morning. If I go to sleep during that window I feel much more rested and wake up pretty early in the morning. The same number of hours of sleep isn’t the same if it’s done later at night until later in the morning or into the afternoon. You also don’t want to eat anything within a few hours of sleeping because even though you may be able to fall asleep, your body is still working hard to digest your food so the quality of your sleep isn’t as good.
I also worked closely with my doctor who’s a traditionally trained internist, but also has extensive additional training in functional medicine. He prescribed a low dose of hydrocortisone which I took for a while. It gives your adrenal glands a bit of a break so they don’t have to work so hard and can heal. At that time there were very few doctors who were willing to prescribe hydrocortisone, and I don’t know how it is today. You used to be able to take a glandular OTC called Isocort, which was similar (but not as potent) to taking hydrocortisone, but they no longer make Isocort. I believe a few supplement manufacturers distribute whole adrenal glandulars or combinations with adaptogens, but I don’t know of brand names. Ideally you want sheep adrenals followed by bovine. With hydrocortisone I just felt a bump up in energy…nothing very dramatic. But it was enough to help me with the crippling fatigue and exhaustion, and allowed me to do more than I had been. The trick here is not to overdo it, which is incredibly easy to do. You get excited that you feel better and you want to make up for all the things you’ve been missing out on or had to put off. That’s the trap you have to avoid or you’ll be back to square one if not even worse.
I’m losing steam myself, but feel free to ask me any questions you have and I’ll try to answer you. I remember first learning about Adrenal Fatigue/Adrenal Exhaustion and thinking that there were some things I just wouldn’t be able to do. Ha! This illness definitely shows you who’s boss and you can either do everything required to heal it or keep getting worse. It’s very humbling.
What are the h1 and h2 blockers? How do you go about suggesting meds for LC to long covid clinic? They dont seem to know anything its more of a glorified helpline at this point. 11 months in now
i feel brain damaged. Thanks for helping me feel real ish.
He’s referring to 2 different types of antihistamines - one blocks the H1 receptor, the other the H2 receptor. You can generally buy H1 blockers over the counter, like Telfast, Zyrtec etc., H2 blockers usually require a prescription. You can also get higher dose H1 blockers via prescription.
Thank you SO MUCH for these videos. They are gems. Real freaking gems.
Thank you Andreas!
I’m 34 and dying in a hospital bed.
I was ultra fit and active last year.
Connective tissue failure, NMO, Lyme Disease positive at Mayo, and Craniocervical Instability…looking for something to stop atrophy and weakening of tissue. Will need repair of neck and more.
This is awful. I’m so sorry Anson
I was just diagnosed with long Covid syndrome. While it feels like slow death, your situation seems like a much tougher issue but you sound strong.
Check out the book of John, chapter 1, verses 1-14.
And read Revelation 21, verses 1-5.
Steroids help with muscle wasting and certain steroids help connective tissue.
Anson, how are u today?
Aha now I understand why Cognitive Behaviour Therapy is recommended to help with CFS (on the NHS website) and why I found it completely useless.
The therapist was like ‘oh, you have nothing going on in your life outside of work’ and then signed me up to various groups. Whilst I repeatedly explained that the only energy I had I had to use for work and holding down a job.
I have had long-COVID for 22 months; I have lived with ME/CFS for 40 years (since age 17). They are not the same. Similar, yes. But I describe long-COVID to my family and friends as ME/CFS with fangs. I can't explain the difference in scientific terms, but my body certainly feels the difference. Amidst the superimposed terror of the COVID symptoms, the familiarity of the ME-type symptoms have been my glimmer of hope that someday maybe the COVID fangs will loosen their grip and just melt back into "normal" postviral ME/CFS where I can at least fake having a life. Over the last several weeks, the most vicious of my long-COVID symptoms seem to be receding, and my hope for at least a partial recovery grows a little brighter. Maybe by this time next year I will be back to the usual weak and wobbly but functional me!😁 For now, I am grateful for any improvement, no matter how minuscule. And I am especially grateful for your wonderful, hopeful, factual, balanced research and interviews and the discussion and conversation and collaboration that they foster. Thank you, thank you, thank you!
Hi Nancy, as someone who’d previously had PVFS for 12 months (technically ME?) - your description of ME with fangs is bang on!
I’m in the same situation, had CFS for 26 years and now also had long covid since March 2020.
For me long-covid is very much like a worsening of CFS, good days now are more like what bad days used to be. There are a few new symptoms - chronic chest pain, chronic cough - but for the most part it feels like a general worsening of CFS for me.
My capacity for any kind of activity has probably dropped around 70% below what it was with just CFS, which was probably around 30% of normal.
I personally think the mechanism is either the same or very similar in both conditions.
Nancy Johnson your story is my story. Also had ME for 40 years and LC for 22 months. I,liked what you said that it is like ME with claws. You are so right. I am really battling. Luckily my husband has taken over the shopping and other things that I was able to do with ME but can't do anymore. I was 32 when I got sick and am now 72. Take care.
@@andocobo I believe you’re right about the same or a very similar mechanism causing both LC & ME. I’ve had ME for 30+ years and I believe the trigger for me wasn’t a virus, but instead a systemic fungal infection that set in after far too many antibiotics beginning as a kid through my teenage years and into my early twenties for chronic tonsillitis, then acne, and then chronic strep. My microbiome was destroyed when I was a child!
The microbiome is being called a biomarker in both LC & ME.
Thankyou for this ! Very interesting ! 20 years with me/cfs after infection. I was super fit and loving life! I suffered hay fever terribly when I was younger so much I had to have injections and was bed-bound, the mast cells make sense, it was on the cards for me. I recently got covid , I am unvaccinated due to being scarred if a relapse ha! How stupid I am! I’ve never been so I’ll. I am currently waiting for a steroid injection that my consultant said will help me as he definitely said ME has an autoimmunity. Everything that’s been said here is spot on ! Thankyou xx
Best of luck to you in your recovery Diane
Awesome interview, thank you very much Gez!
Thank you!
Gez, I hope you took note of his comment that testosterone is anti-autoimmune, which could (as I have said in the past) be an explanation for why Long COVID affects women more and why my cancer treatment, involving suppressing testosterone, was why Long COVID hit me so hard.
Very interesting Mike!
I must admit, I always find it a bit comical, albeit sad, when I hear physicians and scientists from places like Harvard talking about concepts that we have been discussing and treating (and historically being ridiculed for) in functional, integrative, and naturopathic medicine for 30-40 years as if they are "new" concepts. Don't get me wrong, I am glad they are, and they are well intentioned, but it is ironic at best. Gez, I do think, at least in the States, they have looked back at CFS/ME research and treatment history as we approach Long-Haul. However, the research of CFS/ME has not yielded substantial or complete answers, nor have treatment approaches been substantially effective, and certainly far from curative. Therefore, I look at this the other way around. I don't have great faith that the former work into CFS/ME will solve or significantly inform Long-Haul therapeutics, but that the new aggressive work into Long-Haul will ultimately inform our understanding and treatment of CFS/ME. That is the hope anyway!
I completely agree David!
I and others will remember that all the credit goes to you and people like you. You are very important. I only hope that good people find you since the majority are the regular doctors.
Having had ME for years I have always thought long covid was me. The only difference being that people with long covid Knew exactly what virus caused their ME/illness. I do believe that if they are same or different each can help each other. There must be a connection there are so many identical or at least very similar symptoms. I feel people as a rule have a better understanding of what long covid is compared to ME and over the past couple of years have said when trying to explain my condition it’s almost identical to long covid. Until recently I had never heard of MCAS and having read lots about it I do wonder if that’s partly to blame for many of my symptoms. I have also discovered there is a gp who tried to set up a clinic for ME/Long Covid but the Scottish government didn’t allow her to proceed. There are no such clinics in Scotland but she has set up a private clinic but then writes to your gp with suggested tests and medication based on you symptoms. She was forced to set up this clinic privately due to the lack of government support. I am seriously thinking of going to see her. If it gives me a little of my life back I am absolutely up for trying it. I have heard you talk about the same thing and it has helped you. Claire xx
Why should not long covid be ME/CFS if we consider that what triggered the sickness for many ME patient has been some kind of flue or similar. We got covid that triggered ME. Can’t see the difference really. As usual great videos Gez.
Thanks Jan. There may be some differences in trigger (viral persistence etc) but certainly many similarities in outcome.
At 33 I was young healthy and full of life until I came down with a virus. Within 3 months I had to quit my job, my life pretty much ended or at least the life I knew. . Fast forward 32 yrs later I function at about 30% unless in a flare then my function level drops to pretty much zero. I have a classic case of me/cfs. I have been mistreated, made to feel quilty by the medical community. I could write a book on the stupid things to say to a me/cfs patient. My life has been stolen.. I would love to be part of a study. Not so much for myself because I feel it's to late to ever recover but to help others. One thing I will do for the rest of my life is not be bully into doing graded excise. It's a killer! Pace pace pace like your life depends on it because it does!
I’ve read about MECFS getting better w DNRS . Am damned and determined to utilize DNRS/Gupta, along with diet and lifestyle changes, to get better as well. Believe COVID causes brain damage putting you in constant state of fight or flight and the brain needs new pathways/connections to get out of it.
Thanks, as always Gez, for another great interview. I'm 22 months in and just started HBOT. We'll see how it goes.
Thanks Nicole - hope it works for you!
@@RUNDMC1 I'm cautiously optimistic but after 9 sessions, I've gone from average daily 02 levels of around 88 up to 99-100%. So it is doing something. I'm just not sure what yet.
You forgot the well established infections, usually EBV, CMV AND HHV6. These may be secondary but are certainly driving the continuing pathology as proven by Lerner, Montoya and Kogelnik
Dr. Bruce Patterson has videos on what happens in long Covid at the cellular level.
Thank you for all that you do ♥️
Incredible resource -- thank you.
IMHO CFS/ME and long covid are the same condition but with different names due to the different 'final straw' or last known stressor to break the camel's back. The thing making most sense to me from what I've read is that chronic fatigue symptoms can be caused by ANY kind of stressor which depletes the body's reserves of glutathione, it could be a car crash, a bereavement, a serious illness, mercury toxicity, mold, tick bite, gut dysbiosis, EBV virus or covid virus or any combination. Anything depleting glutathione leads to the mitochondria not being able to make sufficient ATP - hence we never have a continuous supply of energy. Hence when we rest, the body makes a bit of ATP, but once we've used it up, we have to wait until it makes more. These thoughts come mainly from Dr Rik Van Konynenberg and Dr Sarah Myhill. Mae's et al did a study and put CFS/ME patients on a Paleo/leaky gut diet with a few supplements. Something like 80% recovered in 14 months. The study attributed the success to the LG diet ... The only thing is, they also gave n-acetyl cysteine and alpha lipoic acid (think it was ALA) which are known to support glutathione production so recovery could have been due to restoring glutathione levels 🤔. Konynenberg says that as well as restoring glutathione you still have to deal with whatever is depleting it, e.g. mold, mercury or reactivated virus. But the good news is, some people have success with natural antivirals. Oh yes, some people recover by fixing the gut but guess what, a healthy microbiome supports glutathione production.. If nothing else, this area is worth research. I daren't say it will work for everyone but speaking for myself I'll try just about anything ... but not a fecal transplant 💉 😳. ME/CFSer, 19 years and counting.
The speaker spoke of small fiber neuropathy and migraine medicine. What was that medication?
I feel like I should take screenshots of my comments to you on your first videos of LongCovid about ME/CFS..
Looks like the message has finally been received and acknowledged.
I hope we can continue forward with the biomedical approach and leave stupid pseudoscientific bs like brain retraining behind us now.
If the person with a MD or PHD cannot provide an objective measure or a biomarker of some kind of what they are speaking about in regards to LongCovid or ME/CFS, they are not worth interviewing.
Well there aren’t really any widely accepted biomarkers, isn’t that part of the problem?
@@RUNDMC1 It's a huge part of the problem. I want a diagnostic test first and foremost. I think fundraising, and advocacy should be concentrating on that. Dr. Ron Davis potentially has that in the Nanoneedle with electrical impedence, but we need. to get it funded to find out.
However, there is no diagnostic test for ALS either. But it is still researched, funded, and accepted as an illness.
Ultimately, ME/CFS is held outside the normal rules of play in terms of how we judge it. That is also the problem.
I would love to see you interview Dr. Ron Davis and Dr. Rahim Esfandyarpour (UC Irvine) about the Nanoneedle and its potential.
med.stanford.edu/news/all-news/2019/04/biomarker-for-chronic-fatigue-syndrome-identified.html
Gez: what's your opinion on this?
M.E Specialist: There hasn't much been done in ME...
He knows more about the subject than I do!
Thank you for all your videos!!
Please tell me what is ME?? Anyone. Thanks in advance! I heard the CDC (USA) will me doing research on long covid & chronic fatigue, together. Let’s hope they can help figure all this out. Thanks you for all your help and all you have done on this topic. I hope your feeling well.✨
CFS and ME are the same thing -just different names. Often the condition is referred to as ME/CFS. In UK, ME is the preferred name.
www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/
ME stands for myalgic encephalomyelitis.
Thank you so very much for your work!
Thanks for watching!
... as a German Biologist - this is about conditionings of our Life Styles - where we are flooded with stuff we have no idea what long term effects they have. Already in the 1970´s we had a fast increasing number of allergies, Neuro dermitis, neurological consequnces of immune reactions... and then the sudden impact of new viruses and allergies - that will strike millions of persons in a precondition on the way to allergies, auto immune reactions and reduction of resilience to regenerate from exposure and stress. It is our modern Life style causing this - as long as we are living in a way like drug addicts consuming the Dope of modern Society - we enhance our self extinction...
It's now two years, and if it weren't for the periodic stretches of feeling great, and feeling back to normal, I'd throw in the towel. Yesterday my physician and I agreed to my enrolling in a long hauler's program with a university medical center. Just when I think that I have it figured out, and my health seems back to normal, my energy levels are where they should be, something will upset the apple cart (like a cup of herbal tea) and then I experience a major reaction.
So sorry to hear that - I relapsed again recently and it really is bloody awful
@@RUNDMC1 I greatly appreciate your honest and your candor. Your YT Channel has been one of answeres and solutions. Thank. Yes! It seems defeating at times, but if we stick together we can get to the other side of this. I hope that you are saving your notes for the great novel that you'll write about your experience.
How are u today?
I'm yet to hear of anyone studying the effects of ME/CFS on people who have been affected for longer than 20 years. I'm a 40 year veteran and in that time, suffered many other symptoms that may, or may not be, related to my dx. Obviously ageing plays a part, but I'm sure there's other, unrecognised clues.
I’ve not heard of that either 🤔
People that are diagnosed with ADHD are more than likely to suffer from constant fatigue and tiredness. The literature estimates that this effects 60-70% of these people. I can't find any models related to the cause of this for people with ADHD. Is it related to any of the models of ME/CFS?
Gez, please do an update video with Asad!
It’s coming!
R.I.P Dr. Ronald G. Tompkins. ❤
Dr. Ronald G. Tompkins, Chief Medical Officer of OMF passed away, January 18 2022.
Very sad news
@@RUNDMC1 Yes, it's so sad. Suddenly he was gone. Mr. Tompkins was a very passionate and empathetic person. I think you got the very last interview with him.
He keeps saying corticoïdes although I believe he means corticosteroids. What’s actually happening is overall the cortisol levels are low and the 24hr pattern is often off track.
Anything that impacts the adrenal glands is also going to impact the thyroid gland.
Anyone on the Dr Patterson plan? I am trying to decide if it is worth it to go down that very expensive road. Lol
Me, too. I completed the 14-panel cytokine test with a high score on the long-hauler's index. I trying to at least find some people who have been through this protocol to see what to expect. That would be just anecdotal, but better than nothing. I hear that 1600+ people have been treated but no published statistics about the results. If this works so well, why is there nothing in the literature about it? It would be "standard of care" by now. Not expecting 100% success, but I would like to know the odds before diving in. Does anyone know of someone who has been treated by Dr Patterson's protocol who is willing to talk about it?
@@bradsalz4084 I too received a high score and met with Dr Osgood. Next step is to pay out of pocket for a primary care Dr that can prescribe me miravorioc. They say their database is 12k patients and they are currently treating 2k. We know that most long haulers are getting better on their own so is their treatment really working? Also I read a lot about long haulers scared of permenant long term effects...we don't know but my opinion is that we will fully recover with no long term issues. Stay positive everyone.
@@kfamilyvideos1 Exactly! You would expect people to improve over time even in the absence of treatment. What is required is a formal study where participants with similar cytokine scores and presentation of symptoms are assorted into two groups, one which gets the protocol and the other which gets "standard of care" which right now is not much. Then we can see whether treatment is worth the expense. On the other hand I cannot believe that they are doing harm, for if they did, state medical boards would be shutting them down as quackery. Have you asked for statistics on the 12K people that they say they have treated? Or at least names from that list of people willing to talk to us?
@@bradsalz4084 no I haven't asked.... My body tends to get worse when taking statins, niacin, fluvoximne, etc. They want to give me fenofibrate in place of statins and miravorioc. Given my history, I have a feeling I wont do well with those drugs which makes me consider that it may all be snake oil.
I appreciate gez for allowing us to have conversations like this on his video thread.
@@kfamilyvideos1 Yes, it is great that we can have this dialog here, although I wish there was a more centralized place to hold these discussions about long-COVID, so we don't wait for video post to spark conversation. Speaking of Miravoric, another CCR5 antagonist that Dr Patterson was promoting was Leronlimab. It seems to have made it to at least a phase II trial and then disappeared from discussions without any explanation I could find. I don't know if it is all snake oil but we certainly need more visibility. Are there other long-COVID or ME/CFS researchers citing Dr Patterson's reseach? If not, why would it be ignored for so long? Are other long-COVID clinics using his test panel or copying his therapy? If not, why not? These are reasonable questions that need answers.
Have you heard of somebody who did not have covid, having long covid afterwards? Sound strange, but i didn’t have symptoms, but my IgG test appeared reactive, meaning i had covid. Since 6 months i’ve been through a rain of different symptoms, such as 3 episodes of vertigo, Neuropathy on cervical, with terrible spasmodic pain, fatigue, and lots more. Seen lots of dr, seeing a psychologist now, seeking for a fibromyalgia diagnosis. As I feel rather better, it begins the storm again. I’ve been vaccinatex with coronavac , 3 doses, last in october. I blame on vaccines. I’m 66, hipertense, but healthy before this. Tired.
Yes - asymptomatic cases can lead to long covid, and vaccination can do too in rare cases.
@@RUNDMC1 thanks Gez! I thought i was a rare case. Drs here in Chile are rather suspicious on long covid.. i made my own research and finally find a dr who supported me and we are looking for answers. In my case I am finding that every time I feel in highly emotional situaton, my body collapses with different symptoms abd i hsve to rest afterwards to become myself again. It is diffcult to the family to understand, the think thst is “my age”, “ my sensibility” or whatever and that leads me trying to not telling anything of what happens to me.
It is a lonely issue. I am an artist and that has supported me better than anything. Have you heard of Dr,Loh, in USA, and her investigations on vit C and melatonin? Follow het on Facebook. Thanks Gez for your answer. I’be here. Be safe.🌺
I am about 22 months in.. I have gotten much better with antihistamine diet and lots of supplements. I still have crashes once every few months and my immune system is not good.
What is your protocol for supplementation? Linda
It’s still the same as discussed in this film:
ua-cam.com/video/sICD0Kn6pR4/v-deo.html
@@RUNDMC1 thank you
Has anyone tried IV fluids for LC? Listening to Dr Been talk to Dr. Berkowitz, he brought up IV fluids for POTS, not a cure but a temporary reprieve. I am curious if anyone here has tried it? Not sure how to get it prescribed in Canada, I have a doctor's appointment next week and will bring it up. Seeing as how better blood flow = feeling better with the supplements I have tried.
Not sure about IV fluids but IV glutathione has had good anecdotal reports
I just can’t sleep at night. And I am so tried in the day.
Try melatonin if you can get hold of some
Thanks Gez! Great vid!
Thanks Laura!
Long COVId is not the problem. MEcfs is not the problem. The centralized god complex power of the medical system is the problem.
The problem is definitely psychological.
Doctors are too weak psychologically, to admit that they haven't got a clue.
Inventing psychological weaknesses in the patients eliminates their need for them to confront their own.
@@robinhood4640 could not be more true.
@@christiangranqvist2350 Addressing the psychological weaknesses of patients has very controversial results.
The eventual psychological weaknesses of doctors, which are likely to be playing a huge role in the suffering of many patients, needs to be addressed just as openly.
They need to get over themselves, is the bottom line.
@@robinhood4640 that’s definitely part of the issue - I’ve had doctors do this to me dozens of times, literally just make shit up to save face. It’s appalling behaviour, but very common.
@@andocobo and they always get paid.
What's the correlation between bulging veins and Long Covid?
I would also like to know. My best guess is your body trying to get as much healing stuff to the parts that got hurt because of covid so healing could take place. 💐
Poor circulation due to sticky blood
@@RUNDMC1 how to fix that?
@@anna-marieeasmus7529 yeah I think it's in survival mode, trying its best to bring nutrients and oxygen to the organs, but what I don't get is why my great saphenous veins are still bulging 17 months into it. It seems something is still causing it to be dilated (?) and I wonder if the immune system has something to do with it? Viral persistent? Mast cells? Sticky blood/micro clottings like OP said or is it something else?
Probably something of everything. I am still bedbound after 20 months, so chronic or recurring infections definetaly for me. I had bloodclots last year and were on bloodthinners. I still had bulging veins. I had negative bloodclot test in September but bulging veins and other symptoms still persistent. 💐
Good one!
Long covid is a new post viral condition, but a certain percentage of patients will develop ME/CFS (85% of ME/CFS cases follow a “long” post viral syndrome whether covid, sars, west Nile, EBV, CMV etc). Some will not develop it & will have just the chest/breathing issues. Others will simply recover from their post viral fatigue (as a decent percent do every year).
Hopefully this is the wake up call for research though, as the history of ME/CFS & other “long” conditions is horrendous in its dismissal, neglect & total lack of funding by the medical community.
Does anyone notice this?? When perhaps having a small crash, or setback and feeling fatigued...my urine is very clear if not a tad green. And when I'm feeling normal, it's yellow...like always. Is it just me?
@@user-rv7gd4fo6j and only when you're fatigued, etc?
I have not associated it with crash or not, but quite often my urine is very yellow, with a strong smell of cinema popcorn. I had that for many weeks 10 years ago when I had a food poisoning due to not enough cooked chicken in a restaurant.
@@user-rv7gd4fo6j I think it's when the body is running on tryptophan instead of glucose...and that should mean that you are not at your best.
@@alexandrecouture2462 mine has a different smell when it's very yellow too...and not much of any smell when it's clear and I'm fatigued. Gotta be something to that.
@@lgmnowkondo938 I have to confirm, but I think its like that for me too.
THANK YOU GEZ!
Thanks Jenny!
Sadly Ron Tompkins died recently.
This maybe his last interview.
He was an amazing researcher
RIP Ron
As far as I know this was his last interview. Very very sad.
RIP Ron. Ronald Tompkins died on Jan 17th 2022. A loss to the field of ME/CFS research.
I feel like the medical community is too hung up on doing and accepting only the "perfect" research. It will never happen and time is a wasting. With long covid, there are so many hypothesis I think the dart board approach to see what sticks is the only way this will ever get solved, just like any discovery usually happens. Essentially that is what we are all collectively doing on our own, but without collective evaluation, prescription drugs and medical equipment. We need them to quit spinning their wheels and get it going.
If SARS COV2 better replicate at low tissue temperature in different tissues ,after what say Christian Drosten a year ago atTWiV Nr 659 at min29 ,low body temperature enhance ,theoreticaly, this virus replication.
Thermogenesis can be lower If muscular tonus are low, like in rachitism.
Night body temperature decrease, especially If muscular tonus decrease.
If ,,low temperature agglutinine,, occur at some elderly patients also high body temperature can protect against blood microagglutination.
I wake up feeling like I am dying or that I have been poisoned.
How about this? Some days I feel BETTER than I used to at baseline pre covid. I feel stronger and smarter, and my chess rating will back this up. Chess rating will crash when I'm in a setback...and when I have these upswing days I will crush people in chess like never before. And one other piece of note...every single time I get one or two of these amazing days, they are quickly followed by a crash. I always proclaim that I'm over long covid during one of these great days, and within 2 days, I'm not great. It's really like clockwork.
Yes it feels like u have recovered, but next day it starts again again after some days it starts again
Hope you don't have ME,CFS, it crap!.
Technically anyone with LC for more than 6 months has it, I think!
I'm sure I read about microclotting had been found in people with M.E.
Somewhere in the book Fatigued to Fantastic.
A basic understanding of the literature shown M.E. does not = CFS. The former is unequivocally caused by cocksakievirus, the later is anything from undiagnosed Lyme disease, autoimmunity or multiple viral infections, namely ebv, cm and hhv6. The problem here is basic logic. The error is: 'CFS = ME because both have exhaustion as a symptom but fatigue is a symptom of nearly every disease in the textbook of medicine!!! This matters. Malaria is not dengue because both share fever is a symptom. You do not treat herpes viruses the same way you treat coxackievirus so this false equivalence is ruining research and harming patients. M.E. IS NOT CFS AND 'ME/CFS' IS NOT LONG COVID
Detractors = NIH and CDC from the get go. Hmmm. Osler's Web by Hillary Johnson is still playing out the same as in the 1980s.
I also like your hair. Are you wearing wool?
Haha, thank you for the compliment :) No - not wearing wool - why do you ask?
Ridiculous modern medicine😀💊
a depressing watch
Not impressed with this doctor. He seemed disinterested and didn't elaborate much on his answers.
Do try to sit in on OMF meetings when they come up. Impossible for Dr. T to get into depth on any topic. I read all the published works. ME 21 yrs. All the best.