The Top 15 Misconceptions About Long Covid | But What is the Reality?
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- Опубліковано 10 чер 2024
- Despite vague attempts by the media to cover the subject, many huge misconceptions about Long Covid persist.
I put a shout out on twitter to gather the most common misconceptions that long haulers have faced, and in this film I set out to take them down and dispel the myths one by one.
If you want to see more misconceptions - here is the original thread:
gezmedinger/statu...
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The Long Covid Handbook (Oct 2022), by Gez Medinger and Professor Danny Altmann and published by Penguin Books is now available in paperback, ebook and audiobook. A singular resource that brings together everything patients, clinicians and academics have learnt about the condition since early 2020, as well as lessons from sufferers and researchers of ME/CFS and other chronic conditions. It offers world leading expert advice on understanding, managing and treating Long Covid. The Long Covid Handbook is available from the following links:
US: a.co/d/0gvkJCU
UK: amzn.eu/d/9KjurGb
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REFERENCES:
Deconditioning smackdown
www.healthrising.org/blog/202...
Auto-immune reactions in LC
www.sciencedirect.com/science...
Microclotting in LC
pubmed.ncbi.nlm.nih.gov/34425...
Persistent endotheliopathy in LC
onlinelibrary.wiley.com/doi/f...
Platelets cause Endothelitis
www.science.org/doi/10.1126/s...
36% don't make antibodies
ahandvanish/statu...
How To Avoid Long Covid:
• How To Avoid Long Covi...
Long Covid in Children:
• Long Covid in Children...
Why Is Everyone Testing Negative?:
• COVID-19 Antibodies: W...
RESEARCH LIST:
Endothelium and micro circulation cause LC
www.frontiersin.org/articles/...
Platelets cause Endothelitis
www.science.org/doi/10.1126/s...
Immune Wrong spike reaction - auto immunity
daveleeermd/statu...
Auto-immune Berlin Cures
www.sciencedirect.com/science...
Anaerobic metabolism
www.healthrising.org/blog/202...
Studies:
Brain impact / neurological
www.nature.com/articles/s4159...
MCAS in Long Covid
www.sciencedirect.com/science...
Antiphospholipid and Sticky blood in Long Covid
www.healthrising.org/blog/201...
Breakthrough cases - long covid
www.theguardian.com/commentis...
MCAS and POTS
www.ahajournals.org/doi/full/...
50% of long haulers are APS and sticky blood
www.healio.com/news/rheumatol...
www.politico.eu/article/scien...
203 symptoms
www.thelancet.com/journals/ec...
Ebv reactivation
inews.co.uk/news/health/long-...
Brain hypometabolism
ahandvanish/statu...
Long covid in China
elisaperego78/sta...
36% dont make antibodies
ahandvanish/statu...
Vaccine halves chance of LC
thelancet/status/...
Vaccination doesn’t prevent long covid
ahandvanish/statu...
1 on 7 kids get LC
daltmann10/status...
Auto antibodies and hypoxia - bang on
onlinelibrary.wiley.com/doi/a...
Auto antibody ACE2
news.uams.edu/2021/09/09/uams...
Evidence for persistent coronavirus:
microbeminded2/st...
Gut persistence at 6 months
bmcgastroenterol.biomedcentra...
44 autopsies widespread persistence
www.researchsquare.com/articl...
Viral persistence in macaques
www.mdpi.com/1999-4915/13/8/1673
Micro Clotting in plasma
cardiab.biomedcentral.com/art... - Наука та технологія
I'm a Long Hauler since March 2020, and so many of these points really hit home. Videos like this are a form of group therapy for me. It's been so challenging to cope with how drastically my life changed in what felt like the blink of an eye, and have so few answers as to why. (Not to mention dealing with disability insurance trying to gaslight me so they don't have to pay.) Thank you for all the work you've done on this, and reminding me over and over that I'm not alone.
You’re absolutely not alone Carolyn!
@@RUNDMC1 Gez, have you taken the booster and did you have any adverse effects? I am reluctant to take it for now. Are you aware of the aspiration issue and that the nurse should aspirate ? Dr Campbell has reported on this. Thank you for your excellent reporting.
@@wildhorses6817 I'm also unsure about the boosters... They are probably untested on long-haulers, and there is a chance the constituents could provoke worse autoimmune and inflammation responses.
@@wildhorses6817 I am recovered after 18 mths, decided that i am more frightened of getting covid again than the jab so hav had all 3, Az first then phizer last week, i am 59. No reaction apart from a bit of a sore arm and if anything, feel extra good after the last one (touch wood) good luck
@@wildhorses6817 I'm not sure if you're aware, but he did a video a several weeks back looking at survey results of effects on Long Haulers getting vaccinated. Basically, it's a mixed bag with most folks reporting no change in condition or slightly better. There was, however, a notable percentage who felt worse. It was one of the data points I used in determining whether I should get boosted. I took the chance (mid-Nov) and I'm glad I did. It's been a nice little boost in the right direction for me. But that's just me. I wish you the very best in your healing!
I’m 21 months into LC (first symptomatic March 13th 2020) and still barely able to function. I’m still unable to work. It takes everything in me just to take my kids to and from school. Their dad (my ex) passed away from Covid in August (he was unvaccinated) so it’s just me. Long Covid is life crushing. My biggest pet peeve is the “well you look great” or “you sound better” that basically invalidates everything we’re feeling because we don’t look like their version of how a sick person should look.
Side note: It’s taken me an absurdly long time to write this comment because I keep getting confused and can’t get the jumbled thoughts out of my head into sentences. Then I get lost again trying to figure out where I was going with the sentence I’m typing but it doesn’t make sense in my brain so I’m stuck reading the same incomplete sentence over and over and over again just willing it to make sense. It’s freaking infuriating!!!!
Feel for you! Totally understand. I find it so, so difficult explaining myself x
What are your semptomps ? Get well soon ...
I know exactly what that cognitive dysfunction is like!
love you Kat hope you're doing okay these days it's really rough, my mom has been very sick with this for a long time it's beyond heartbreaking, stay strong you will recover!!! never give up do what you can to be happy
Kat, how are u now?
As many in the MEcfs community predicted, it would take many physicians getting Long COVID / MEcfs in order to stop the gaslighting that is embedded in health care toward people living with MEcfs. Hopefully more physicians will join your call for education of your colleagues.
I feel like every GP in the country needs to see this. Same with the Long Covid clinic's. We know more about it than they do! Great work again Gez.
Thanks Sami!
GP’s in USA are bought off by big pharma & insurance companies, they have been for many years.
It’s really true what you’re saying. I’m in touch with the nationally designated institute dealing with long covid in my country. They don’t know much. And even worse, I tried to share what I know so it could help benefit other people, but they couldn’t distribute what I know cause it hadn’t been medically tested. It’s pathetic. And people are suffering as a result.
@@garypritchard9787 Yes, absolutely true.
@@teddybearroosevelt1847 I tried to do the same. I joined a long covid clinic and had to withdraw from the sessions the advice was so detrimental to my health. I tried to help them out but I was shut down - after all what would I know I'm only a long hauler not a medical health professional 🙄
So frustrating. I got tested to rule out Lupus bc of my symptoms. When that was negative, the dr said he couldn’t define my autoimmune responses, handed me a fibromyalgia flyer and sent me on my way. I have random inflammatory symptoms, low energy, and chronic allergy symptoms. The doctors have no clue and said to stop chasing symptoms and wait it out. We need better answers than that!!!!!
I've recently found your videos. I'm 37 and have been severely ill with CFS since I had my daughter 13 years ago. Covid long haulers research is finally giving me hope that the necessary funding and research finally happening will figure us all out in the LC and CFS community! Wow, it's about time. Maybe my daughter will one day see me well and able to leave the house and live life with my family ❤ stay strong guys, with enough people sick, they'll now see us😊
Amén
I’m a ME/CFC patient, too. I found out about my up to that point unrecognised condition, when people started talking about Long COVID… Thank you for showing up and making our condition public!
@@sabinezollner3917 yes it's nice for the world to recognize what we've been experiencing for so long. Have you had success with any treatments? Have you seen videos by Dr Bruce Patterson discussing immune abnormalities, test, and treatment?😊
Thank you for your work-“celebrating” 20 months of illness in a few days myself. You echo my experience to the letter, and your generosity in sharing is absolutely invaluable-thank you so much for the strength and inspiration!!!
No worries - thank you Brian!
27 year old, healthy, fit, never had any health issues. 12 month - long covid, I'm getting better but still suffering with fog, headaches everyday. Finally seeing a neurologist in February... wish every GP in the UK watches your video cause they are so misinformed.
Hi, what kind of supplements or treatments have you been using? I’m 30 and I never had any known health issue before, either. I’m also 12 months- Long-Covid. Take care!
OK heard this in internet. Soak hands and feet in warm water and put ice pack behind neck. I have not tried it. Fellow long hauler.
Well done for keeping it together again Gez! I feel like we're all ready to explode with frustration and desperation and all the research we've gathered that no-one in the NHS is listening to (in my experience - thank you to those who are, I wish I could find you)! It's SUCH a battle trying to navigate your way from GP to GP, through long covid clinic wait lists and endless irrelevant tests put in place keep you waiting and waiting and in the end you may end up with... CBT. We don't need CBT, we need trauma therapy to unpack the months of neglect, medical and political failure, gaslighting... oh and the illness that has claimed every aspect of our lives! As you say, this is NO quality of life - we're punished for every move that we make. And it doesn't stop there, it has implications of every relationship you value. From those who have to care for you, to those who think you're letting them down. Long covid is so painfully real... I feel like I could break my pelvis and not feel a thing anymore! Thank you Gez, as always!
Thanks Sophie - I watched this film back once I’d edited it and realised I came across a bit angrier than I’d intended. I usually try to keep emotions out of it but it can be difficult sometimes!
@@RUNDMC1 Yes... there is a new sense of urgency with Omicron soon to effect the lives of thousands-millions more! I think you're right to keep it real!
So eloquently put. I have just handed in a letter to my gp practice manager telling them I have ever felt so let Dow by them. I've spoken with 5 different drs in the practice and got nowhere. Told a referral to a rehab clinic was being made for me 6 months ago. Didnt happen! Not even officially had any kind of diagnosis. It's just ASSUMED to be Long Covid. No referral or input from OT for help - have had to do that myself. The very meagre pacing instructions handed out, resulted in me continuing to over-exert myself to the point I am even MORE intolerant of exercise and unable to be on my feet for more than a few minutes. Am sick of having to fight to be understood. How is one supposed to get disability when your own doctors do t believe you?
Excellent video 👏 As someone who's had ME/CFS for over a decade, I can relate to practically every myth you mention. I urge viewers to ignore the pressure to exercise, push through, buck up etc etc. Rest, rest, rest - and when you're upright, never do more than your body can handle at any one time. This won't cure you, but it will help reduce the risk of getting worse.
Dam sorry it’s been a decade. There are gonna millions more like your self including me. Disability will suck
Thanks
Endlessly thank you for keeping this going, and for how you keep making these informative videos when there's still so much misinformation. At times these videos saved my sanity, when no one else would acknowledge what was happening.
I'm finally mostly recovered(after about one and a half year), and ran 5k this morning(and yesterday, for that matter), and is now out and about in the world again, but faces essentially every bullet point on this list when I am trying to explain my experience with long Covid, and what I've been up to for the past year and a half.
I'm definitely putting this on my "videos to check out before you start asking me questions."-list.
I hope you get a wonderful Christmas, and again, thank you.
Thank you Kat - and so happy you’re able to run again!
Kat what symptoms was you suffering with did you start to feel better slowly or all of sudden your symptoms gone please let me know i am also long hauler for over year. I am really concern
@@manindermanku8667 Hi! ^^ I was a bit of a mixed bag, very severe brain fatigue, with trouble talking/memory, I was exhausted and if I did anything remotely taxing(such as made breakfast), I was done for for the rest of the day. I had a pulse that skyrocketed from small exertions, and gained about 20 kilos on top of having muscle atrophy, so I had constant joint pain. I also had trouble breathing, and constant chest pains that doctors quite frequently thought was a heart attack. And I'm bipolar, so my mental health eventually crashed.
I started noticing something tiny, as if things were shifting, with the first dose, and after the second, at first I didn't think there was much more of a difference, but I started to notice that I could do things like walking in steep stairs without getting instantly knocked out, I was swimming and I kept swimming, I could walk and carry things without it being instantly punished. I was in terrible shape, the worst of my life, but I started to notice that it was my bad shape and not the covid symptoms that was the limitations. And then from there I started to rehab slowly, and have been picking up the pace, and now I am working out proper, and I'm running again. For me, the turning point was the second dose. I also have a third due to paperwork issues, and I'm not sure if that one helped things more. So I'd say it was fairly quickly, as I had my second dose in mid July, and I went back to the gym in mid September. It wasn't as if I woke up one day and it was fine, but more like I realised that the claws of long covid had loosened and I could start fighting my way back up to the surface.
I understand that concern, oh so well. It is awful that you have to go through this. Vaccine dose could be worth trying out, if you haven't, and Gez have a lot of great videos with tips on how to manage, but you're in this comment section so I will assume you kinda know that already, and I am just stating the obvious. I wish I could give you any useful tips in how I got better, but I think I was mostly one of those who were really lucky, where the vaccine helped. >< But you take care of yourself, ok? I know it's painful and feels hopeless, but I really hope things turn for you soon!
@@pmsavenger Congratulations on how far you've come! Thank you for sharing your experience!
@@pmsavenger thanks you for your reply 🙏
This is quality content.
I don't have long Covid, as far as I'm aware I've not been infected as I've shielded & WFH for nearly 2 years.
However, everything you describe has been my experience with chronic illness & autoimmune disease for which I take immunosuppressive medication-hence the shielding.
This mass disabling event of people becoming as sick as people like me is truly heartbreaking. The apathy around it more so.
I really do believe if I or others in my circumstances get the virus, the outcome is unthinkable.
As it already has been for formerly healthy people who are now disabled, and formerly disabled people who are now even worse or sadly haven't made it.
Thank you for all you are doing to get this information out there.
It's not "just a cold" for millions of people.
So true I've had five vertebrae fused in the last five years and I've had two Delta and Omicron and not ban been vaccinated and it's it's pretty much ruined way of life
Gez this is your best video yet for the general population! People who haven't experienced it just don't understand it.. Thank you!
Thank you Aine! Glad you appreciate the work :)
Thank you so much for this, Gez! I will be sharing this often because I have heard every single one of these misconceptions from people close to me. I laughed in solidarity when you mentioned you preferred being in the hospital for your broken pelvis to having long covid, because I have felt the exact same way. I recently had surgery on an ankle injury and I would actually prefer going through that ten times over to having long covid. That might sound like crazy talk to non long haulers, but we get it! 😀
Absolutely! Thanks Betsy :)
This is helpful for LC sufferers because it's cathartic for our frustration and reinforcing. But the real gain would be for non-LC sufferers to watch it.
It was written with that audience very much in mind!
Just rewatched this video and decided to read the comments. Yours is spot on re: how others (family, friends, and care providers) approach (or actually AVOID) people suffering from this... sometimes feels like getting a dollop of desolation just to top off a cursed and *chronic* Covid custard that you never even ordered!!! 🍨 Best to all, KEE, MD
As somebody that’s on week 4 of recovering recovering from covid this is spot on. Im in great physical condition (lift or cardio 5-6/days a week), eat a clean diet and supplement accordingly and have done so for almost 2 decades. I had a “mild” case but it was definitely the worst I’ve ever felt. On week 4 I still have lingering sinus congestion and constantly have the feeling of needing to clear my throat with nothing there. My energy is SLOWLY coming back but the there are days where I’m still extremely fatigued from sun up to sun down. Thanks for putting this out there and a speedy recovery!
How are u now?
@@shaft657 Still have mild loss of sense of smell and get contact rash incredibly easy (never was an issue prior to covid)
Well, great to hear u are doing better than 8 months ago, I believe u will fully recover soon... take care
You've kept me sane these past 13 months and this is another great video and resource for me. If you ever feel up to flying to Alaska and going skiing you've got a place to stay!
Thank you Laura - Alaska is totally on the bucket list!
Gez, so sorry you’re still suffering from this. I hope 2022 is your year. Thank you for all you’ve done for long-haulers. 🎄
Hey. Happy new year. How are you doing? I am been following your comments and recovery from sometimes. I hope everything is good now.
@@PR4SAN I am good, thanks. Today I did some difficult yoga, went for a dog-walk in the snow, did some housework. It’s my day off, but I’m back to my usual work hours now too. I go to bed around 22:30 each night and get up at 07:00. I still meditate or listen to a yoga nidra most days to keep my mind clear. I can have wine now but I haven’t gone back to caffeine.
@@boxerdogmum583 Good to see you improved so much. This month i entered 8 month's mark. Still disabled by POTS and other conditions caused by POTS. Nothing has worked so far. Hoping this year will bring some change and I will recover.
@@PR4SAN I hope you recover soon too ❤️. Have you considered getting a fatigue coach? I found that helped me be proactive in my recovery.
This is very interesting. I am in the middle of my "fall down the long rabbit hole" of Long Covid. I have had PEM, trips to ER with severe breathlessness and palpitations solid for 12 hours after a prescription of steroid from my GP. Then there was, what I know now to be 24/7 adrenalin rushes and insomnia, for a few weeks. Lately a complete inability to walk any distance due to breathlessness. Basically having to lie on the sofa and wonder how I will make it up the stairs :( ....At this point (fingers crossed, triple crossed) I have got back to daily walks for the past ten days after a visit with my physio who told me I had to retrain my breathing pattern as it was out of whack. I had been telling my doctor all the time that my breath was very shallow unless I concentrated on it. I was amazed to find out it is possible to retrain my breathing. As a singer I have lots of knowledge about breathing and within 24 hours I was walking confidently around the house. But while Long Covid is not over for me yet, I think in my case this breath work is an essential element in my recovery. Thanks so much, Gez for all your work bringing this information to the public. I wish you a full and complete recovery in the not too distant future. Let us embrace this journey and not be afraid!
Great to hear of your improvement, and yes I’ve been banging on the breathwork drum for ages!
The adrenaline rushes are the worst!
Yes, you will get better. It's an adventure forsure. I had insomnia too for 3 weeks w/ adrenaline feel for a month. I had it in Jan 2021
My husband had POTS after the steroids and hospitalization. He went totally keto anti inflammatory diet and he is almost totally well after 4 months.
@@boxerdogmum583 Hey I was thinking about you the other day - hope you are still doing well - your messages of your own journey were so supportive - Happy Christmas x
Hi Gez thanks so much for another brilliant film...I am a long hauler since March 20 and so much of what you said resounds with me. I had to give up my job, and feel there is such a lack of understanding about the condition...and such pressure to say that you are better.
Long covid clinic in Devon has not been much help. So reassuring to hear that some people understand!
Thank you Marie - sorry you’ve had a similar experience with the LC clinic. Best of luck with your recovery.
This channel has a real grip on the salient facts relating to Long Covid. I think it typifies the era we live in, that within the community of sufferers, we find people motivated enough by the harm it's doing to marshal the facts and illuminate the way. Assuming there is an exit for this chapter of the story, I suspect I'll look back at this channel and be exceedingly grateful for the time you've invested in it, for all our benefit.
Thank you Jag - I’m optimistic we will all exit this chapter.
I needed this video today. Thank you 🙏. I’m sharing with my friends and family as well as my physician. I’m trying so hard to stay positive despite the many challenges long haul has presented. This really helped just knowing I have a tangible summary to share as evidence that my problem is not because I’m not getting out enough. I’ve embraced pacing (learned from your previous videos) and saving energy for things I must do. It’s helping me. Thank you so much for these supportive and educational videos. Wishing you continued strength and safety, Lisa.
Sorry to hear you don’t have much support around you Lisa. Best of luck with your recovery.
I hope you can find some support. My friends and family feel bad for me but don't really know what they can do to help. I mean, I am fortunate that they give me the space to heal even though it's taking so long. I'm even lucky enough to have a primary care doctor who listens and wants to help even though she isn't sure what to do. But online communities - especially this channel! - have been a wonderful resource for me. All I can say (which is something Gez has said alot and you're clearly aware of) is pacing is so important. Pacing, diet and time. I've tried a few different supplements and sometimes they seem to help a lot. IMHO Vitamin D has been really important. But ultimately, it's pacing, diet and time. Celebrate the small steps forward and understand there will be setbacks. I wish you the very best on your continued healing!
@@RUNDMC1 thank you. Friends and family are trying. It’s just the duration of this is so long. I got sick end of September 2020 and truth is life goes on and so many need help. I do a lot remote to help newly diagnosed and other long haulers. I’m a nurse so it’s important to me but those around me want to see me well and think just shaking it off would help. One of the very important things you said was “I look well and people can’t see how I’m feeling inside”. That’s exactly it. Now that my hair has grown back. My weight is back to normal and I don’t look like I’m going through chemo, people will say you look great. Let’s go here - let’s do this. It lets them down when I say I can’t. Day by day. Pacing. Staying positive. Thank you again Gez. Happy Holidays. Appreciate all you are doing.
@@davidhanselman9050 thank you for sharing what is helping you and your experience. I wish you continued strength and healing. I’m learning what works for me and what doesn’t. I have tremendous food intolerances post Covid and also realized even some of my vitamins were upsetting my stomach. I shifted food and vitamins to early evening so I can just lay in bed if I feel sick or the brain fog comes on. I eat very light during the day because I’ve definitely noticed (for me) that after a meal or vitamin I’m fatigued and sometimes wicked brain fog. This group helps so much. I got sick end of sept 2020 so it’s been a long time 😢. Learning from others - qualitative data “the patients voice” is critical to understanding long Covid. If we wait for the medical community to do peer reviewed academic research and figure out a treatment we will be frustrated. They - understandably - are focused on acute Covid care of so many and so understaffed. It worries me the burden on our healthcare workers. They are working so hard under such stress. . I’m hoping we see an end to this pandemic soon and hopefully the collective power of survivors sharing learnings will assist treatment plans. Thank god for Gez leveraging social media to collect data and the physician speakers he coordinates to help us navigate. Appreciate all of you. Hope you have a wonderful holiday, Lisa. 🙏 thank you for replying.
I send all my family and friends this. A week later it’s like they never watched it. I have so much hate for the human race at the moment. Selfish ass species. This alone has taken me to a terrible low. I have depression now that I can’t do anything that requires loads of thought, and physical activity. I just sit in a chair and cry myself to sleep sometimes as a 38yr old man that use to weigh 205lbs of solid muscle, bench pressing 350lbs, cycle 25 miles a week for cardio, play with my kids, have conversations with my friends and family. Im just a fucking waste now just breathing in this life. Can’t work, racked up $30,000 of credit card debt in 12 months, no insurance, feeling less of a man cause my wife doing everything, which I believe she will leave soon. I’m 👌🏾close to ending this chapter. I give this condition 1 more year.
Another excellently clear and insightful video. I wish this will have *millions* of views, and hopefully some from health care providers as well. Misconception #13 is the key imho. Thank you, Gez 🙏
Thank you Gez! Best source of information I have found and in the early months just hearing someone else talking about how I was also feeling made a huge difference. Can't believe we are both still battling it nearly 2 years on though.
I know - sucks doesn’t it?
Once again, I just want to thank you for all your work. As a fellow long holler, it's been a horrible ride with several days where I wished for death, and several times when i could have sworn it came for me, but through it all your videos have helped me a lot and more importantly been a tool i can use to explain to people around me what I'm going though, because for some unholy reason when I say it no one believes it but your videos add credibility to what I'm trying to explain to them for almost 1.5 Years now.
I know - it’s madness isn’t it?
Another great video! So many of these rang true for me even though I have a great medical care team who's closely watching the research. I had a friend ask me if I had pre-existing conditions which is why I'm still dealing with long COVID 13 months post-infection. So wild, considering this person knows me well. My other favorite: "Why are you still sick?" 😶
Oh my goodness this was so great. Thank you for putting it to video. It’s been 13 months for me and I’m still struggling and I can’t believe all of the misconceptions especially number four and number 13 those two really get me.
Thanks for doing this, it is very hard to describe how miserable this is. People just don't understand what is wrong when you look perfectly normal. Going from being highly active to not being able to do anything is like being in solitary confinement. Even your brain uses a lot energy as I can't even do mental things like simply reading a book because it causes headaches and more brain fog. Your comment about a lower quality of life than a advanced cancer patient is totally believable by me, do you have a link to that study? I would like for my wife to see it as even she thinks it is not that bad. Thanks as always for doing these video's. I look forward to them.
How are u now?
These fifteen common misperceptions are brilliantly addressed here, quite clearly and in ways that can make a tremendous difference. Yes, long COVID is not rare, nor is it not a big deal. Hopefully this video will be widely shared, and help raise awareness.
Thank you Cynthia!
(Not a sufferer) I was struck by #4: not correlated with severe disease. I had just seen a video from the Mayo Clinic in which Dr. Greg Vanichkachorn reports only 25% of their patients with post-COVID syndrome had been hospitalized in the initial infection. ua-cam.com/video/otg1kuUHrrM/v-deo.html
I am very concerned that so many people are thinking infection with the Omicron variant is a "natural" alternative to vaccination. Even "Russian Roulette" has better than 3 in 4 odds of avoiding the bad side.
@@RUNDMC1 have you gotten better? 2 years is very long currently at day 30 and very fatigued and some brain fog
@@LordDarthTrader 2 years is fairly common with long Covid, unfortunately. I was first symptomatic March 13th 2020 and I’ve been sick ever since. It’s been a little over 21 months for me. I hope you’re one of the lucky few who fully recover but be prepared for a long battle with this.
@@KatDorroughMusic I hope you are better. Ive had long covid-19 for 21 months too. Never gotten better. Just when I was starting to have a little more energy but when I got the moderna booster, all my long haul.symtoms got worse again. Its been pretty bad. The exhuasted, brain fog,, can't sleep, the stomach aches, diahrea, the arthritis that effected my hands and mono too...I could go on and on but to overwhelminng. Do you have anxiety, overwhelmness and moods too? Thats been very hard. I hope u are better. 💜
I was a 47 year old athlete, able to do 30,000 steps some days all while lifting 25,000 lbs. now doing the dishes floors me for hours, I drink 400 ounces a day and am still thirsty and omg the headaches. Thank you for your work this is paralyzing.
Completely with you Anthony
This is why early treatment of covid to crush it in the respiratory phase is so important
Thankyou for keeping us updated Gez.
The fact alot of doctors don't even what to acknowledge this condition (Long covid)I just don't understand.
If they are encountering patients afflicted with these symptoms and able to find the same research details that you can find Gez why wouldn't they be accepting something is going on even if the answers as to exactly what has still to be established.
Thanks very much for the comprehensive list of rebuttals:I've been trying to educate both colleagues and my students along these lines, wish l could screen it during a staff meeting! Sobering to realise how devastating it is to quality of life, medical profession HAS to sit up and get educating GPs, at the very least! Sorry you're still struggling but the end will come! 🙏😔
I certainly hope so! Thanks Carol :)
Another great video Gez, Thank you for all your work in helping the LC community. I hope you and your family have a lovely Christmas
Thank you Zac - you too!
Thankyou for continuing to bat on our side . We are all in this together. This is the hardest battle I've ever faced and one with no end in sight.
I take comfort that we do have a voice and if we all shout loud enough, perhaps we will get the support and acknowledgement we so desperately need . I wouldn't wish this barrage of symptoms on anyone . Thanks you for being that empowered voice when you too are going through this illness .
Thanks Ella - and yes I agree, this challenges you in ways one wouldn’t ever have thought possible
Thank you so much for this film Gez! I hope that friends and colleagues will watch this when I share it with them so that they’ll understand the condition better. Another annoying misconception I keep coming across is people believing that long covid = current covid infection for months and months and months and some even think I might give them covid! I would imagine that I’d be one of the safest people to hang out with when it comes to covid at least…
I addressed that contagiousness one in a film ages ago - didn’t realise people still thought that!
Thanks Gez, I’ll try and find that one. Yeah, I still get that regularly from some 🤦♀️
Great stuff as always Gez!
You also might like to know, I mentioned your name in a Long Covid Clinic checkup call the other day. They seemed very knowledgable about you and your videos!
Haha, good to hear! Thanks Ross
Fantastic Video, Gez. Would love my GP to watch this. Spoke to Long Covid clinic last week, and couldn’t believe the clinician I spoke to hadn’t heard of your channel, so made sure to send them over here!
Nice one Danny!
Let's blow them to bits together"..indeed! Thank you! I will share widely and wish people were able to listen who need to....
Thank you!
As will I,
This has brought back memories...! The tiredness so bad that sitting up was too much.... Yes who could imagine.
Thanks for another great video. I hope you will get much better in 2022, I'm there but with very little sport. Have a great Christmas:)
Thanks Edyta!
Being trapped inside a body that no longer functions properly can be very frustrating. This can lead to depression which isn't helped when people accuse you of being lazy.
Very much so
Thanks largely to your videos, I realised that not only am I 'clinically moderately vulnerable' for acute COVID, but perhaps more so for long COVID. Thank you very much, dear Gez, best wishes to you, and happy solstice!!!
Thank you, and happy solstice to you too!
Outstanding video as always, Gez. Wishing you a happy and much healthier new year.
Thank you Lynn! Same to you :)
I had Chronic Fatigue prior to Covid and was successful at scheduling my life to accommodate it ( e.g., planning ahead for activity days and for rest days while working a 40 hour week). Long Covid fatigue is not the same; I wish it was. I personally quit saying, "when I recover" because I don't expect that to happen and have changed to, "this is what I can do (or eat) now" - mentally, it's less stress, especially since there are nearly daily reminders of the damage Covid has caused.
You are a good case study of the comparison between long covid and CFS. I hope you do recover and or make gains towards recovery. Stay strong with support groups.
I have also given up on recovering. If that happens at some point - awesome!, but I won't be too surprised if I just have to live with it from now on...
@@jenniferwinsor7740 I don't think this comparison is helpful at all. There are people with ME from other viruses who have been bed-bound and tube-fed, living in darkness for decades whereas there are people with LC who are recovering or are able to work or at least are not bed-bound. And likewise there are people with LC who are in a worse state than some people who may have a mild case of CFS. Of course if you have CFS and get covid on top you would feel worse! Just as there are some people with cancer who may be more functional than some people with ME or LC, and likewise the opposite. I think it is all very individual and we shouldn't be doing these comparisons.
Elizabeth Dent I didn't say it was a good comparison. I said case study.
tysm, i thought i was alone in this. im a young teen and i contacted a mild episode a covid in the previous year. i’ve been experiencing fatigue and extreme brain fog in the last few months and my condition hasnt seemed to improve either. i’ve often been gaslighted into thinking its all in my head, to the point where im being fed with non prescribed supplements which make little to no difference. i had a check up a month after i was infected, but they dismissed the possibility of long covid without running any tests, which was very unprofessional from their part. people tend to advise me to cut down my screen time and work on other things, but i cant bring myself to focus. its come to the point where i can barely articulate a sentence and everybody around me is in denial. my grades have taken a huge slump, and this could ruin my chances into having a stable future. im at a loss of words
Thank you so much. I am 70 and haven't been right since march 2020. I wish i could lock my friends family and neighbors in a room and make them watch this.
So sorry to hear this Bill
Damn! You hit the nail on the head with this video.
I am going to send to several people who just don’t get it.
Please keep up the hard work and keeping people informed.
Thanks Jerry!
Hallelujah 👏👏👏👏👏 Gez you're a GENIUS and Thank God for you and your research. You're absolutely spot on as always 👏👏👏👏🌲🎅☃️❄
Thank you Dee!
Brilliant as usual, Gez! Keep up the great work!
Thanks Scott!
You're amazing 👏 💖 you bring so much attention to something that Drs turn away from.
I manage my LC well with naps, tapping therapy and mindfulness.
Thanks Gez. This was greatly needed!
Thank you Randy!
I can relate to most of these 15. I had to suggest to my GP my symptoms were long covid because two blood tests came back ok as normal. "Come back in a month if it doesn't improve" he said.
I suspect many people who were were active and fit, had a mild covid experience then started to get ill with all the odd non descriptive symptoms were fobbed off by GP's until they realised it might be long covid. I know that described me, I spent a few months thinking I was going slightly mad trying to fit my symptoms to known conditions. So glad you have made these vids to explain what long covid is.
This channel has been fantastic so a massive thanks to you Gez. 👍
Edited to ask a question.
Did anyone else get sharp "pin pricks" under the skin with long covid?, because its one of the things I had. My cousin thinks it might be vaccine induced Gulliane Barr Syndrome after the AZ jab.
I started getting pin pricks / pins and needles well before having the jab. Like maybe a year before. I think it's pretty common.
I'm unvaccinated I had covid twice and I've got serious neurological issues pinpricks shooting pains but I have had two spinal fusions so that might have a little bit to do with it but I think these are the viruses of excavated it
You nailed it! 100% accurate. Thank you. I will be sharing. Thank you for all of your videos. Loved the one with the beautiful long list of "actually there is more research" on it :-) My doctor declined my offer to forward such a list of articles or continuing ed.
So sorry to hear about your doctor’s reactions - unfortunately this is quite typical :(
@@RUNDMC1 - yes, thanks. Merry Christmas and Thank You Gez for all that you have done to help educate and advocate for covid longhaulers. May greater wellness be your's in 2022.
@@lesliec8069 Thank you Leslie - same to you!
Thank you so much for your videos. Iam an active self employed person who has to do ridiculous tasks in my line of work and always without assistance. I have always worked incredibly hard and know how it feels to be exhausted from Shear exertion. I also spent my younger years as a weight lifter and strength athlete. I know all extremes of tiredness and exhaustion. My covid was a very mild case. After my 10 days isolation I felt fine for a couple of days then it hit me. I have not been able to work for 3 months. I try small steps and it pushes me back. It am now in a serious financial position because of it. Unaffected people seem to think it doesn't exist. Maybe I was a bit flippant about it all in the early days? It's real and it is ruining people's lives. I need help mentally and financially. My GP even said that the NHS long covid support is waste of time so it's up to us to sort ourselves out by following the findings of people like yourself who make an effort to pull in the data from all around. Thanks 👍
Are you getting all the financial help that's available?
@@alicequayle4625 I have looked at ESA and pip but I have been optimistic that I will suddenly improve to a point that allows me to get back to work properly. I don't know of any other help available tbh. Sounds daft but I feel like iam giving up by asking for hand outs.
"Deconditioning" and being told that it was in my head are the two things I hear the most. Went to a cardiologist for having POTS like symptoms off and on and after several EKGs, an ECG and Holter monitor the cardiologist just told me that I was probably dehydrated, having anxiety, and deconditioned.
🤦♂️
It's probably the worst part about the condition - nobody is taking you seriously. It's almost like the problem doesn't even exist to them.
Rresearch more about POTS. This is what we did for my husband and kept him on eliquis blood thinners for over 4 months now. Keto anti inflammatory diet and almost totally well.
Best of luck with your recovery!
Hope effective treatments come along really soon.
Thank you!
Thank you Gez. As always, you say exactly what needs to be said and make a point very effectively. I will make my employer watch this as they don't seem to be grasping it from my explanations 🤣👍
I wish they would put commercials on TV explaining what long Covid is. I've been in therapy for years and my therapist is convinced that I just need to exercise more to build up my stamina. He just can't grasp the concept of PEM.
I've been given a little ray of hope! The mad sweating attacks seem to have gone away. I now feel cold most of the time. I used to be cold all the time so I'm viewing this as progress.
You deserve a better therapist....one that listens.
Very ignorant non empathic therapist. If he had an interest, he would know it is a diagnosed illness. You deserve Better.
This sounds like dysautonomia - get busy with the salt shaker, there aren’t that many ways of dealing with it! Breathwork also very beneficial.
@@medicalerrorinterviewspodc4294
@WildHorses
He's a really good therapist as far as everything else goes; he's just clueless about long Covid. I just keep trying to educate him. I'm stubborn like that.
Great work Gez. Hoping for better in 2022
Thanks Sheila!
Absolutely amazing. Thank you for this. Hopefully people will have a better understanding of long covid now.
That is the hope!
Another great video Gez, thanks for all your efforts.
Thank you Steve!
Gene, your videos save my life. Thank you for all you do. I was wondering if you know or heard of long covid patients having swelling upper left quadrant. I had it for about a year and know many people with long covid that have it too. Do you know if it's skin swelling, spleen, stomach, allergies or anything else?
I’ve not heard about this - sorry Daniela!
Thank you SO MUCH for making this video. Sharing...
How’s the paramedic training going Gez ? Have you had to pause it ? Great video this one , 😁👍happy Christmas 🎅
Yep, it’s paused
I so resonate, had long haul since March 2020 and utterly wiped, even writing this comment is exhausting… great work by the way 👍
How are u now?
@@shaft657 Still struggling... you?
Yes, the fatigue and POTS are kicking me hard... I hope u saw some improvement since this started? Wishing u full recovery
@@shaft657 I wish you full recovery also! I also have POTS/Mast cell activation syndrome etc and the hardest part is others not understanding the fatigue, why I have to 'pace' myself etc... subsequently become isolated (30 months) as difficult getting out and about so I've gone from being a previously full-on active individual/cyclist/social/workaholic/academic to being isolated with seldom interaction with humans... it can cause you to feel like you are 'left for dead' but eventually you pick yourself up, brush yourself down and whilst still struggling with the same symptoms become more resilient, understanding, empathic and stronger individual with a renewed faith. I've not given up and still fighting!
Interestingly, I took a microbiome test (via chuckling goat) and it revealed a couple of nasty pathogens. No wonder I've been bedridden... being allergic to antibiotics I discovered a whole new level of understanding regarding herbs/tinctures (excellent resource is book by Stephen H Buhner). These past few years have been a training ground in fighting post viral fatigue! Perhaps this whole ordeal is repositioning me and eventually the lessons I'm learning may help and make a difference in others. A month after the first covid (had it twice now) despite rarely getting out, I started experiencing tiny black specs coming out of my skin. They were sent to the lab (twice) and confirmed not parasites, cysts or scabies but deduce to be nasty endotoxins. Through trial and error I've been discovering what reduces these endotoxins. As I reduce the endotoxins (using specific tinctures) the POTS isn't so bad. Inching forwards!! I wish you well.
Thanks as ever Gez. I want to broadcast this from the rooftops! How can we get this message out more? I want to lobby scientists to measure it as a matter of course…
Thank you for doing this work for all of us in the Long Haul community!!
Thank you for these videos, I sometimes start to wonder if I'm imagining it and can I just force exercise myself out. Videos like these help me remember that Long Covid is real and that I'm far from alone.
Long hauler here. Taking cold ease every other month. Taking dose of benedryl every three nights. Looking into vitamins and spices for anti-inflammatory and to clean virus debri out. Feeling better after 1.5 years
Many thanks for this, especially description of weakness.
How are u now?
I am so grateful for you Gez, and all of the videos that you have put out about long-covid. They are a life-line for folks like us who have been living with this condition now for almost two years (or however long as the case may be). Without these videos, the research that you bring to light and the long-covid community, I think I would have lost my ever-loving mind and all hope by now! And, this video actually made me laugh - thank you!
Thank you Sarah!
Thank you for this! I’m a long hauler from March 2020 and never developed antibodies. I’m glad I’m not the only one. It been so hard to advocate for myself not having antibodies….
Mine hit early 2020 prior to testing. Im still suffering only 35. Never recoverd and nobody will help.
@@gislelien7600 same exact story. No tests, negative antibodies in May. I started getting long Covid symptoms around May/June
I caught covid 19 in November 2020 and had very mild symptoms initially followed by months of brain fog, fatigue and little smell or taste, fairly mild by long covid standards but still unpleasant. I felt like the infection was dormant, it made a brief resurgence in February and seemed to have more of a go at my lungs for a couple of days. In March my daughter brought a streaming cold home from school and it was a marvelous thing in some ways. At the start there was the weirdest migraine I've ever had, very severe and not on the usual side, it felt like some kind of epic battle in my head. Then I felt the normal cold symptoms but a cloud had lifted and although I felt terrible with the cold I was so happy. My son and daughter both had lingering covid symptoms and both caught the cold, all three of us found that most of our symptoms had disappeared after a couple of weeks, however my migraines have been more easily triggered and my daughter and son both started to have classic migraine (with aura and all the classic triggers, symptoms and stages) immediately after this event, which we now have to manage. Hope this is of interest.
Thank you Sarah. Best of luck with your recovery.
@@RUNDMC1 you're very welcome. There is obviously much to learn here. We were pretty much recovered (apart from the migraine which is probably here to stay now it has been triggered) until last month when we caught Delta 🤦not feeling like we will have the long term symptoms this time though 💪
This is so wonderful and needed. Thank you!!
Thank you Daria!
Jellyfish fatigue sleep now lol loved this video 👏👏👏 and we don’t know what’s going on inside. I’d like to say I’m recovered but am I, not 💯. Thanks for all these Gez 🕊
Gez, thank you for putting this together. Is your list of research available?
I’ll add it to the description!
Excellent round up, I'll be sharing in my reports for long covid cases
Another superb, pithy video. Thank you, Gez. And thanks too to all the experts you've interviewed.
Thank you Helen!
What are the symptoms of micro clotting? I experience a lot of cramps in feet with distortions I also experience points of cramping in calf muscles when I get up to walk which can happen repeatedly with tightness in legs. Trying to work out if related to my other long COVID symptoms? Enjoy watching your informative films. Many thanks.
Thank you so much , I decided to watch all your videos I hope they find a way to treat long covid , next week is going to be 2 years for me
Best of luck to you in your recovery Amir!
Right back from Christmas, with people who says that you have nothing and that they know better than you on the subject. Oh well...
It's very similar to Lyme disease. And there is plenty of research about bartonella and microclothing effect. It's very interesting and I hope we will find a solution soon. Cause this disease is awfull in a evil way.
There is a lot of interest in coupling the Lyme and "Long COVID" efforts; virtually everybody agrees they are much more similar than different.
*Why is a rando who does not even know anybody with Long COVID subscribing here?*
1) Because I am increasingly concerned (as I learn more) about the impact of "long covid" on an ever increasing number of people.
2) Because it affects even people - many of them - who did not experience severe disease.
3) Because it can last years... maybe indefinitely.
4) Because it will be with us after we have the infection rate under control.
5) Because this site has little or no misinformation and is dedicated to moving forward.
Hey flagmichael - just want to say thank you so much for the support. I wish we could persuade more people to listen to what is a huge problem (now, and potentially even more so in the future) - but it’s hard getting people to pay attention when (a) the condition is difficult to conceptualise (it’s not like your nose and ears fall off - people would get that) and (b) everyone assumes it won’t happen to them.
If we had more ‘randos’ like you the problem would shrink massively!
It’s such a breath of fresh air to see someone who isn’t a long-hauler actually care and want to understand what’s happening with us. It’s pretty difficult just getting close friends and family to have the patience enough to listen and try to understand.
Sorry to say I do understand these points too well! Thank you for all your research! I’m a I guess an ex- healthcare care provider- because I am not providing much …. Severe long hauler since 7/20. The things I have experienced wow… life changing to say the least. Detrimental Autoimmune issues, asthma WHAT?!? I first told them I DO NOT have asthma … oh I it just keeps going…. Thanks GEZ!!! Helps me feel not so crazy, like is this real?
Herzlichen Dank einmal wieder für Ihre wichtige Arbeit!
Fascinating information. Thank you so much,
Thank you very much for doing this video!
Poor Gez, I Feel Your Pain Brotha, 6months in.
Have you ever discussed Hyberbaric Oxygen Therapy for Long Covid Treatment? I have only seen a few studies done so far but would love to hear what you think of it!
It definitely makes you feel better!
Have you had any breakthroughs yet with your recovery? I am guessing not since you stated you still cant do your old job :( I say i have long covid but mine is definitely different that yours. My issue is my legs constantly feel stiff and jittery as if i just drank too much caffeine. Its super annoying, but I am incredibly grateful that I do not have the fatigue you describe.
Yes I’ve had breakthroughs but not enough to sustain anything like my old lifestyle
So many marathon runners seem to develop long-haul CoVid19 fatigue....something about rigorous exercise TOO SOON after being ill seems to trigger some kind of chronic fatigue syndrome.
I had chronic fatigue syndrome back in 1994-1996. It was AWFUL. I was young and "healthy", or so I thought. It was crushing fatigue, sore lymph nodes, and off the chart high WBC counts that were so concerning my employer's medical department wouldn't allow me to work.
I kept thinking, "If I can just get to them gym to work, I'll feel better". Little did I know the gym WAS what was causing the crushing fatigue.
Careful how soon you exercise vigorously AFTER a viral infection....or you will pay the price in ways you cannot yet imagine.
How are u now?
Another brilliant video Gez -thanks! I am a long hauler since March 20-all you said is true-and the comment from Sami below was true for me- I knew more about the condition from your work than the head of the Long Covid clinic in !
Hi, i think you're positivity, and content is brilliant and is really helping many people. I got a virus ( which I tested negative for on lateral flow a number of times) a few months ago, it seemed to go away, only to come back again. I'm confused as to whether I have pvfs or long covid?
Hard to know without a specific antibody test!
Cannot express what your videos have done for me. Just in terms of validation. Everyone’s been saying it’s in my head. I’m 7 months in.
Also, you’re a very good looking man lol
I had long covid from March 2020 until September 2021. I only started dramatically improving after I began mega dosing with Vitamin C, D, B complex, and A. (Under doctor supervision by holistic doctor). I also added zinc and copper supplements as well as vitamin k and magnesium (vitamin d co-factors). In my experience, Vitamin deficiency really exacerbates symptoms of long covid. When I had my vitamin d levels tested they were rock bottom low and I live in California! Sometimes as we age our bodies don’t do as well at converting sunlight to vitamin d. (I’m in my 50’s).
I also changed my diet to low carb, (see Wahls protocol which also benefits those with autoimmune conditions). no processed sugar, plenty of veggies 🥦 and berries. After about a month of this protocol I began feeling dramatically better and my eyesight even improved. (I no longer need readers and my far away vision has improved as well). In my experience most doctors don’t know enough about nutrition to spot problems due to nutritional deficiencies. I’ve had doctors tell me that vitamin supplements are only good to give you expensive urine. My holistic doctor who holds seminars on nutrition puts it like this. Water is a vital nutrient. While it is in your body, it is doing very important work, then the excess is released into your urine. It is the same with vitamins. Yes, you may pee some of them out, but they are of vital importance to your body.
I'm glad your better. Can you share the information on your Holistic Dr?
Spot on with all of these. Thank you. I had a mild infection, really sore throat then choking coughs but not unwell, was bouncing around the house like tigger waiting for my 7 days to be up. Out for a dog walk on day 8, wham collasping. In hindsight, perhaps should have admitted defeat at the begining and took to my bed! Sorry to hear you are not back to normal, hope its not long before you are.
How are u now?
@@shaft657 i am absolutely fine thank goodness and touching wood when i say that.
Great to hear that... take care
@@shaft657 thank you. Are you ok?
Still dealing with some symptoms sadly
Very informative video, but it all but extinguished my hopes for recovery. Hope is a powerful treatment, when most long haulers are also suffering from depression and anxiety. I would love to hear from those who have recovered and what they did, how long did it take?
Hey gman, the intention certainly isn’t to eliminate hopes for recovery - there’s plenty of positive forward movement in the science at the moment!
@@RUNDMC1 Thanks again. I'm on the Dr. Bruce Patterson treatment program at the moment (Maraviroc and statins, ivermectin, predisone), some improvement but it still moves in waves. Had 3 good days in a row, which is positive, buy my lifestyle has esesntially ground to a stand still, no physical activity whatsoever. Also, my LHS hasn't been long term yet (infected Sept. 2021), so I am just passing 12 weeks now, and my infection was from Delta varient. Not sure if this is signifigant or not. If I continue improvement, I will proably post a note. I know you interviewed Dr. Patterson awhile back, and I don't know if you heard anything positive since then about his treatment and recovery reports. Thanks for your truthfulness, and not exagerating things that may not come to pass.
Wow that was great information. Wish we could figure out what to do about this problem.
I developed cfs in 2007, these are nearly the same misconceptions I heard then. Got no help from medical establishment then & have had long Covid since 12/20 and got same reaction from my doctor. More concerned I refused to take the jab, wanted me out if the office asap.By the way I am 67, was very active, worked out, had cfs beat, back to the same crappy lifestyle, still work full time.
So sorry to hear this Gary
Thank you. I have suffered from ME/CFS for 14 years. Going from supper fit to a blob. I would rather go through a birth every six weeks than have this.
Yes - it really is that bad isn’t it?
@@RUNDMC1 Yes. But it can be lived through.