The Top 15 Misconceptions About Long Covid | But What is the Reality?

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:

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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:

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REFERENCES:

Deconditioning smackdown

Auto-immune reactions in LC

Microclotting in LC

Persistent endotheliopathy in LC

Platelets cause Endothelitis

36% don't make antibodies

How To Avoid Long Covid:

Long Covid in Children:

Why Is Everyone Testing Negative?:

RESEARCH LIST:

Endothelium and micro circulation cause LC

Platelets cause Endothelitis

Immune Wrong spike reaction - auto immunity

Auto-immune Berlin Cures

Anaerobic metabolism

Studies:
Brain impact / neurological

MCAS in Long Covid

Antiphospholipid and Sticky blood in Long Covid

Breakthrough cases - long covid

MCAS and POTS

50% of long haulers are APS and sticky blood

203 symptoms

Ebv reactivation

Brain hypometabolism

Long covid in China

36% dont make antibodies

Vaccine halves chance of LC

Vaccination doesn’t prevent long covid

1 on 7 kids get LC

Auto antibodies and hypoxia - bang on

Auto antibody ACE2

Evidence for persistent coronavirus:

Gut persistence at 6 months

44 autopsies widespread persistence

Viral persistence in macaques

Micro Clotting in plasma

[cloudberrytart]

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.

[KatDorroughMusic]

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!!!!

[medicalerrorinterviewspodc]

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.

[samikassou]

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.

[jessedwards]

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😊

[Bushidounohana]

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!!!

[pmsavenger]

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.

[Sophie-vldj]

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!

[goodlivingmagazine]

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

[syamimsirajudin]

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.

[FionaEm]

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.

[missme]

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.

[pcphilanthropy]

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!

[aineotoole]

Gez this is your best video yet for the general population! People who haven't experienced it just don't understand it.. Thank you!

[lisaromano]

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.

[scripturethroughancienteye]

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.

[boxerdogmum]

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. 🎄

[betsybasom]

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! 😀

[mistymango]

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!

[mariedavis]

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!