News about Long Covid including its relationship to ME/CFS 2020 to 2021

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rvallee said:
Technically this is not an ME study but it would likely qualify as the largest study on the disease to date. If the funding is truly adequate anyway. I would like to know more about that study, who is funding it and to what amount?
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Here's a link to the study that NIH is funding. It's an immunology study of COVID patients. Joseph Breen at NIAID did not give us a dollar figure on this study. https://www.niaid.nih.gov/news-events/niaid-study-examines-immune-responses-people-covid-19
 
Andy said:






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I like the article, but just sent them the following short note:
"ME affects approximately 250,000 people in the UK, more than multiple sclerosis and Parkinson’s disease combined. Around 25 per cent of patients are completely bedbound. "
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The usual claim is that 25% have severe ME. However, that doesn't just include the bedbound, but also the housebound and maybe also the virtually housebound.
 
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Tom Kindlon said:
I like the article, but just sent them the following short note:
The usual claim is that 25% have severe ME. However, that doesn't just include the bedbound, but also the housebound and maybe also the virtually housebound.
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Thanks for this Tom - we know we still have lots to learn so always welcome feedback.

Andy said:






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Thanks for sharing this - we're really chuffed as it goes out to 59,000 of our physiotherapy colleagues and is the first time we have seen anything about avoiding GET in Frontline!
 
The article is in Huff post:
https://www.huffingtonpost.co.uk/en..._5ed67b7dc5b68a110026c36a?ncid=APPLENEWS00001
I Caught Coronavirus Months Ago. I Didn’t Expect To Still Be Struggling Now
Seven weeks since I first had symptoms, the ‘long tail’ of Covid-19 continues to plague me.

MeSci said:
I can't see any reference to testing for Covid. Did I miss it?
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No she wasn't tested as far as I can see, but she describes symptoms that fit the covid pattern including fever, anosmia and breathing problems, so it seems pretty clear that's what she had.
Her decription of post exercise relapse sounds very like PEM. Good to see she has realised already that she shouldn't try to exercise her way out of it, and is in an online support group for others in the same position.
 
Trish said:
The article is in Huff post:
https://www.huffingtonpost.co.uk/en..._5ed67b7dc5b68a110026c36a?ncid=APPLENEWS00001
I Caught Coronavirus Months Ago. I Didn’t Expect To Still Be Struggling Now
Seven weeks since I first had symptoms, the ‘long tail’ of Covid-19 continues to plague me.


No she wasn't tested as far as I can see, but she describes symptoms that fit the covid pattern including fever, anosmia and breathing problems, so it seems pretty clear that's what she had.
Her decription of post exercise relapse sounds very like PEM. Good to see she has realised already that she shouldn't try to exercise her way out of it, and is in an online support group for others in the same position.
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I'm guessing Sophie Wilson may have no awareness of ME/CFS, and the implications of such symptoms.
 
Ramey can empathize with long-haulers. In her memoir, The Lady’s Handbook for Her Mysterious Illness, she writes about her 17-year ordeal of excruciating pain, crushing fatigue, gastro-catastrophes, and medical gaslighting. “Being isolated and homebound, incredible economic insecurity, the government not doing enough, testing not being up to snuff—all of that is the lived experience of someone like me for decades,” she says. “The illness itself is horrible and ravaging, but being told you’ve made it up, over and over again, is by far the worst of it.”

Formally, Ramey has myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and complex regional pain syndrome. Informally, she’s part of a group she has dubbed WOMIs—women with mysterious illnesses. Such conditions include ME/CFS, fibromyalgia, and postural orthostatic tachycardia syndrome. They disproportionately affect women; have unclear causes, complex but debilitating symptoms, and no treatments; and are hard to diagnose and easy to dismiss. According to the Institute of Medicine, 836,000 to 2.5 million people in the U.S. alone have ME/CFS. Between 84 and 91 percent are undiagnosed.

That clusters of ME/CFS have followed many infectious outbreaks is noteworthy. In such events, some people get better quickly, others are sick for longer with postviral fatigue, and still others are suffering months or years later. In one Australian study, 11 percent of people infected with Ross River virus, Epstein-Barr virus, or the bacterium behind Q fever were diagnosed with ME/CFS after six months. In a study of 233 Hong Kong residents who survived the SARS epidemic of 2003, about 40 percent had chronic-fatigue problems after three years or so, and 27 percent met the CDC’s criteria for ME/CFS. Many different acute pathogens seem to trigger the same inflammatory responses that culminate in the same chronic endgame. Many individuals in this community are worried about COVID-19, according to Ramey: “You’ve got this highly infectious virus sweeping around the world, and it would be unusual if you didn’t see a big uptick in ME/CFS cases.”
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https://www.theatlantic.com/health/...-coronavirus-longterm-symptoms-months/612679/
 
The Atlantic article was truly fantastic, the reporter really nailed the basic facts and how they tie together. Best coverage of the issue so far.

Another article, seems like there is some growing momentum, it's written by the founder of Body Politic, which published a patient-lead report a few weeks ago: https://www.s4me.info/threads/possibility-of-me-or-pvfs-after-covid-19.14074/page-15#post-260891.


No one knows why these Covid-19 patients’ symptoms keep relapsing

https://www.vox.com/2020/6/4/21274727/covid-19-symptoms-timeline-nausea-relapse-long-term-effects
According to Kuritzkes, post-viral fatigue syndrome, for instance, is sometimes found in patients who’ve had mononucleosis, among other infections. “I’ve heard anecdotally of some [Covid-19] patients who seem to be experiencing something akin to that,” he explained. “Since we’ve only got three to four months of experience in the United States, it’s very hard to say what proportion would go on to develop ... some form of post-viral fatigue syndrome.”

Some researchers are also concerned that Covid-19 might trigger ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), after noticing that some patients with pre-existing ME/CFS experienced an exacerbation of those symptoms after contracting Covid-19. The Open Medicine Foundation, an organization dedicated to ME/CFS research, recently announced a study that will examine the prevalence of potential chronic conditions like ME/CFS in patients with Covid-19.

Another possibility Kuritzkes suggests is that patients with relapsing symptoms may be experiencing an inflammatory syndrome similar to Kawasaki disease, which has recently been linked to cases of Covid-19 in children and young adults. It causes an inflammation of blood vessels that can lead to severe cardiac complications. However, we don’t yet know if this syndrome can develop in people of all ages.

Like many other aspects of the current pandemic, the question of relapse remains unanswered, and the stakes are increasingly high. Almost 2 million people have been diagnosed with Covid-19 in the US alone, and experts believe infection rates may peak again in the fall. Stories of relapsed patients indicate that those who fall ill and survive may still face devastating consequences of the disease.
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It would be interesting to see some stats (might be a bit early) on how many post-covid patients are being directed to IAPT for CBT, no doubt citing 'anxiety' as cause of persisting symptoms (as part of the bPS 'prediction' of 'mental health epidemic').
@Joan Crawford maybe Mike Scott might have an idea if these stats are available anywhere?
 
Don’t know if this should be in a separate thread but.. I recently tested negative for covid antibodies. Im pretty sure I’ve had had the long tail version of it so am pretty annoyed to go through all that and not even got any antibodies out of it!

I’ve seen on Body Politic that a significant number are also testing negative for antibodies.

Leaving aside discussion of the accuracy of tests and whether or not I’ve actually had covid- My question is:-

Is there a scientific reason that the immune system of someone with ME/CFS wouldn’t generate antibodies to the illness that triggered the ME? Whether that be in any post viral illness or any other?

I don’t know if I’m making sense here- feeling like this is an important question to ask I’m even if I can’t quite work out how to ask it!
 
That’s interesting, what antibody test did you get? Abbott or Roche, maybe? Venous blood sample, or finger prick? Did you order online and mail in your blood sample? Long postage delays could affect viability of sample, perhaps.

From the validation studies it appears these tests are >99% accurate, so it’s curious that patients with clinical diagnosis are coming up negative. The antibody test needs to be >3 weeks after developing symptoms.

I think no antibodies is unexpected, but there is so much we don’t know yet about Covid. Perhaps in true immunodeficiency state there would be a paucity of antibodies, but this isn’t the case in ME/CFS.

Thanks for posting this, I’ve been wondering about getting tested myself but would be hopping mad if spent the cash and test was negative lol.

Maria1 said:
Don’t know if this should be in a separate thread but.. I recently tested negative for covid antibodies. Im pretty sure I’ve had had the long tail version of it so am pretty annoyed to go through all that and not even got any antibodies out of it!

I’ve seen on Body Politic that a significant number are also testing negative for antibodies.

Leaving aside discussion of the accuracy of tests and whether or not I’ve actually had covid- My question is:-

Is there a scientific reason that the immune system of someone with ME/CFS wouldn’t generate antibodies to the illness that triggered the ME? Whether that be in any post viral illness or any other?

I don’t know if I’m making sense here- feeling like this is an important question to ask I’m even if I can’t quite work out how to ask it!
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