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

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hinterland said:
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.
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The test was Abbott- through a private postal company that does finger prick tests. Results came back very quickly. The day I sent mine back the UK government ordered that all these tests be paused but I still got my results back the next day.

All the people on the Body Politic forum have had Covid for a long time, way over 3 weeks, so that’s not an issue. Lots of people very upset going through all this and disappointed not to at least get a positive antibody test out of it!
 
Trish said:
Did you and the others who tested negative on this antibody test have a positive antigen test when you were first sick?
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Some did some didn’t; I think there is a survey of some sort going in which will report back in a week or two.

I didn’t test until late on (5 or 6 weeks) and it came back negative. From what I understand it was too late to expect a positive result by that stage.
 
Maria1 said:
Lots of people very upset going through all this and disappointed not to at least get a positive antibody test out of it!
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It may not be accurate anyway. The manufacturer of the Abbott test has said that it's designed to be used with venous blood only, not a fingerprick. They seem pretty angry about it being sold to the public, as the work to determine whether it's reliable as a home test, and if so to what degree, hasn't been done yet.

https://www.europeanpharmaceuticalr...ts-expert-opinions-and-manufacturer-warnings/
 
Maria1 said:
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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One theory of ME is that the virus persists because tricks to avoid the immune system. Enteroviruses, which were implicated in the epidemics, use a variety of things to avoid triggering an immune response. They do not burst out of the cell but keep on replicating inside it as it is the death of the cell that the immune system notices first. They also do not replicate true so that when they do get into the blood stream the immune cells don't realise it is a virus it has met before.

There is also new work on viruses which show they can send bits out into the bloodstream which only join together to make a viable virus particle once they are in a new cell.

There are also viruses which send signals so the immune system fires up to look for a bacteria causing the illness so it doesn't notice the virus. Tricky little beggars :)

This is just of the top of my head and gross oversimplifications but there are lots of reasons why an antibody test would not show a high immune response in chronic disease.
 
Andy said:
Not directly about the possibility of ME but some of the symptoms described sound very familiar.

https://www.theguardian.com/world/2...to-recover-from-covid-19-coronavirus-symptoms
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An online survey of 151 medical professionals who fell ill in March found 68 are still unable to work. A further 26 went back, only to stop again when symptoms returned.
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That's what's going to make a difference. This is something that has to be experienced to understand how intense those symptoms are. It would be VERY interesting to be able to open a dialogue between those cohorts and, for comparison's sake, medical professionals with ME who have been dismissed for presenting the same clinical profile. Though the wording makes it unclear whether it's 68 total or 68 + 26 = 94. I think it's the latter, which is above 50%, though obviously includes complications from pneumonia and other forms of organ damage. Health care systems cannot handle this, herd immunity would be a total disaster if it's done through natural infection.
People talk about internal shaking. I had that and a feeling like my stomach was vibrating, deeply unpleasant and as if I was being poisoned.
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I'm seeing A LOT of that, it's common. It was reported in large numbers in the Body Politic report but medicine is still largely unaware, or oblivious, to it. Terminology varies a bit, internal shaking or buzzing. One of those minor symptoms I don't think I've ever reported but it's something seeing so many people with it.

This is from a psychiatrist, I wonder if it will change their view on MUS:
“It was very frightening to feel so unwell. Going into week nine I was exhausted. Staying in bed really helped with fatigue but in week 11, I still have low grade fevers, chills, malaise and odd neurological symptoms. I am resting a lot but my improvements have plateaued.

“We don’t know what is causing prolonged Covid. Is it the ongoing initial illness, or is it an inflammatory reaction or is it a post-viral syndrome? We don’t know what the prognosis is or what the long-term consequences are. I wonder how many people are having prolonged illness and what the impact is on the workforce, for example. It’s scary to have an illness for which there isn’t any treatment and that doesn’t seem to be going away.”
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Because we don't have an explanation for those symptoms. Saying it's the virus is not an explanation, we don't even know how those symptoms function or how viral infections cause them anymore than we know how they could linger. Neurologists seem particularly inept here, I've seen several people dismissed by neurologists, sent to psychiatrists only to be told the neurologist was clearly wrong and neurologists actually being huffy about it. FND clearly taking its toll here.

It would be pretty good if the Guardian could revisit its reporting on us, having reported those symptoms for years and objecting to being portrayed as psychological being somehow proof we are mentally ill. The tipping point is near.
 
Merged thread

Comments open--After 6 Months, Important Mysteries About Coronavirus Endure

https://www.nytimes.com/2020/06/01/health/coronavirus-mysteries.html?algo=identity&fellback=false&imp_id=764987108&action=click&module=Science Technology&pgtype=Homepage#commentsContainer

Comments are open on this article--might help to get more coverage on MECFS in the NY Times if folks could add to the comments about 6 months ALSO being the time duration at which the MECFS diagnosis kicks in (& so we should start to see the first Post Covid MECFS patients)--not sure if you need to subscribe to post a comment--Thanks
 
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article:
Will My Covid Symptoms Ever End?
Amy Watson, a preschool teacher in Portland, Oregon, had been fighting a low-grade fever for almost a month when doctors started talking to her about cancer.

It was April 9, right around the time that coronavirus cases were peaking across the United States. She’d fallen ill in mid-March with a fever and flu symptoms, just two days after the state had shut down schools. At that point, as we all are now deeply aware, there was a woeful shortage of coronavirus tests, and only frontline workers and patients sick enough to be hospitalized could get one. Watson called an advice nurse, who told her to assume she had the coronavirus and isolate for two weeks.

Most health guidelines at the time stated that “mild” cases of Covid-19 should only last around two weeks. But Watson’s illness lingered. So her doctor thought that having a fever for as long as she did—79 days, ultimately—was a sign she could have leukemia or lymphoma.
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Watson is among a growing number of coronavirus survivors who have found that a range of unsettling and seemingly inexplicable symptoms are persisting months after contracting Covid. In addition to fever, these symptoms have included a racing pulse, ongoing chest pain, chronic cough, dizziness, and mysterious tingling sensations.
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“It’s very difficult because no one really can say with certainty what will happen,” said Dr. Mady Hornig, an immunologist and professor of epidemiology at Columbia University, who is researching Covid-19’s connections to long-term conditions like myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS. She herself has also experienced some of these more “oddball symptoms” for over eight weeks, she told me. For patients and medical professionals alike, the uncertainty and lack of information about the disease can be “extremely frustrating.”
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https://newrepublic.com/article/158108/will-covid-symptoms-ever-end
 


Has a few quotes from Avi Nath, who is running the NIH intramural research program on ME. No word about funding but the mindset looks on track, Nath's basically saying this is a terrible opportunity but it is an opportunity that should be seized, that by the time ME patients typically interact with health care personnel there is no way of even knowing which pathogen was involved, let alone where it could be hiding.
 
Has a few quotes from Avi Nath, who is running the NIH intramural research program on ME.
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Every time I read about this study my thoughts go to Brian Walitt. The US poster boy for all things ME BPS related. I wonder what he's thinking. :D

Also, does anyone know if the US houses a blood bank of well people samples for research (sorry if I said that in a rather clumsy way) the way the UK has it's biobank? If you are going to study people who get lingering symptoms after covid then having markers from before being ill would be useful I would think.
 
German article: Some Covid-19 patients just don't get better https://krautreporter.de/3353-manch...url-35346-article-3353&utm_source=twitter.com
google translate:https://translate.google.com/transl...url-35346-article-3353&utm_source=twitter.com
Another group of patients, which has hardly been noticed by the public so far, feels more than familiar with this description: people suffering from Chronic Fatigue Syndrome. Many organ systems are also affected in them: the brain and nervous system, the immune system, the hormone system, the muscles and cell metabolism - especially energy production and oxygen supply.
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If the exhaustion and other symptoms persist for even longer than six months, this would indicate that there could be a chronic post-Covid Fatigue Syndrome in addition to the acute courses we have known so far. The post-viral chronic fatigue syndrome has been known as a disease for a long time. "We have known since a study in 2006 that after a serious infection a certain percentage of infected people develop a disease similar to chronic fatigue syndrome," Carmen Scheibenbogen told me on the phone. She is a hemato-oncologist and professor of clinical immunology at the Charité in Berlin and head of the immunodeficiency outpatient clinic. "I expect that Covid patients with such symptoms will also come to our outpatient clinic," she says, "We are worried that we will see more patients with chronic fatigue syndrome after Covid-19. But since Covid-19 is still so new, we can't say anything specific yet."

Translated with Deepl
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Sarah94 said:
Do we have any stats on what percentage of people who've had covid have now got ongoing symptoms?
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Early estimates I have seen was 1 in 20 but saw more recent ones at 1 in 10. Nothing reliable yet, it's especially hard given we don't even know the true number of actual cases. And that number likely includes other complications from lung or kidney damage, clots, etc.
 
rvallee said:
Early estimates I have seen was 1 in 20 but saw more recent ones at 1 in 10. Nothing reliable yet, it's especially hard given we don't even know the true number of actual cases. And that number likely includes other complications from lung or kidney damage, clots, etc.
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Oh fuck seriously?!

If you happen to remember the sources for those stats I'd be very grateful.
 
"Rehabilitation" advice coming from the RCGP is just as dreaded as anticipated, literally the BPS/PACE/MUS model:
After severe COVID-19 disease, many patients will experience a variety of problems with normal functioning and will require rehabilitation services to overcome these problems. The principles of and evidence on rehabilitation will allow an effective response. These include a simple screening process; use of a multi-disciplinary expert team; four evidence-based classes of intervention (exercise, practice, psychosocial support, and education particularly about self-management); and a range of tailored interventions for other problems. The large number of COVID-19 patients needing rehabilitation coupled with the backlog remaining from the crisis will challenge existing services. The principles underpinning vital service reconfigurations needed are discussed.
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https://www.rcpjournals.org/content/clinmedicine/early/2020/06/08/clinmed.2020-0353
https://www.rcpjournals.org/content/clinmedicine/early/2020/06/08/clinmed.2020-0353.full.pdf

The goal (outcome) To optimise a patient’s self-rated quality of life and degree of social integration through optimising independence in activities, minimising pain and distress, and optimising the ability to adapt and respond to changes in circumstances.
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Likely the IAPT psychometric questionnaire combo. Utterly useless and irrelevant to the illness itself. Though plenty are already desperate, so obviously the biased questionnaires will "reveal" a lot of "anxiety".
The process Rehabilitation is a problem-solving process, framed in the context of the holistic biopsychosocial model of illness, delivered in a person-centred way, and requiring:
> an expert, multi-disciplinary team, setting collaborative teambased goals
> a formulation of the situation, covering all domains of the biopsychosocial model
> close, collaborative working across all boundaries, professional, organisational and geographic
> ongoing monitoring of change and effects of interventions.

Interventions fall into five categories:
> General exercise that increases cardio-respiratory work
> Repeated practice of functional activities
> Psycho-social therapies
> Education with an emphasis upon self-management
> A set of specific actions tailored to the patient’s priorities, needs and goals, covering (if necessary) all domains of the biopsychosocial model of illness, and being evaluated regularly for their benefits and harms, to determine whether they should be continued, changed or abandoned.
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This will cause most post-viral illness patients to deteriorate significantly and likely cause suicides by way of medical gaslighting. Absolute disaster. The cited evidence seems very fragmented and arbitrary. I will eat my hat if this doesn't have Gerada and Wessely's hands on it. I do not own a hat so it's a safe bet but whatever.
 
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