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

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!

 

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.

 

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/

 

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.

 

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

 

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.

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:

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

 

article:
Will My Covid Symptoms Ever End?

https://newrepublic.com/article/158108/will-covid-symptoms-ever-end

 

https://twitter.com/user/status/1270649435069059084


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.

 

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.

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.

 

Do we have any stats on what percentage of people who've had covid have now got ongoing symptoms?

 

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

 

https://www.washingtonpost.com/health/2020/06/11/coronavirus-chronic/?arc404=true

These people have been sick with coronavirus for more than 60 days.

 

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.

 

Yes, tens of millions of cases is definitely rare. Barely more than a handful.

 

here is a quote about Nath:

 

Oh fuck seriously?!

If you happen to remember the sources for those stats I'd be very grateful.

 

I saw a few, they are rough estimates, nothing reliable so haven't bookmarked them. Just a rough figure.

 

"Rehabilitation" advice coming from the RCGP is just as dreaded as anticipated, literally the BPS/PACE/MUS model:

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

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".

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.