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

Bit off topic, but this is the problem in a nutshell. It applies to longcovid as much as to us.

 

I don't think this has been posted?

https://www.theguardian.com/news/au...haul-why-are-some-patients-not-getting-better

 

I was thinking the same, but then again I rested a lot for 9 months (after viral onset) only to have a relapse within a month when returned to work. So it appears I felt well enough to return to work, but when I went back to normal activities, I relapsed and was worse the second time around. Wasn't pushing myself either.

 

https://twitter.com/user/status/1293481708017328133

https://twitter.com/user/status/1293314671840235521

https://twitter.com/user/status/1293494545364049921

 

https://twitter.com/user/status/1293449761153060864

https://twitter.com/user/status/1293511962668797954

 

This is a bizarre statement any way it's interpreted.

 

This is an NHS England document. Technically they are supposed to use the NICE guidelines for CFS/ME. The NICE criteria are very broad and only require symptoms to have lasted 4 months. I have seen no evidence that none would satisfy the NICE criteria.

 

The author is Sean O'Neill, who wrote several articles around the time of the DecodeME funding announcement.

 

What about other countries, have there been any official recommendations about what long haulers should do?

Nothing in Germany so far, but we didnt have many cases. Prof. Scheibenbogen from Charité in some interviews has warned about not pushing through post covid symptoms but that's it.

 

Nothing that I've seen so far in Canada. Mostly infectious disease doctors stating that post-Covid symptoms could last for months and result in autoimmune-type illnesses or long term health conditions.

 

In France, the minister of health, a neurologist, was interviewed on national TV last night. He stated that people seemed to be mostly affected by cardiac and neurological issues (and post-viral fatigue in a previous interview) and says that researchers are looking into dysautonomia. This is consistent with the recent publication from a French group of ID specialists. https://www.clinicalmicrobiologyandinfection.com/article/S1198-743X(20)30436-5/fulltext

Physical rehab/exercise therapy is being widely prescribed, in particular for PVF, with seemingly no warning (or knowledge?) about PEM. As usual it's based on the theory of deconditioning, even though some French long-haulers have been reporting that they experience PEM after minor tasks such as household chores.

It's honestly distressing to know that some of them will be pushed further into disability.

 

Yes it's like seeing your own tragedy being reenacted on public display and like in a nightmare patients are screaming but remain unheard.

It feels so surreal to me.

 

'A life sentence': The frightening trend emerging in young coronavirus patients

Nick Whigham
Yahoo News Australia13 August 2020
https://au.news.yahoo.com/frightening-trend-emerging-in-young-coronavirus-patients-092226298.html

https://twitter.com/user/status/1293890390148493312

 

Yeah that's not good. There was coverage on TF1 (last night I think) that ended saying they were using a vigorous training rehabilitation program. Awful. It also said no one had expected this post-viral illness, which is false. That's what happens when experts reject reality and substitute their own. Experts lie, people die.

https://twitter.com/user/status/1293809185969311745

 

https://www.youtube.com/watch?v=pTYsmXbUV9s

 

Covid-19 “long haulers” are organizing online to study themselves

https://www.technologyreview.com/20...rs-are-organizing-online-to-study-themselves/

Except it was actually warned and would have been known had it not been for stupid psychosomatic ideology maligning those with personal experience as delusional.

To think that the BPS ideology was riding on a "mission accomplished" high, unchallenged and unquestioned despite catastrophic failure. The entire system of medicine needs serious reform, treating patients as stakeholders and ending the immoral practice of rejecting reality and substituting their own.

Congratulations to the BPS brigade, you broke medicine. Again. Now it's time for actual experts to do the thing that you could never do: actual work.

 

This can be read on Twitter https://twitter.com/user/status/1293918411785777155

 

How can the NHS spokesperson already assert that it "will help people's recovery"? What evidence is there for that? The reference to "fatigue experts" is far from reassuring.

 

It really has been a long wait (25 years for me) for any attention to be paid to ME/CFS. Too bad that it has taken a deadly pandemic to force the NiH and the NIAID to look our way. I suspect Collins and Fauci are not happy about it. It's going to be interesting to see how long Covid plays out. More ME/CFS cartoons can be found at cfsgraphics.com