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

As the revised NICE guidelines are not going to be published for some time yet
The U.S. ME / CFS Clinician Coalition
NEW GUIDELINES FOR DIAGNOSING AND TREATING ME / CFS
from Sept 2019 (in 6 different languages) is available here:

https://www.omf.ngo/2019/09/01/new-guidelines-for-diagnosing-and-treating-me-cfs/

 

Rejecting a cause and there not being a cause are very different things. But if Garner meant the clinical criteria then that's correct, and thus why AHRQ and NIH rejected the horrible Oxford criteria. It's not a valid definition, a point advocates have always made clearly.

The cause has been rejected for decades. That's not our fault, we objected to that. Blame the jerks who fabricated CFS with that misleading definition. ME has always been defined correctly in that regard, more or less. It's not a complete picture but an infectious trigger has always been a primary suspected cause, it was always a matter of "well, why can't we find the virus then?". Because they're freaking hard to find, is why.

 

More reports of people who thought they were recovered, had a few good weeks and relapsed.

Of course that's not universal but this is smack in the middle of the entire issue of what recovery means, how to assess it, how someone may think they have recovered, that gets marked as a success, only to relapse soon after but this relapse never gets recorded anywhere.

Reports of this are rather sparse but there are enough to be confident it represents a sizable % of cases. And why the entire paradigm of CBT-GET is flawed beyond repair, ignoring symptoms is the worst possible advice to give.

 

The penultimate paragraph was interesting and hopeful. The last one was thoroughly relatable"

"Until now, much of the response to covid-19 has been about preventing deaths, but hospitals are beginning to establish clinics to follow-up the survivors - including those who are still ill. "I'm certainly hoping that if folks like us can work out some of the biological mechanisms of this disease, there will be therapeutic ways of getting around it," says Altmann.

For Wall, this won't come a moment too soon. "My life has changed so dramatically. I don't know how to adjust to this. I don't know that I want to. I just want my life back.""

 

I just wanted to say, So sorry, and Big hug

 

Yes, I seem to have TATT on my medical records for a while (at least a few months but it might have been longer) before I was told there was a suspicion of CFS.

 

So say we all.

 

Can Covid Damage the Brain?
https://www.nytimes.com/2020/06/26/opinion/coronavirus-brain-damage-dementia.html?action=click&module=Opinion&pgtype=Homepage

Somehow this article does not mention ME/CFS at all despite quoting Mady Hornig.

No bueno

 

https://twitter.com/user/status/1276693183414579201


Maybe someone on Twitter could @ her to point out she missed ME/CFS

Also here

http://melindawennermoyer.com/

 

Yes, Prof Garner seems to have been on a journey of understanding in the last few weeks. It’s a shame the NS didn’t quote his latest BMJ in which he said, “Health services are largely institutionally prejudiced against people with chronic fatigue and ME and in some cases these attitudes are framing the service response to Covid-19”.

There is also a leading article in this week’s edition of the New Scientist:




For those who can’t access it online here are some more quotes from the feature article:

I was interested in this bit about gut dysbiosis:

 

From a quote in @Robert 1973 'post above

Let's not forget the upheaval when a sudden illness that everyone assumes is temporary turns into a prolonged struggle that completely buggers up your life affecting your career, finances, relationships etc.

That's a massive stress right there just when you are least able to deal with it. It comes with a whopping side order of judgemental criticism from colleagues, friends and the medical profession just when you need support the most.

All because they assume a short term illness when we already knew 50+ years ago that some viral illnesses have very prolonged recovery where the patient should be allowed to rest.

 

Risk of never fully recovering after coronavirus ‘very real,’ scientists say

https://globalnews.ca/news/7111094/coronavirus-scientists-health-problems/

 

I'm concerned for those post COVID patients who will be offered a flu-shot when flu season starts in the fall. This might be the second 'hit' that ends any hope for their recovery.

 

Getting the flu with COVID might be worse than the flu-shot. Too many unknowns.

 

The Conversation June 24th - What doctors know about lingering symptoms of coronavirus by prof William Petri

The article discusses several serious symptoms. Interesting that it's only in connection with post-infection fatigue prof Petri believes mental health intervention to COVID-19 survivors will likely be important..

While again it may be too early to tell, in the case of the original SARS outbreak almost half of survivors interviewed more than three years after recovery complained of fatigue.

The Centers for Disease Control and Prevention criteria for diagnosis of the chronic fatigue syndrome were met in a quarter of COVID-19 patients. It will likely be important to target mental health interventions to COVID-19 survivors to help them deal with a prolonged convalescence characterized by fatigue.

The article was reposted today by ScienceAlert

 

I've added the following comment (pending approval) below Paul Garner's BMJ blog:

'Professor Garner writes: "Health services are largely institutionally prejudiced against people with chronic fatigue and ME, and in some cases these attitudes are framing the service response to covid-19".

In an article published in the BMJ in 1988 Anthony David, Simon Wessely and Anthony Pelosi wrote: "we believe that understanding of the postviral fatigue syndrome has been hindered by doctors who suffer from the condition also researching it. Though medical training affords insight into the subjective effects of illness, it is axiomatic that objectivity is not similarly enhanced." (https://www.bmj.com/content/296/6623/696)

In a subsequent letter to the BMJ the same authors wrote: "Research done by sufferers from postviral fatigue syndrome is a delicate issue about which we thought deeply before expressing an opinion. Reviews by Parish' and others are valuable, but clinical research should be carried out by those without the inevitable, albeit unconscious, biases caused by suffering from this condition. Dr Hughson's comparison with Percival Pott is misleading. Pott did not have to consider the complexities of mind-body interaction when contemplating his fractured tibia." (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2545791/pdf/bmj00284-0059d.pdf)

Dr Wessely went on to write numerous papers on post-viral fatigue and ME/CFS. NHS services for people with ME/CFS largely reflect his view that illness is perpetuated by unhelpful illness beliefs and de-conditioning which can be reversed by CBT and GET. This view was rejected by the US Centres for Disease Control and Prevention in 2017 (see: https://www.virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/).'


https://twitter.com/user/status/1277022973506064384