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

What does COVID-19 portend for ME/CFS?
Mady Hornig, MA, MD
Columbia University Mailman School of Public Health
New York, NY
https://solvecfs.org/wp-content/uploads/2020/04/COVID19-MECFS_Sci_Review.pdf
https://twitter.com/user/status/1253024623484166145

 

ME & Post-COVID-19


One person's perspective. It is something to keep in mind with advocacy.

At the same time, I think one also needs to look at positives so that one gets a true and balanced perspective on what is the best way forward. Getting extra sums of money for research (which could be substantial) could be very useful.

 

https://twitter.com/user/status/1253077323810652160

 

MD Björn Bragée (who is a bit controversial ME doctor) has written an opinion piece in a Swedish medical news site where he gives some historical examples of ME in the aftermath of previous epidemics and advice doctors to keep an eye out for ME during this new epidemic.

ME/CFS kan öka dramatiskt efter pandemin
google translation: ME/CFS can increase dramatically after the pandemic

 

from tweet posted above

"the worst thing to do is to tell them to rest" : Simon Wessely

https://www.s4me.info/threads/gover...lishing-the-bps-model.2319/page-4#post-256305

 

Covid-19 and Post-viral Fatigue Syndrome by Dr Charles Shepherd | 30 April 2020

https://www.meassociation.org.uk/20...yndrome-by-dr-charles-shepherd-30-april-2020/

 

article in topdoctors by
Dr Gerald Coakley
Published: 29/04/2020

https://www.topdoctors.co.uk/medical-articles/post-viral-fatigue-and-covid-19

eta see later post on this thread https://www.s4me.info/threads/possi...ovid-19-long-covid.14074/page-133#post-302423

 

https://www.fatigueclinic.co.uk/gerald-coakley

(There is duplication on the page) I wonder what he is like.

 

https://web.archive.org/web/20160616151514/http://vitality360.co.uk/about-us/

 

I've seen worse advice, at least he seems relatively aware of the research. But the last bit about going to see a GP and fatigue clinics is a bad sign. If he doesn't understand the NHS guidelines and the fatigue clinics are useless, I'm not sure what else he misunderstands. Given the post above showing they do CBT and GET at this clinic, I would imagine it's about 8.5 of the whole 9 yards.

Better than average so there's that. 1/3 would be freaking enormous, though. It would essentially change our whole civilization if a high % of people get infected and that many develop significant post-viral chronic illness. I'm not sure people quite understand the implications of that, especially as the most at risk are by far essential workers and, especially, medical personnel.

 

Recovering from COVID-19 / Can Coronavirus cause Post Viral Fatigue?
video on youtube by someone who has had Covid-19; talks a lot about CFS citing various research papers; mostly the ones re cytokines, inflamation etc. But top of his Scholarly list is
Wessely et al, 1989: https://www.ncbi.nlm.nih.gov/pmc/arti...

He also briefly talks about current treatment or lack of. He had PVF after gladular fever some time ago and recovered after a year.

Code:

https://www.youtube.com/watch?v=1MHlum4AOlY

 

Article in the Guardian:

https://www.theguardian.com/world/2...to-coronavirus-recovery-long-lasting-symptoms

 

Guardian continuing strong with their lazy poorly-researched ME coverage. As is tradition. Looks like they offloaded that part to the SMC, who left it to the new KCL CFS-MUS unit.

No idea why someone taught it reasonable to quote Pariante as an expert on the topic and this is the first I've heard of Gill and his timeless advice to, checks notes, drink water and breathe. Thanks, doc, I'm totally cured. Nobody would have ever thought of doing that.

 

First post I have seen so far on the COVID19Positive subreddit containing PVFS advice and, fortunately, comes from a good source:



I wonder how it will go when people start to notice the behavioral nonsense and how freakishly weird and inappropriate it is. Especially as we're already seeing the inevitable "LP for COVID PVFS" grift.

 

The Telegraph: Coronavirus could cause secondary illnesses including chronic fatigue syndrome, experts warn

“Research about how the virus impacts the brain is in its infancy,” Professor Sir Simon Wessely, former President of the Royal College of Psychiatrist, told The Telegraph.

“We don’t know whether Sars-Cov-2 does or does not [cause CFS/ME]. But we need to set up cohort studies of those infected by this agent as soon as possible, and follow people up for the short, medium and long term.”

 

It's amazing he can breathe or swallow, his neck appears to be made almost entirely of brass.

(https://dictionary.cambridge.org/dictionary/english/brass-neck - for those not familar with the expression)

 

As health care personnel are particularly vulnerable for the corona virus and Covid-19, I do hope they and their colleagues will be able to distinguish between PVFS and burnout should they still struggle after the infection is over. This text by Gerada made me a bit worried.

BMJ: Understanding burnout by Clare Gerada

Looking back, I had classic burnout. Burnout is formally defined as a state of physical, emotional, and mental exhaustion caused by long term involvement in demanding situations. For me it conjures up an image of “destroyed” individuals, shells of their former selves, damaged by the “fire” of their work that rages around them.
...

The covid-19 crisis is putting additional pressure on doctors and the health system in general. An Ipsos MORI poll has reported that half of workers already believe that their mental health has declined in the first two months of the crisis, and if covid-19 has even the same psychological impact as other major pandemics a vast number of key workers will need support.

 

He's the one bringing up the brain. This isn't about what the virus does to the brain, no one is bringing that up other than psychosomatic fanatics like him. He just can't help make it about himself and what interests him. It may play a role, but there's nothing at all indicating that it is particularly significant until we actually do the work and he's already anchoring it where his personal interests lie, double entendre very much deliberate.

Anyway I thought he "retired" so why would his opinion even be asked on a topic he loudly "retired" from nearly 20 years ago and thus is not up-to-date on?

And there's no point in doing that with people like Wessely at the helm, it will be incompetent and biased to the hilt. We need competent work by real scientists who value science and are able to hold their personal urges in check.

 

Looks like gaslighting begins at home in this family. Hell, it even begins within the self.

That's just sad.

 

different take in Sunday Telegraph
https://www.pressreader.com/uk/the-sunday-telegraph/20200503/281801401124550