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

wasn't that originally what was thought to be happening in ME patients? (before bPS takeover).

Recently the media have been (irresponsably IMO) hailing dexamethazone (corticosteroid) as an effective treatment for some covid patients.
https://www.who.int/news-room/detai...-in-treating-critically-ill-covid-19-patients

 

That what I find a little surprising, too. Some articles/doctors make it sound like post viral problems are unheard of and the wheel needs to be all reinvented..

Also, the article talks about it being either dysautonomia OR "chronic fatigue syndrome". There from what I understand can be a huge overlap.

 

I can’t access but saw these tweets:
https://twitter.com/user/status/1278780282817187846

https://twitter.com/user/status/1278781928469155845

https://twitter.com/user/status/1278781929735827459

 

where is the number of "up to 10% of people with some viruses can develop ME/CFS" Ron Davis is mentioning coming from?

That sounds a little high.

 

It's what a variety of research papers found. The percentage can be even higher for some viruses.

 

Oh, I was only thinking about Herpes viruses...but right, with Sars1 it was pretty high.

 

I posted an article earlier on dysautonomia somewhere but can't find it.

One theory is that the inflammation triggered by COVID-19 damages the autonomic nervous system, which affects functions we don't consciously think about, such as digestion, sweating, sleep, heart rate and blood pressure.

Dr. Mitchell Miglis, a neurologist at Stanford University, ascribes to this theory. He said it appears that for some people, "the body is still damaged" even when the virus is long gone.

"It can take a really long time to fully recover," he said, adding that it's too soon to know whether the condition will clear up eventually or whether the symptoms will continue as a chronic disease.

 

Given all the money thrown at COVID itself, surely they can spare some money to investigate the role of the autonomic system in such patients?

I'm not convinced this is the problem, but it isn't exactly hard to investigate.

 

Possible. Could be the same person and I didn't pay attention to the name. Memory is too hazy.

 

Oh for sure it happens in some cases, it's just not the cause of physiological deterioration and mixing two unrelated things together only makes it harder to resolve either.

 

I’m not convinced it’s the problem either. I think dysautonomia is just one of the symptoms, and possibly not even the most disabling one that stops people from being able to function as before. Eg people with “just” PoTS and sweating and bladder issues etc, look very very different to those with ME and PoTS (possibly all severities of ME but definitely for severe patients). But I do hope it’s researched as it seems it could be connected in some way.

 

There has been a lot of speculation that the respiratory distress, other than in cases of genuine ARDS, is not caused by lung damage but rather by dysfunction of the brain area (brain stem I think here?) so I think this will have a serious look.

Also so much tachycardia that can't be denied and is not explained by proper myocarditis or other heart-related issue. Well, hopefully, at least unless some myth about anxiety manages to choke this in the bud. It has worked for several decades on millions of people, after all.

 

Full article can now be read for free here:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7322483/

 

Every lie we tell incurs a debt to the truth. Sooner or later that debt is paid.

 

https://twitter.com/user/status/1279155358666305541

 

https://twitter.com/user/status/1279104339911553029


https://twitter.com/user/status/1279110029916987392

 

Question

"misguided division between the objective physical realm, which is construed as real and legitimate, and the realm of subjective experience, which is construed as invalid or derivative."

If the subjective experience is considered invalid why are so many BPS studies based on subjective reporting?!

Surely this is having one's cake and eating it?!

 

https://twitter.com/user/status/1279136190432776193


She's received quite a few responses mentioning ME/CFS

 

I browse a subreddit frequented by long-covid sufferers (r/covid19positive), and every so often, someone makes a post about how, after X months, they’ve fully recovered. The post often ends by claiming everyone else WILL recover in time too, so just hang in there, etc.

It seems when an illness is neglected/poorly understood by medicine, people feel free to think of their experience as universally generalizable. Contrast this with “serious” diseases where people are aware there’s a range of experience—reinforced through knowledge of its most severe form—and so are more cautious.

Something similar happens in the CFS subreddit with its relatively less-informed user base and it makes me feel like I don’t belong there. I bet some long-covid sufferers are feeling something similar. It sucks.

 

I agree some feel that just because an experience is true for them it is true for all.

I spent a fair amount of time hanging out with cancer patients years back. I was well enough for a regularish yoga practise and my local instructor had a lot of links into local cancer groups. I was often struck by the list of things that many (not all) attributed to their survival/recovery including their own strength of character, supplements of choice, lifestyle changes of choice, alternative medicine of choice. Very little mention of the ££££££ in research, surgeons, specialist nurses etc.

Not only did they dictate what each other should be doing they extrapolated that to everyone else.... "Well, it cured me of cancer so, you know, if it cures cancer it is bound to be good for...."

Very alienating for those whose treatment isn't going well or those with conditions that haven't benefited from vast, well spent research funds.

I think it's a superiority born out of a need to re establish a sense of control. It is very toxic to other people though.