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

[Sly Saint]

Patients have a dormant reservoir of virus in the body that periodically gets reactivated; traces of the virus in tissues are triggering inflammatory symptoms; or the immune response goes into overdrive and mistakenly starts attacking the body’s own cells

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

The benefit was only seen in patients seriously ill with COVID-19, and was not observed in patients with milder disease.

 

[Leila]

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.

 

[Dolphin]

Three Months In, These Patients Are Still Ravaged by Covid’s Fallout
Doctors are studying coronavirus patients who are still experiencing symptoms or aftereffects of the disease, months after infection

A good article and I like they include pictures of patients, it makes them less anynomous.

They mention ME and dysautonomia but also a guided exercise programme, that made me cringe.

"Akiko Iwasaki, professor of immunobiology at Yale, believes there are three potential explanations for long-term symptoms:

Patients have a dormant reservoir of virus in the body that periodically gets reactivated; traces of the virus in tissues are triggering inflammatory symptoms; or the immune response goes into overdrive and mistakenly starts attacking the body’s own cells."

I can’t access but saw these tweets:

 

[Leila]

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.

 

[Hoopoe]

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.

 

[Leila]

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.

 

[Mij]

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 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.

 

[Snow Leopard]

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.

 

[rvallee]

I remember an MP saying she had POTS and that affected her ability to queue for something to do at parliament. So perhaps that is what you're thinking of?

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

 

[rvallee]

Based on nothing at all? You ask people who've spent a considerable amount of time in ICU (I know two recent cases) and they'll probably tell you that it was pretty hellish, especially if they had to be intubated, and that they're suffering from some form of PTSD.

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.

 

[lunarainbows]

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

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.

 

[rvallee]

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.

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.

 

[Dolphin]

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:

View attachment 11332


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:

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

 

[rvallee]

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

Garner says his symptoms are the same as chronic fatigue syndrome, with one difference – CFS is defined as not having a cause.

I've had lots of contact with people who are really destroyed by this. They never expected it to be a long-term chronic problem.

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

 

[mango]

 

[mango]

 

[JellyBabyKid]

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?!

 

[Kalliope]

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

 

[jonathan_h]

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.

 

[Invisible Woman]

It seems when an illness is neglected/poorly understood by medicine, people feel license to treat their experience as True. Contrast this with “serious” diseases where people are aware there’s a range of severity—reinforced through knowledge of its worst manifestation—and so feel rightfully cautious about generalizing.

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.