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

It starting to look like calling ME/CFS "A Canary In A Coal Mine" was sadly even more prophetic than could have been imagined.

 

I wonder, though, whether the unfortunate possibility of a rash of new cases developing among respected medical professionals will actually benefit the ME cause in the medium term?

The difficulty for existing 'reliable witnesses' within the medical profession (putting aside the politics of why a serious illness should even need reliable witnesses) is that having ME grinds them down. Few can carry on working full-time, and if they lose touch with roles, institutions, conferences, and publications, they fade rapidly from view. They may join the group of Poor Old Whatsisnames; the former colleagues with promising careers, who succumbed to anything from mental breakdown or alcoholism to premature death.

However, if a group of doctors, academics and researchers is affected within a few months, the collective impact of their voices is amplified enormously. They're unlikely to be silenced and ignored, and some of them will find their way to our community. We need to be ready not only to support those who do arrive in our spaces as scared, struggling individuals, but also to leverage their influence.

 

What happens in 3 months time? "Oh you've been under/ overactive ( RCGP advice), now you need GET."

Backed up with media articles by Sharp.

Surely NICE needs to make a clear statement on GET?

Also becoming anxious/ depressed is a NORMAL reaction to a massive life change.

 

Is it worthwhile providing post COVID cohort with links to virtual conferences past and present ?

 

https://www.edinburghnews.scotsman....-three-months-after-covid-19-collapse-2884714

 

The naivete shown in the assumption that GPs would like to support 'us' - when 30 years of evidence strongly suggests that they have absolutely no interest in doing so, in any way, medically or otherwise, is 'delightful' in it's lack of appreciation of the scope of the problem..

 

https://www.forbes.com/sites/lipiro...ction-the-prolonged-onslaught-of-coronavirus/

 

It is also similar to post-infectious EBV (without ME). There are several pro tennis players who have never regained their athletic abilities after contracting EBV.

 

Mono is quite common among tennis players, some recover while others don't. This could be key to better understanding the pathophysiology of ME.

 

The pleas for help from physicians have begun:

https://twitter.com/user/status/1274321467279388673


Well, Gardner was the first to speak out about it but this is more of a cry for help than relating the experience.

Not surprising: the demands are the same. How odd.

 

Not Just An Acute Infection: The Prolonged Onslaught Of Coronavirus

https://www.forbes.com/sites/lipiroy/2020/06/19/not-just-an-acute-infection-the-prolonged-onslaught-of-coronavirus/

 

I don't remember seeing this one posted yet, probably because of the paywall but signing in allows me to read it. Guy was a picture of healthy fitness. It's pretty good. COVID-19 is like a gattling gun firing wrenches into the MUS/FND machine. Holy crap are these people unmatched for the scope of what's happening.

The comments are especially interesting. Many good ones. Some terrible ones. One especially weird basically dismissing everything on the basis of the Royal Free outbreak and how it proved it's mass hysteria because women. Someone is actually making that argument seriously. Impressive.

‘I had the coronavirus months ago but I’m still too ill to work... or even watch TV’

https://www.thetimes.co.uk/past-six...ll-too-ill-to-work-or-even-watch-tv-d6cc3vgtb

Has the yoga teacher tried yoga to cure her unhelpful beliefs? Yogis are known for their pessimistic outlook on life.

 

It's odd for me when I read about 'long term' post COVID patients (3 months) after having ME for almost 30 years.

 

Me, too. I empathize, 3 months is a lot for an otherwise healthy person. It's nothing for the chronically ill.

I still think most of them will resolve though. It's known from othet viruses, e.g. EBV, that post viral fatigue can last for up to 6 months or so.

 

Thought this N=1 experiment was interesting. Anecdote of course but consistent and interesting comments below. Includes at least one comment from someone saying they felt back to normal for about a month and relapsed.

What I'm seeing is that there seems to be a threshold past which a return to normal is achieved. Until that point there may be improvement but too much exertion before that point leads to a tightening of whatever is causing the illness.

 

https://twitter.com/user/status/1274415645833048065

 

I'm trying to get a picture of the various post-X syndromes and can't find a source that made the effort to list them or research commonalities, differences, features. There are basically a dozen or so post-infectious syndromes, somehow all unrelated and having nothing to do with one another in such a way that it's apparently preposterous to suggest there is such a thing a post-infectious illness.

From https://me-pedia.org/wiki/Postviral_fatigue_syndrome#Viruses I get:

• Cocksackieviruses[2][8]
• Cytomegalovirus[8][9]
• Dengue viruses[12]
• Ebola can cause a post-Ebola syndrome which has similarities[13]
• Epstein-Barr virus[2][8][14][9]
• Enteroviruses[2][8]
• Human herpesvirus 6, 7[9] and other herpes viruses[8]
• Influenza viruses[8]
• Parovirus B19[9]
• Ross River virus[14]
• SARS-CoV, the coronavirus that causes SARS[15]
• Varicella zoster virus, which causes Chickenpox[2]

​

I guess that's one to add to the list. I can't see a reason not to add the Lyme and Q fever as well. It's so damn obvious it's incredible that Occam's razor was dismissed so thoroughly for years in favor of Rube Goldberg's blunt mace of bluntness, the equivalent of "ghosts, I guess, why do you even want a label anyway?"

And seeing so many accounts of "I've had post-viral fatigue and this is something way more severe" leads me to think the entire CFS-ME debate is largely (there can still be various other causes leading to the same) a matter of spectrum, perhaps not triggering the mechanism that causes PEM, the distinguishing feature that should mean "rest or you are in for a world of hurt".