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

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Columbia Magazine - How COVID-19 Could Reveal the Secrets of Chronic Fatigue Syndrome

Hornig is now undertaking several studies that aim to identify risk factors for ME/CFS among COVID-19 patients and to lay the groundwork for new prevention and treatment strategies. In collaboration with scientists at the LA-based research and advocacy organization Solve ME, for example, she is planning to follow large numbers of people who have recovered from COVID-19 to find out how many develop the syndrome and, hopefully, why.

“One of the interesting things we’ve seen so far is that some COVID-19 patients who initially seem to be on the path to developing ME/CFS actually start to feel better after four or five months,” she says. “We think that looking closely at these people and comparing them to others who eventually do get diagnosed with ME/CFS could yield valuable insights. Might there be something distinct about their immune systems that makes them more resilient? That could be the kind of discovery that opens up new possibilities for treatment.”
 
Trisha Greenhalgh, professor of primary care health sciences at the University of Oxford has been a powerhouse of covid-19 evidence synthesis. She pulled together advice on doing remote consultations, on wearing masks to prevent spread, and a host of other information.

She’s now turning her attention to “long-covid” - as we learn more about the disease, it’s becoming apparent that it’s not just an acute infection, patients are reporting chronic long term consequences of having the virus.
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On other patient forums I belong to (not many) I am seeing post-Covid people join the POTS one but not the ME one.

Guessing that partly it is possible that they are not getting ME dx because they have not been sick for long enough? Regardless of this I would think that they would be a little curious of ME.
 
ukxmrv said:
On other patient forums I belong to (not many) I am seeing post-Covid people join the POTS one but not the ME one.

Guessing that partly it is possible that they are not getting ME dx because they have not been sick for long enough? Regardless of this I would think that they would be a little curious of ME.
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I am seeing comments on Twitter where people with Long Covid seem absolutely desperate to reject and avoid a diagnosis of CFS or ME or any other similar diagnosis. I think the issue is that propaganda has been telling people for many years that people with ME aren't seriously ill, they are just lazy. But the people with Long Covid know that they are really ill not like those people with ME. (sarcasm)

I have zero belief that Long Covid sufferers will get any real help in the long-term, they'll eventually end up being left to rot, just as people with ME have been unjustly dismissed by many for decades. And of course, a lot of people with Long Covid never got positive tests, so that will mean they are more likely to be gaslighted and dismissed because the assumption will be made that they are attention-seeking hypochondriacs.

Title : These women's coronavirus symptoms never went away. Their doctors' willingness to help did.
Link : https://news.yahoo.com/gaslighted-dismissed-women-doctors-dont-191906843.html

And the British doctor's habit of turning everything into a mental illness is highlighted in neon lights in this article :

Title : 'Sheer fear': mental health impacts of Covid-19 come to fore
Link : https://www.theguardian.com/world/2...ental-health-impacts-of-covid-19-come-to-fore
 
ukxmrv said:
On other patient forums I belong to (not many) I am seeing post-Covid people join the POTS one but not the ME one.

Guessing that partly it is possible that they are not getting ME dx because they have not been sick for long enough? Regardless of this I would think that they would be a little curious of ME.
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Yeah, probably just the arbitrary 6 months. Plus we all know that the 6 months thing doesn't mean people get diagnosed after it, it just means when the GP drops them off to fend for themselves in most cases.
 
Arnie Pye said:
Title : 'Sheer fear': mental health impacts of Covid-19 come to fore
Link : https://www.theguardian.com/world/2...ental-health-impacts-of-covid-19-come-to-fore
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I never want to hear a physician whining against pseudoscience ever again. They are some of the worst peddlers out there, just very selective about only accepting one kind. Straight up astrology-level medieval nonsense.

They are training 3,000 practitioners for a need that does not exist all because they didn't want to spend a fraction of this on actually understanding the issue and preventing it in the first place. What a complete waste of human potential, compounded. They are not only wasting lives to this nonsense but wasting the entire system to prop up a stupid ideological death machine.
 
I haven’t been able to go through this entire thread, apologies if this has already been mentioned, but after reading so many articles and seeing so many news segments on this topic during COVID I’ve become really annoyed because not enough is being said that

There is no substantial difference between:

post-EBV syndrome
post-Lyme syndrome
post-SARS syndrome
post-Giardia syndrome
post-Ebola syndrome
post-COVID syndrome
post-<insert many different viruses or microbes> syndrome

they are all ME/CFS.

A significant percentage of people will get ME/CFS after many types of infection.

I know, there are some chronic symptoms specific to each initial infection, but the core, hallmark, most debilitating symptoms are the same, they are the hallmark symptoms of ME/CFS. In every single research paper or article I’ve read about the above post infectious syndromes, they describe the same overlapping core symptoms which are the hallmark symptoms of ME/CFS.

I believe the sooner the scientific community realizes this, instead of saying “chronic fatigue syndrome like”, the sooner we will get somewhere.
 
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ukxmrv said:
On other patient forums I belong to (not many) I am seeing post-Covid people join the POTS one but not the ME one.

Guessing that partly it is possible that they are not getting ME dx because they have not been sick for long enough? Regardless of this I would think that they would be a little curious of ME.
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Or many of them think ME is chronic fatigue syndrome and that chronic fatigue syndrome is just fatigue / being tired all the time. The point being that ME is those tired people which is not like long-covid at all. This thinking can be directly attributed to the psych cabal and their extremely vague 'science'.
 
leokitten said:
Regarding the thread title, what is the difference between ME and PVFS?

There is no difference.
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Time. That's it. It allows to nonsensically argue that PVFS is temporary, since it just gets a new name after an arbitrary threshold. No one has PVFS longer than 6 months. That's certainly true. They just call it something else afterward and tell the patients to get lost, unable to report harm, allowing to argue no evidence of harm.

Maybe there are distinctions, but that would take research and research on this topic is not allowed, allowing for the "mystery" to persist, actually arguing that it's too mysterious to research because the lack of research keeps it "mysterious". Good old dystopian nightmare.
 
I'm not at all sure that I agree with these views about PVFS. I'm not sure what the first use was but the conference in 1978 attended by all the "ME" experts was said to be about PVFS. Behan referred to PVFS. The Jenkins/Mowbray book from 1991 was primarily called PVFS. The terms were interchangeable. The doubts about encephalitis were recognised. Acheson, the probable originator of the term ME, said in the Forward to the 1990 book that he preferred PVFS.
 
rvallee said:
Time. That's it. It allows to nonsensically argue that PVFS is temporary, since it just gets a new name after an arbitrary threshold. No one has PVFS longer than 6 months. That's certainly true. They just call it something else afterward and tell the patients to get lost, unable to report harm, allowing to argue no evidence of harm.

Maybe there are distinctions, but that would take research and research on this topic is not allowed, allowing for the "mystery" to persist, actually arguing that it's too mysterious to research because the lack of research keeps it "mysterious". Good old dystopian nightmare.
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It’s insane to me that most in the scientific community, with full knowledge of how little we know about the immune system, cannot make this fairly simple mental leap:

There is a percentage who recover fairly quickly after the acute infectious illness.

There is a percentage who don’t recover and have ME/CFS + infectious-specific symptoms, are labeled post-infectious syndrome, and eventually recover up to a year or so after the infection.

There is a percentage who don’t ever recover, have ME/CFS + infectious-specific symptoms for a period of time, and have ME/CFS symptoms indefinitely.

If they can wrap their heads around people not recovering right away and having ME/CFS symptoms for up to a year but eventually recovering, how can they not wrap their heads around a percentage of people not ever recovering?

While I’ve made three groups for making this point, in reality it’s way more of a spectrum, but that fact makes the point even stronger.
 
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