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

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Yep, only time will tell.

I felt pretty much recovered from PVFS after 9 months, but quickly had a relapse once I started working and doing normal activities. I didn't experience PEM until 6-7 years later when I started exercising again.
 
https://www.bloomberg.com/news/newsletters/2020-08-29/when-covid-won-t-go-away

When Covid Won’t Go Away
In the nine months since the coronavirus emerged, the global medical community has learned about how to detect the virus, restrict its spread and better treat patients. Lately, scientists are also confronting a glaring blind spot in their knowledge: thousands of Covid-19 patients who report that months later they haven't recovered in full.
Mysterious lingering symptoms after viral infections aren't new. Patients recovering from other viruses, including Ebola and the coronaviruses SARS and MERS, have also reported a wide range of continuing health problems, including neurologic issues. And then there's chronic fatigue syndrome, also called myalgic encephalomyelitis, a mysterious and debilitating condition linked to numerous viral infections.

“It's the minority of people — depending on the illness, from 5% to 20% — who have some kind of persistent problem. They never quite get over it,” says Mitchell Elkind, a professor of neurology and epidemiology at Columbia University.

Now Covid-19 patients are reporting similar problems. Some of the most common issues involve the nervous system, including everything from memory and sleep disturbances to dizziness, nerve pain and “brain fog.” Scientists are just starting to study those “long-haul” patients, so it's not clear what is causing their symptoms or how long they will last. But even if a small minority of Covid patients face lingering cognitive problems, “that can be a massive societal and economic burden a year from now,” says Adrian Owen, a neuroscientist at Western University in Canada.

In the past, post-viral syndromes have often gotten limited research attention, or, in the case of chronic fatigue syndrome, proved hard to study given the long interval between viral infections and reported symptoms. The enormous number of coronavirus patients with lasting neurological symptoms may finally change that. It's prompting numerous studies just getting underway that may give doctors and patients badly needed answers to why some people can't seem to recover from Covid-19.—Emma Court and Robert Langreth
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My bolding
 
It seems possible to develop PVFS with nearly asymptomatic cases:



I suspect that many pwME who do not have a clear infectious trigger probably fall in that camp, of either having been asymptomatic or having had low-level symptoms that were so unremarkable as to never have been noted, even in patients' own history. Especially so when trying to work this out years after they happened.

If health care were mature and efficient, every single case of infection, of any nature, would at least have a record, using standard tests and follow-ups on symptoms progression with long-term outcomes. It's absurd that we still basically treat infections as non-issues unless they cause massive acute problems. Going in completely blind, willfully no less, on such a massive problem is foolish to the extreme.

And no wonder medicine is clueless about the kinds of symptoms that get a patient sent home to recover. They never see those problems, never gain experience on them, never see course progression, never take note of various patterns and fluctuations.

A radically different approach to public health is needed, this thing where we wait for problems to grow out of control is an obvious disaster.
 
rvallee said:
It seems possible to develop PVFS with nearly asymptomatic cases:



I suspect that many pwME who do not have a clear infectious trigger probably fall in that camp, of either having been asymptomatic or having had low-level symptoms that were so unremarkable as to never have been noted, even in patients' own history. Especially so when trying to work this out years after they happened.

If health care were mature and efficient, every single case of infection, of any nature, would at least have a record, using standard tests and follow-ups on symptoms progression with long-term outcomes. It's absurd that we still basically treat infections as non-issues unless they cause massive acute problems. Going in completely blind, willfully no less, on such a massive problem is foolish to the extreme.

And no wonder medicine is clueless about the kinds of symptoms that get a patient sent home to recover. They never see those problems, never gain experience on them, never see course progression, never take note of various patterns and fluctuations.

A radically different approach to public health is needed, this thing where we wait for problems to grow out of control is an obvious disaster.
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Another issue is that many people who have developed ME/CFS symptoms in the last six months may put them down to COVID-19 when it could have another cause (though Covid-19 antibodies do increase the chances the cause is Covid-19). Lots of people may misattribute what causes their illness e.g. lots of families attribute ME/CFS symptoms to HPV vaccines while the attribution in many/most/all cases may be inaccurate.
 
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Forbes - Are Long-Term Coronavirus Complications Considered Disabilities Under the ADA?
by employment lawyer Tom Spiggle

Extreme fatigue is one of the most common long-term complications from a coronavirus infection and its symptoms seem to mimic encephalomyelitis/chronic fatigue syndrome (ME/CFS). According to the Centers for Disease Control and Prevention (CDC), ME/CFS is severe fatigue that does not improve with rest and can worsen after any form of physical or mental activity. There is a proposed billin Congress to promote research into ME/CFS and how it may relate to coronavirus survivors.

These long-term complications affect not just the health of coronavirus survivors, but also their ability to work. So this begs the question: could the lasting effects of the coronavirus constitute a legally recognized disability? Yes, and this article will discuss how.
 
Kalliope said:
Forbes - Are Long-Term Coronavirus Complications Considered Disabilities Under the ADA?
by employment lawyer Tom Spiggle

Extreme fatigue is one of the most common long-term complications from a coronavirus infection and its symptoms seem to mimic encephalomyelitis/chronic fatigue syndrome (ME/CFS). According to the Centers for Disease Control and Prevention (CDC), ME/CFS is severe fatigue that does not improve with rest and can worsen after any form of physical or mental activity. There is a proposed billin Congress to promote research into ME/CFS and how it may relate to coronavirus survivors.

These long-term complications affect not just the health of coronavirus survivors, but also their ability to work. So this begs the question: could the lasting effects of the coronavirus constitute a legally recognized disability? Yes, and this article will discuss how.
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And imagine all the people that got COVID but couldn’t get a positive test, for the various reasons described in the news, yet they had had illness and symptoms?

They’ll end up just like most of PwME, who got ME/CFS outside of any outbreak, and didn’t know what the terrible flu/viral infection illness was in the beginning and simply thought it was just a very bad type of flu that would pass. I waited for it to go away and after 2 months finally went to doctors. I told them all the symptoms and that my heart was doing crazy things that I could feel. They found I was having cardiac arrhythmias and also very high EBV and HHV-6 IgG and EA-D titers (but not IgM), but of course the doctors simply said it looked like a past infection and the PVCs I was having can happen with healthy people, but the cardiologist admitted that it’s surprising that I could feel all of them as healthy people don’t notice they are having them.

These people will have such a hard time getting any help from the government or disability, as those with ME have struggled.
 
Trish said:
I think PVFS is used to include variations on post viral illness that is self limiting and usually recovered within a year or so and doesn't necessarily include PEM? Maybe. Not sure.
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I didn't quite get the distinction until I was in Australia, and there the distinction was pretty clear. But they use it exactly as Trish says--even if it lasts six months or a year and it ends, post-viral fatigue syndrome is the term--it's just a very, very long process of what is a few weeks for most people. What is being called ME but what in Australia is generally referred to as "chronic fatigue" was a different entity. People would grumble if someone on a panel talked about getting better with exercise at the 9 month or one year mark and would say they had PVFS and not "chronic fatigue" (ie ME).
 
leokitten said:
Regarding the thread title, what is the difference between ME and PVFS?

There is no difference.
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I think I titled the thread. I agree that there probably isn't a difference. My thinking was that the PVFS covered the period up to 6 months, and also it covered the bases for those people who think there is a difference.

Having a family where three of us got ME/CFS at the same time after a viral infection and one of us got better within 2 years and two of us are still sick 7 years later leaves me pretty convinced ME and PVFS are different names for the same thing.
 
Sean said:
Yeah, I don't think we are the point where reliable distinctions can be drawn between ME, PVFS, CFS, Post-COVID, etc.

Or even know if there are any.

We just don't know.
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This. Because too few have been interested enough to even try to have a look. Plus different people use the terms differently, to ensure maximum confusion.
These are some of the interpretations I've come across and can recall at the top of my head; there are likely to be others. No idea which one if any is right.
  • PVFS is simply the name up until 6 months and then it gets a new name, ME, but it's all the same thing.
  • PVFS can last from a few months to about 2 years - some say up to 5 years - and then you recover. It's not ME.
  • PVFS is an early form of ME. If you fail to recover from PVFS within 3 years something in your body changes and you tip over into ME you won't recover.
  • PVFS is different from ME in that there is no PEM with it, instead there's a more constant, less fluctuating heavy exhaustion and other symptoms.
 
Mowbray renamed ME as Post Viral Fatigue Syndrome which took over with alarming rapidity. Ramsay's publishers refused to publish his book unless he called it PVFS which was the correct name for the disease.

At the time, viruses were considered to often have a long term recovery which was referred to as a post viral syndrome so PVS and PVFS were completely different.

The confusion of names is used against us and what we are told we have does not necessarily have any relation to what is going on in our bodies. There is no evidence that someone who has a post viral syndrome and recovers after a few years ever had the same as someone who goes on to get ME. The people with long covid are already getting the "feeling fine then all symptoms recur" that is more typical than the constant fatigue of PVS.

Lyme disease is caused by a bacteria and giardia by an amoeba so it is not very likely they would lead to the same disease as a virus. It is just as possible that being debilitated by them would let a virus get in that causes ME.

I believe if there comes a test it will show up very quickly if someone has ME.

What we think of as an infection is mostly the response of the immune system - the fever, runny nose and so on. A virus which is evading the immune system to get deep into the body will seem like a milder disease.
 
Ravn said:
These are some of the interpretations I've come across and can recall at the top of my head; there are likely to be others.
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Worth remembering that PVFS and ME are different types of diagnosis, whether or not they can be applied to the same person.

PVFS is a diagnosis that implies a cause, ME is not. Medicine is full of terms of both sorts that are both useful in different situations.
 
chrisb said:
I agree that PVFS does seem to imply a cause, but this interpretation was rejected by the BPSists, who said that it merely indicated correlation. People had had a virus, and now they had fatigue.
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OK, it implies a prior history. That still makes it a different sort of diagnosis. Moreover, if the viral illness is not thought to be causal there does not seem much point in mentioning it! I thought the BPS people had it as part of the bio-. Their pseudometaphysical arguments about minds, bodies and causes don't have to be swallowed.
 
chrisb said:
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.
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Somewhere along the line PVS changed to PVFS. My old medical notes start with PVS and then ME. This is around 1987ish.

There is no mention of PV'F'S and when I saw this term used later I felt that the inclusion of fatigue was odd as my symptoms were still bouts of what felt like the initial virus attack.

Years later I heard that the 'F' part was included due to the intervention of an official body but I don't know if true.
 
ukxmrv said:
Somewhere along the line PVS changed to PVFS. My old medical notes start with PVS and then ME. This is around 1987ish.

There is no mention of PV'F'S and when I saw this term used later I felt that the inclusion of fatigue was odd as my symptoms were still bouts of what felt like the initial virus attack.

Years later I heard that the 'F' part was included due to the intervention of an official body but I don't know if true.
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Same here, I got what was called ME or PVS in 1983. I never heard the term PVFS until much later, maybe about 1990, and the change from PVS to PVFS baffled me because when I got ill, it was understood that the condition was a prolonging of viral-type symptoms, eg feeling very ill and flu-like, dizzy, 'hungover', 'poisoned', etc. Fatigue didn't even come into it. Then suddenly a few years later, the usage of 'fatigue' appeared, first in addition to the original symptoms and then gradually becoming the only necessary symptom.

I do remember something about Dr Ramsay being pressured to add 'fatigue' to his ME symptom list somewhere in the late 1980s; his original definition did not include fatigue, just a specific characteristic type of muscle fatiguability. But in about 1990, a different version of his definition now had fatigue at the top of the symptom list. I, too, can not remember, or maybe didn't know at the time, where that pressure came from.
 
Mithriel said:
Lyme disease is caused by a bacteria and giardia by an amoeba so it is not very likely they would lead to the same disease as a virus. It is just as possible that being debilitated by them would let a virus get in that causes ME.
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I used to think the illness after an infection that wasn’t viral would be quite a bit different to one after a virus. Then I read papers on post-giardia from Norway such as one Leonard Jason co-authored and was surprised how ME-like the descriptions were.
 
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