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

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://twitter.com/user/status/1299602412718747648

 

https://www.bloomberg.com/news/newsletters/2020-08-29/when-covid-won-t-go-away

My bolding

 

It seems possible to develop PVFS with nearly asymptomatic cases:

https://twitter.com/user/status/1299395049684439042


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.

 

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.

 

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.

 

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.

 

https://twitter.com/user/status/1299789650169671681


partially about “long Covid” aka ME/CFS

 

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).

 

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.

 

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.

 

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.

 

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.

 

exactly which is one of the reasons I was so furious when my medical notes which showed a clear progression ie, virus, pneumonia, PVFS, ME were changed to CFS.

 

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.

 

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.

 

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.