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

By the same logic, it would seem like we shouldn't link Epstein Barr Virus or other infections with ME/CFS.

Separating ME/CFS from infectious onset seems a very risky road to go down as it makes biopsychosocial/psychological theories more likely to be posited, it would seem. Nor does it seem a good way to progress the science.

 

Yeah, definitely. There's no way that LC patients should be told anything like that they'll be sick for their entire life.

I'm not saying it should be clearly and permanently separated, but that we should be cautious about anything implying that, for example, the sorts of response to ill health patients who've been ill for a couple of years find helpful is also likely to be helpful for those who've recently started struggling with post-viral symptoms. Even for those who've been ill for a longer time seem to have quite varied experiences so advice can often be problematic, and I expect that this problem is even greater for those more recently ill. Particularly with LC, where we know even less than with other post-viral symptoms.

 

For me the issue is about forcing a distinction, forcing a distinct label and entity, and the consequences when it comes to research funding. All PVFSs have similar recovery distributions.

It’s not being dishonest to LC suffers to say to them the syndrome many of them have is yet another clinical presentation of PVFS, that there is a distribution of recovery time and percentage of people who recover and who don’t, and that all PVFSs known to date and ME/CFS share all the same primary symptoms, there is no magical “conversion” to a distinct ME/CFS disease at some timepoint it’s just a percentage of people don’t recover.

 

I remember being told by a support group in 1992 when I had been ill for a year and relapsed, that I would eventually become disabled. I honestly thought they were fanatics and started distancing myself from them. I did not believe them. My ME doc heavily advised to not exercise but I didn't listen. That was the most important advice I was given.

 

I remember fervently believing that I would get well.

 

The discussion here has prompted me to write this for what it is worth
https://twitter.com/user/status/1350906867216740353


Edited to add:
As it seemed quite popular on Twitter, I posted a similar message to my Facebook page:
https://www.facebook.com/TomKindlonMECFS

 

Totally, the same as why, like a roll of the dice, some people get really sick or die from COVID without any comorbities or age-related factors while others are totally asymptomatic or have a very mild illness course. They would be fooling themselves to believe it was because of something they did that saved them. We just do not understand enough about the immune system and interplay with viruses to make any sense of this yet.

 

IMO it is still very early days for any type of thinking on long-term sequelae due to covid and recovery.

It would be interesting to find out how many pwME have experienced relapsing and remitting of symptoms. I know I have and the time between was often measured in years.

It's possible that this could be the experience of some with LC. Only time will tell.

 

@Tom Kindlon well done. Do you have any study with data on this phenomenon? I think I base my view on studies that I've read years back but cannot recall any details and suspect that in the literature there might not be any paper that contains a picture of this recovery curve (rather the information is spread out over multiple studies that examine patients at varying points in time). It would be nice to have a paper on this showing with a picture the different course postinfectious symptoms can take.

 

I have edited my ‘lived experience’ on twitter too now

https://twitter.com/user/status/1343511162370064384

 

https://twitter.com/user/status/1350221773816688650

 

I see this as unduly pessimistic.

I remember having post-viral fatigue after EBV that lasted about 6 months. It wasn't such a big deal - I just could not do any sport or weekend activities. At some point I suddenly felt fine. But fir the rest of my life I have understood that what I had was real and so I totally accept that longer term ME is real.

There will be some who go for a BPS explanation of their own illness buts to be honest I think they will be limited to the touchy-feely people in primary care and health care research 'academia' who seem to regard mind-body interaction as a religion. There may be quite a few of them but the great majority of doctors I know would I think take the view I do if they had had Long Covid. It sounds pretty disabling for many - probably a lot worse than what I had.

 

I was given the advice without any explanation as to why it was important, and there wasn't internet back then to research it. The term PEM only came into existence around the year 2000. I was so happy that I became well enough to start exercising again that I don't think anything would have stopped me. The delayed PEM was bizarre, but I always recovered after a few days. I didn't understand that it would make me worse off over time.

 

Why do we think SARS-Cov-2 and long COVID are going to be any different than SARS, MERS, swine flu, bird flu, Ebola, Herpesviruses, Giardia, Q fever, Ross river, Enteroviruses, and the other documented intracellular pathogens that always seem to trigger PIFS and ME/CFS in a significant minority of people.

SARS-Cov-2 isn’t an alien virus, it’s new, though history doesn’t seem to have many, or any, examples where similar intracellular pathogens don’t seem to cause a distribution of PIFS cases and ME/CFS. I know this could turn out wrong but even just historical evidence is pretty glaring.

 

Got a different name innit.

So it must be different, stands to reason

 

My comment was about remitting and relapsing. I have no idea if all these viral infections cause R & R'ing type of post illness. I know nothing about them. But for people with covid it is as yet unknown whether their symptoms will resolve only to return.

Perhaps I didn't word this well.

 

It’s likely me, sorry I misunderstood the context possibly in relation to another post you referred to. My comments were also a more general observation.

 

Belfast Telegraph - Sunday Life - Long Covid could claim up to 700 doctors in Northern Ireland

According to the latest official statistics, 93,834 people in Northern Ireland have tested positive for Covid-19 since the beginning of the pandemic.

This means upwards of 9,000 people here are living with long term effects of the virus, including debilitating breathlessness, chronic fatigue, headaches, chest pain and brain fog.

Dr Black (right) said he is aware of an increasing number of young doctors who are suffering from the effects of long Covid and that young females appear to be more susceptible.

"We will inevitably lose a significant proportion of the health care workforce at the end of this pandemic due to long Covid and due to the physical and psychological burden," he said.

"We are hearing of young doctors, who are otherwise fit or healthy, who have been off work due to Covid and go back after six or eight weeks and then having to leave after an hour or so due to chest pain.

"We have doctors off on long-term sick leave because of long Covid and ultimately we believe we may lose anywhere up to 15% of doctors from the workforce in Northern Ireland by the time this is all over."