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

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."

 

It's a danger, but don't think we will get the full pictures for a long time. I and three friends, for instance, 'recovered' to over 85% of previous function for years at a time before relapse. The trigger illnesses were hepatitis, gastroenteritis, EBV, and possible EBV.

Had a doctor been interested, it would have taken them seven years to find out I was going to have a remission, another four to discover that I would relapse, and a further three to know that I would have another remission. So in total, 14 years before a pattern becomes apparent.

Is anybody going to do that study now?

 

My bolding. I wonder what 40 years ill would be described as if less than a year is "ultra-long-haul"?

https://www.wired.co.uk/article/covid-19-long-haulers

https://twitter.com/user/status/1351141585258483726

 

Professor Brendan Delaney
article
Long Covid patients are told to exercise despite crippling fatigue

https://www.tech-gate.org/usa/2021/...e-told-to-exercise-despite-crippling-fatigue/