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

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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.
 
Tom Kindlon said:
The discussion here has prompted me to write this for what it is worth
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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.
 
Mij said:
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.
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I wasn't given that advice, but like most of us got the contrary advice, which I did follow and have paid the price for.

But I can't honestly say that if I had been given the sort of advice early on that you were given, that I would have believed or followed it, at least intially. I got sick at 20, just when for the average person your health peaks and you are getting into the swing of independent adult life. Very tough to accept that you have to scale it right back and even shut it all down for an indeterminate period, and possibly permanently.

I get why a lot of people – patients, their families, clinicians, researchers, etc – have trouble understanding why it is the right advice. It seems to go against everything we understand about the importance of remaining physically active, etc. Unfortunately ME seems the exception to the rule, or at least it comes with very serious caveats and limitations.
 
Esther12 said:
Also though, rapidly lumping ME/CFS with LC at a time when a lot of those with post-viral symptoms are going to recover is going to mean that many of these people will think of ME/CFS through their own personal recovery narratives. Amongst medical professionals who suffered from forms of LC, I expect that those whose views go on to have the most influence amongst their colleagues will be those who recover.
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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.
 
Sean said:
But I can't honestly say that if I had been given the sort of advice early on that you were given, that I would have believed or followed it, at least intially. I got sick at 20, just when for the average person your health peaks and you are getting into the swing of independent adult life. Very tough to accept that you have to scale it right back and even shut it all down for an indeterminate period, and possibly permanently.
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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.
 
Jonathan Edwards said:
I see this as unduly pessimistic.

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.
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But the problem is the pervasive influence those people have on Primary Care training and practice.
 
Snowdrop said:
IMO it is still very early days for any type of thinking on long-term sequelae due to covid and recovery.
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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.
 
leokitten said:
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.
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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.
 
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."
 
Snowdrop said:
But for people with covid it is as yet unknown whether their symptoms will resolve only to return.
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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"?
Some of those who fell ill in March last year are now closing in on a full year of illness and are wondering whether they will ever get back to the life they had before the pandemic. And these ultra-long-haulers have a warning for the rest of us: the effects of the virus might last far longer than anyone imagined.
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https://www.wired.co.uk/article/covid-19-long-haulers

 
Professor Brendan Delaney
article
Long Covid patients are told to exercise despite crippling fatigue
The official treatment for lasting fatigue, which is now recommended to long Covid patients, is graded exercise therapy

Professor Delaney, a specialist in medical informatics at Imperial College London, used to cycle 80 miles every Sunday, but after he developed long Covid — which is thought to have affected 60,000 people in the UK — even speaking to patients on the phone was a challenge. Sometimes he would feel better, but then he’d relapse.

Three months later, in June, when he’d been able to start working again (though only part-time), he still had brain fog.

The official treatment for lasting fatigue, which is now recommended to long Covid patients, is graded exercise therapy (GET). It involves doing a bit more exercise every day, with NHS website Your Covid Recovery suggesting: ‘It is important that you start being active as soon as possible after discharge from hospital . . . You should aim to build up to 30 minutes of activity at least five days a week.’

For people exhausted by a simple phone call, this seems like a huge task.

This regimen has been prescribed for patients with the long-term fatigue condition known as ME (myalgic encephalomyelitis) or CFS (chronic fatigue syndrome) for nearly 20 years.

However, when these patients complained they felt worse after exercise, they were told it was because they had a faulty belief that they couldn’t exercise. As a result, GET was often combined with cognitive behavioural therapy to rid them of this mistaken idea.
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https://www.tech-gate.org/usa/2021/...e-told-to-exercise-despite-crippling-fatigue/
 
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