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

[Shinygleamy]

I don't have the brain power right now to make sense, especially in twitter condensed form. If anyone has the cognitive bandwidth to explain why leaving out decades of history by separating from it is not going to work out:



The article is framed explicitly to separate long Covid from PVFS/CFS. Very explicitly, and doesn't argue much else, only providing a brand new starting point. I understand the reasons and they are rational, ME/CFS/PVFS has been completely failed by medicine, in the worst possible way, but only without the context in which they exist.

If the point is that those terms are inappropriate, and they are, then the point should be made, not left unvoiced. But that's not the point. The point is we are too discriminated to associate with and, again, I perfectly understand the reasons and do not fault anyone, since they can't possibly have a good enough understanding of ME to know it is wrong. But this approach is like trying to put out massive wildfires while not only not taking into account but explicitly distancing from the impacts of climate change. There may be seemingly persuasive reasons to do that but it will fail.

Or treating a new type of cancer as wholly separate from other cancers. Probably more accurate. There are clear differences but far more similarities.

In truth, to make significant progress here requires not only working with the decades of context, but medicine basically has to solve the immune system and all its pathogenic consequences, especially symptoms. Medicine is currently completely unequipped for this. It requires a massive upheaval of decades of wooification that caused blatant rejection of the very possibility that pathogens can do what they do. This isn't anything that can be separated from.

Again, this would have been possible had COVID left an unmistakable trace in the body. It likely would have happened, actually. But unless and until this difference is found, we are in the same pit of hell, a place where separating people into rooms doesn't really change anything because the thermostat on the wall is fake and the temperature is the same everywhere.

There is definitly one reason covid long haulers shouldn't shun m.e. folks. If they want to get a head start on research and understanding of the condition you would look to M.E. data/knowledge. That alone is something we have that many will not turn their backs on.

 

[ukxmrv]

I think people need to be careful not to too harshly criticize people that have long covid, or that are talking about long covid. I think that the vast majority of them are well intentioned, and if people either politely raise points or correct things I think almost all of them will listen. But if they feel like people with ME are being combative, or unnecessarily pushy or harsh, it's likely they'll be more reluctant to engage with people with ME or the possible link between ME and Long Covid. This is just something people need to be careful about.

It may be that being seen as pushy or negative in the short term is a better strategy for the long term. We have always had this problem with some new 'ordinary' ME patients.

We need to keep telling the truth regardless of how the Long Covid people feel about it and us.

 

[Trish]

We need to keep telling the truth regardless of how the Long Covid people feel about it and us.

We can tell the truth about what ME is, in terms of definition and symptoms. What we can't do is tell individuals whether what they have is ME.

 

[Dolphin]

Perhaps the most helpful response to tweets that dismiss ME as 'just fatigue' is to wish the person a full recovery, say we hope their long Covid doesn't develop into ME, and attach links to good quality materials about ME. It is then up to them whether they choose to educate themselves about ME.

That would seem to suggest none of them have ME now while many are displaying ME-type symptoms.

Anyway, my main concern are the leaders within the LongCovid community.

 

[Dolphin]

Dr Elisa Perego is the lead author of the BMJ piece and pre-print. The reason she is giving for avoiding terms like ME, CFS, post viral syndrome and similar is she doesn’t want labels and everyone should be investigated individually. However I’m not sure she has problems with other medical labels. And to some extent some sort of labels are required in medicine and research.

If one looks at her Twitter feed with replies she spends a lot of time challenging people with ME/CFS. She is replying to them first in most cases.

 

[chrisb]

I think perhaps we can agree with SW about one thing. It may be unhelpful for doctors to pontificate on their own illnesses. Especially if they are not doctors of medicine.

 

[rvallee]

 

[Mithriel]

I decided to write to them and ask could I share their original message which they have now agreed to:

Somebody sent me the following
--
"The many tweets and posts about post-covid have made me wonder about something. Back in 1988, when I first heard about ME (and had already been having it for 2 years), ME was also sometimes referred to as Post Viral Syndrome. Likewise, doctors are now calling post-covid a postviral syndrome.

Most long-time patients are probably weary of changing the ME name yet again, but I wonder if it wouldn't strengthen our case, especially in the medical community, if we referred to our illness as PVS/ME from now on, and to post-covid as PVS/COVID19 (or PVS/SARS2), to emphasize that we're in much the same boat, and hopefully bend some of the attention that is being paid to post-covid towards post-viral syndromes in general."
--
They have now given me permission to share it without their name, adding:
"I don't know anything about the methodology of how the medical community assigns names to illnesses, but even if the idea should break with their conventions, I hope people will still consider if this could be beneficial to our plight as patients. Thanks!"

My comment: I wonder whether reversing the order, so it becomes ME/PVS, might be a bit more suitable as it is comparable to ME/CFS. And then similarly it would be COVID19/PVS



They gave me permission to re-phrase the idea, but I decided for this post, I would use their original wording

When Mowbray renamed ME as Post Viral Fatigue Syndrome it was a deliberate statement that there was no virus left in the body when that possibility had not been determined scientifically. It was strange since he was the one who was using the VP1 test to show enteroviral particles in the brain among other places.

It became official almost overnight but there was no internet then so I never found out why that happened. I suspect that it was the first step towards the BPS downgrading to CFS as they could fit a long gone infection into their theories but not a continuing one.

Virus living quite happily in parts of the body where the immune system does not reach happens in enteroviral myocarditis and it makes evolutionary sense that a virus could find a niche inside the body if the immune system misses it at first.

I am not saying it happens, but it is possible so using post viral is not good as it is not settled.

 

[duncan]

it makes evolutionary sense that a virus could find a niche inside the body if the immune system misses it at first.

Plenty of precedent for this, I suspect. Although not viruses, spirochetes are notoriously adept at making the immune system think they are not there. So it's not as if our immune systems always get it right.

Diagnostics don't always help. Testing brings in the overtly human arrogant blunder aspect, which exponentially opens us up to calamity. Whereas diagnostics leave clinicians warm and soft all over, some should come with surgeon general warnings for the patients.

 

[chrisb]

I don't wish to be contrary, but I am not sure what the evidence is that Mowbray was responsible for the name PVFS. I know he wrote a book with Jenkins in 1991, but the use of the term goes back to at least 1978 with the conference or symposium, and was generally used by Behan in the early 1980's. It is not even entirely clear to me that the term was intended to indicate that the virus had gone. It may simply have meant that there had been a viral infection, leaving open the question of whether or not it was still present.

 

[Tom Kindlon]

Dr Frayling, who donated his plasma to a facility in Bristol to help find new ways of treating the infection, took part in a teleconference with the World Health Organisation (WHO) to share his experiences of long Covid.

 

[chrisb]

That's good. I interpret that as meaning that he recognises that there are cycllcal and constant varieties of CFS and that he has the cyclical form. It seems unlikely that he would mean that his condition is like CFS except for the cyclical nature of his illness,

This intervention is to be welcomed. We wish him well.

 

[Tom Kindlon]

 

[Tom Kindlon]

Not an example of ME/CFS-type symptoms post Covid so perhaps more suitable on another thread?

 

[Kitty]

I interpret that as meaning that he recognises that there are cycllcal and constant varieties of CFS and that he has the cyclical form. It seems unlikely that he would mean that his condition is like CFS except for the cyclical nature of his illness,

I find this worrying, though:

"When I'm good I can do anything I want," he said.

"I can walk for miles across the Dales no problem. But within days I can completely collapse. It took me nearly all of September to get back to where I am now."

Many years ago, long before my diagnosis, I was able to go hiking. I always had PEM afterwards, sometimes with a significant delay, so it looked like some kind of cyclical illness.

It wasn't. It was bog-standard mild ME, and the PEM may have seemed more delayed than it is now because it took time to aggregate enough activity to trigger a full-blown immune response. I understood that I might feel after-effects following something I classified as 'exercise', but as I was undiagnosed, I'd no idea that everyday, non-strenuous activity could add a huge amount to the meter that's always running in ME patients.

I really hope he doesn't suffer the same fate as me, and hike himself into a massive crash that, as well as making him acutely ill for months, reduces his function level by 50% for years afterwards.


ETA: Changed 'actually' to 'acutely' (flipping auto-correct!)

 

[Mij]

Has anyone sent them a link to Mark VanNess's video regarding PEM where he shares a story about a marathoner with ME who was able to continue running, and after six months came back for more testing to learn that it made her worse?

 

[chrisb]

I find this worrying, though:

"When I'm good I can do anything I want," he said.

That is just as I was, probably. That is the cyclical form. I was never back to 100 % but I was able to go long walks or caving and feel well enough to think that recovery was just around the corner, but the relapse always came to put me back in bed for two or three days. I must have recovered eight times a year for ten or eleven years. It becomes a bit wearing. That is why I believe entirely that he has what I had.

 

[rvallee]

From a lung health foundation in the Netherlands. It could be that many of those can attribute their symptoms to pneumonia. I still don't understand the obsession with getting even people who were borderline athletes just a few months ago to exercise, as if they not only "deconditioned" (nevermind that they displayed the same symptoms within days or weeks) but also forgot how to exercise. This exercise-as-panacea is extremely foolish and unprofessional, so much anchoring to concepts and just never letting them go.

And of course since there's never been prompt and thorough examination of ME patients short-term, we have no idea if this could be the case for some of us. I had at least 3 cases of bronchitis in my 20s. Never got checked, actually got an allergic reaction to an antibiotic. So much damage caused by the strong belief that testing plays a role in enabling the illness.


Longfonds: “Worrying picture of the long-term consequences of COVID-19”

https://coronalongplein.nl/informatie/longfonds-worrying-picture-long-term-consequences-covid-19

The vast majority (86 percent) of the people who participated in the study report that they are still fatigued 165 days after the first symptoms. Almost 6 in 10 (59 percent) are still short of breath, and the COVID-19 patients still suffer from chest tightness (36 percent) and headache (35 percent). It is striking that the percentage of people who indicate that they have muscle pain (40 percent) has increased slightly.

The vast majority of respondents (94 percent) were not hospitalized because of corona. They had so-called "mild COVID-19". These are relatively young patients: the average age was 48 years. By far the largest group (86 percent) said their health was good before the corona infection. More than 6 in 10 (61 percent) had no underlying disease.

 

[Robert 1973]

 

[chrisb]

All we need is more rapoor.