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

interesting to hear from Hungarian doctors and their take on Long Covid, so thank you for making a summary. I understand you're not very impressed, though..

 

Canada's 'long-haulers' without family doctor need primary care: medical association

https://www.ctvnews.ca/health/coron...ed-primary-care-medical-association-1.5318564


I'm not sure which way to take this but I don't think it's meant in a good way:

Really not looking like medicine is up to the task here. The dysfunction is just too much.

And, no, primary care is not an option in Canada, with or without money, not without a massive paradigm shift that acknowledges decades of failure. I technically have a primary care physician. She is the one who made me aware of CFS, what it's called here. She diagnosed me with CFS. She is of no help whatsoever beyond that and I haven't bothered making an appointment in 3 years, literally no point. The services are not accessible and fully fragmented. My father has had to do all the work in the end, primary care is a dead-end for chronic illness.

Lack of a primary care physician is a problem in the Canadian health care system. It is not however the solution here, even those of us who technically have access to a GP are completely shut out of the system. By design.

 

https://twitter.com/user/status/1364138276819529730

 

NIH: NIH launches new initiative to study "Long Covid"

NIH: Open funding opportunities

 

The best spin I can put on this is that Collins' tweet was aimed specifically at people with Long Covid and he didn't want to "complicate" things by introducing the subject of ME/CFS. In the United States you have to assume that the average person has never heard of "ME / myalgic encephalomyelitis" and that the small percentage that has heard of "CFS / chronic fatigue syndrome" are, for the most part, likely to still think of it as psychosomatic (thanks to nearly 40 years of (not always so) benign neglect by the CDC).

If this was the intention, it seems to have failed - as virtually all of the comments on this tweet are from people asking why he didn't mention ME/CFS.


The worst spin I can put on it would be that those in charge would prefer to not to bring up ME/CFS just now because that would naturally lead to questions like, "You've known about this since at least 1984? What have you been doing about it?"

"Uh, well, we, uh, did some first class research into morning cortisol levels and, uh, childhood sexual abuse - and we've been spending about $5 million a year on it... well, only since 2012.. but still..."

 

https://www.gets.govt.nz/MOH/ExternalTenderDetails.htm?id=23802052

I'm having some very mixed feelings here. Nice to see the Ministry of Health showing some interest in long Covid. But but but.

We've had what, something like 2000-2500 people directly affected by Covid in NZ of whom a few hundred unfortunates may end up with long Covid. And they get a longitudinal study? As an immediate priority no less. While the "the short and long term impacts for people with confirmed or probable" ME remain of no interest whatsoever, never mind there are at least ten times as many of us and that we've been waiting for decades.

Mind you, I rather suspect the poor long Covid folks are just going to be given a few questionnaires asking about their levels of anxiety. I hope they get better treatment than that but I wouldn't want to bet on it.

 

Video interviews (in Swedish) with a Swedish doctor who has long covid. She's answering questions from readers about post viral syndromes, facts and unknowns, dysautonomia, POTS, and the connection to ME, among other things.

Experten svarar på dina frågor om långtidscovid
https://www.expressen.se/tv/nyheter...lisa-noren-svarar-pa-fragor-om-langtidscovid/

Dina frågor om långtidscovid – med Lisa Norén
https://www.expressen.se/tv/nyheter/dina-fragor/dina-fragor-om-langtidscovid-med-lisa-noren/

(I haven't watched them myself yet, but they have been getting positive comments from some of my pwME friends).

 

What does Dr Pope do of the recent studies on Long Covid showing that some of the most prevalent symptoms of LC are those of ME, including post-exertional malaise?

At this point it seems pretty clear that Long Covid is getting recognized and funded while being thoroughly distanced from ME. Those who are operating this distancing don't mind gaslighting us using the same language as the BPS/MUS crew ("harassment"), even though pwME have been providing support to pwLC from the get-go. It's nauseating.

We will be left to pick up little bits of positive things that come for LC, but even that will take advocacy. And I suspect it will take work to undo "LC isn't ME".

 

We found out pretty early in this that Rachel Pope was firmly against acknowledging any sort of link between ME and a portion of LC sufferers, so largely she is best ignored. Yes, it's sad and infuriating that someone with her views is, apparently, influential in the UK LC world but she's no worse than any other sort of ME denier and denigrater, so we'll just need to carry on as normal.

 

Sometimes I think medicine is etch-a-sketch art. You can create whatever picture suites you at any given moment, then erase and start over with an altogether different picture.

If history stands for anything, I suspect that is what will happen with LC. Once the pandemic is truly in the rear view mirror, medicine at large will relegate LC to ME/CFS and chronic Lyme status.

Acknowledging LC "forever" would open too many unanswered questions about the latter two.

 

I believe she listened in on the call and could ask questions, possibly as a patient representative, but I'm uncertain that she has a much of an influence on political deciders.

I have been telling myself the same, but there is a notable difference as a result of the pandemic: LC seems too widespread to be neglected. A significant amount of money has been allocated to Covid research including longitudinal studies, which may protect LC from being relegated to fringe status. That being said, the world -- health systems first and foremost -- will be happy to move on from Covid once the pandemic settles (i.e. herd immunity through vaccination and vanishing hospitalization numbers).

 

So no one is expecting the line, worldwide, of 'we've spent billions researching it (something else we made up) but we found nothing of interest, that would help us explain, or treat it. So, according to all our evidence, it doesn't exist. Have you tried being yelled at by a drill sergeant and being forced to exercise 23 hours a day - that might help but if not we have nothing else to offer, go away, stop annoying us and get back to work.'

Coz I is.

ETA - sorry if I'm not particularly upbeat - still suffering from the fire door fiasco, and PEM can make me a tad negative.

 

I think there is still scope for it to get better (though of course that doesn't mean it actually will). There appears to be more than one type of Long Covid, e.g., with and without organ damage, with and without persistent viral infection, and these groups still need to be described properly through good quality research.

It's not this that frustrates me, it's the fact that there does appear to be an ME/CFS-like cohort and too few people are seeing it as an opportunity to help both groups.

Well, except the BPS tribe, that is, who clearly recognised it as such immediately.

 

I give it a year before the Long-covid clinics start to close or are absorbed into IAPT MUS services.

 

If they avoid any mention when it counts, I don't see how they would not avoid working the issue entirely during the entire research program. This is what lack of courage looks like. No leadership to be found, as is tradition in medicine. The denial is clearly strongly motivated, it's not an oversight.

Some of it is bound to help no matter what, but if there is an explicit avoidance of the issue it will be very little and it will also hurt long haulers, as by numbers this is what most of them have (or related co-morbidities anyway). The main issue is of wasting most of that funding and using it as the ultimate sledgehammer to say "we tried spending a fortune, it's impossible to solve, now go away forever".

So far so very bad, frankly. Turns out the massive incompetence and dysfunction seen in EBM is basically universal throughout the entire profession. Ugh. We are in the worst possible hands.

 

She is still stuck on the "ME is fatigue and nothing else", sadly. Hard to compare to something with a fully distorted picture of it.

 

Well, not just incompetence and dysfunction. I'd add greed and legacy concerns and govt interests and laziness and corruption.

 

I expect so – one of my first ever email addresses included 'adminsitrator' because that's how I typed it half the time!