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

0.5% . Sounds familiar

 

(Australia)

https://www1.racgp.org.au/newsgp/clinical/gps-and-hospitals-to-tackle-long-covid-together

No mention of chronic fatigue syndrome, or ME specifically, but there was this:

I don't recall any mention of exercise from my quick skim.

 

Strange how there is no clear reference to PVFS/ME/CFS. It seems to be an implied undercurrent. There seems to be a deliberate return to the policy from around 1990. Don't give the diagnosis. We don't want to frighten the horses. Or to confirm them in their beliefs.

 

https://www.irishtimes.com/life-and...-everything-that-is-me-away-from-me-1.4343793

This comment was posted underneath

 

From doctors as patients: a manifesto for tackling persisting symptoms of covid-19

https://www.bmj.com/content/370/bmj.m3565

Further down it cites "no decision without me" yet doesn't even include the patients here... ugh. We are excluded from society, so it doesn't include us.

But. Many diseases aren't studied. In fact it's precisely why something that has been happening constantly for decades is "taking medicine by surprise". That's literally the problem here: not all diseases are equal and some are fully discriminated against. The regular way of doing things is what broke here. Medicine has explicitly refused to do this despite consistent demands and clear evidence for decades. As a choice. We have been begging for this and it's constantly rejected with prejudice. Again: as a choice. People chose this and imposed this choice on us. Blame them, your colleagues, they deserve the hell out of it.

This is completely incompatible with the BPS/FND/MUS thing that has captured medicine over the last few decades. So incompatible in fact that only one of those things is possible. As long as this ideology remains, none of this will happen. This is why it did not happen over the last few decades and we are stuck in this situation where medicine is constantly "surprised" by things that happen every single day.

NICE did not caution against GET. It fact they issued a statement afterward emphasizing that. It merely said it should not be assumed GET would be used. It currently is, as we knew it would. And NICE can't recommend against GET for COVID-19 while keeping it for ME so they can't do that yet, too much escalation of commitment, too many egos and careers to protect.

Hi. We need to talk. Like, right fucking now. You speak of lessons. What lessons? Medicine is still in the business of maligning chronic illnesses and lying about us, not learning a damn thing by ignoring everything we say and trampling over explicit rejection of consent. There are no such lessons learned, in fact we are in the era of maximum failure on this regard. The lesson NEEDS to be learned but, again, too much escalation of commitment and egos and careers and so on. Ask the patients. Hell, we left a long public record, one that is completely ignored and dismissed with prejudice. One that you yourselves would have dismissed had you not been caught in this dystopian nightmare with the rest of us.

This is a nice sentiment and is basically exactly what the ME community has been begging for decades. But it is incredibly naive of the current context that leads to medicine, again, being "surprised" every time by something that has been happening every day for decades. It completely ignores the context of BPS/MUS/FND that makes this plan a non-starter without a massive reform of medicine that has to acknowledge massive widespread failure that destroyed millions of lives, knowingly, on purely ideological grounds.

This is a good recipe for solving this but the system can't do this right now. Not without massive changes. Not without recognizing that for all those good ideas, every last one of them, medicine is currently incapable of delivering and in fact has refused to do so aggressively for decades. Because medicine doesn't do that "no decision without us" thing. It's not a thing. It's how it should work, but the opposite of how it works right now. What this describes is what gets people discharged for being "non-compliant".

Context matters. There is huge context behind this, all of it is not acknowledged, let alone taken into consideration. That the obvious precedent of ME/CFS and other chronic illnesses isn't even acknowledged here does not inspire confidence, especially on the question of "lessons learned". Medicine doesn't learn lessons from patients, stubbornly so. The patients can tell you that, but they weren't even included in the list of stakeholders. Everything has to change. Literally everything.

This article is discussed further here:
BMJ letter from LongCovid doctors.

 

https://twitter.com/user/status/1305907085490761729

https://twitter.com/user/status/1305938140742455298

 

This could be the nail in the coffin for those BPS folk. Before it was a few pesky patients, afraid of a bit of exercise, now it could be thousands of people, many of whom work in healthcare.

 

https://twitter.com/user/status/1305768537823346689

While I remember, I thought I would highlight this tweet by one of the co-authors:
https://twitter.com/user/status/1292186331330891776

 

Dr Pope's response is worrying, as we can't know whether or not Long Covid shares features with ME until the underlying processes have been elucidated. Doctors developing firm opinions without any solid evidence is the last thing patients need.

 

I shouldn't worry about Rachel Pope. She is not a medical doctor. She's a "prehistorian" - even if she does have trouble spelling the word.

 

Well, she is going to be a co-author of a paper. She was also interviewed on LBC recently. So she may be influential.

Another co-author is @elisaperego78 who is often posting on Twitter criticising what people with ME/CFS are posting about long Covid. I get the impression she also wants to keep long Covid away from ME/CFS. She spoke at a meeting with the WHO in the last few days.

 

I'll warn you now... Most of the comments I've read on this video are vile.

Coronavirus UK: What is 'long Covid'?

https://www.youtube.com/watch?v=8hn4dlyMl2A

 

More long COVID on Cuomo Prime Time two nights ago. Dad and 9 yo son are still sick for 6 months now. Watch son’s description of his symptoms...

https://twitter.com/user/status/1305696803174531073

 

https://twitter.com/user/status/1306229199687032834

 

Treatment advice from Sweden's Occupational Therapists, based on the British Royal College of Occupational Therapists' advice.

 

https://twitter.com/user/status/1306242097117360129

 

Hi @Tom Kindlon I would go further and say “no effective treatment exists”, because tweet implies there might be a non-curative but effective treatment for ME, which there isn’t.

I don’t care if ME researchers and clinicians discover I have to take 20 different pills and injections a day for the rest of my life to significantly improve my symptoms so I can be a functioning member of society again, I would sign up for that in a heartbeat.

 

OK, I’ve replied to my tweet which many will also see
https://twitter.com/user/status/1306247537674907650