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

I don't know who to tell this to but this needs all alarms blaring red, fast and LOUD. People will get hurt by this. People will likely die by this. It's an absolute disaster.

Maybe I read it wrong. But it looks like the worst possible thing anyone could have come up with.

 

Continuing with the RCGP document:

Psychosocial medicine is on the way:

 

Perhaps someone can tweet this to Dr. Paul Garner? I'm sure he'd love to have the RCP tell him to exercise right now.
Seriously, though, he sounds like he might be a good ally on this.

 

@PhysiosforME , another one for you folks to look at.

 

The author, Derick T Wade, is a consultant in neurological rehabilitation at Oxford University Hospitals and visiting professor at Oxford Brookes.

He’s written books on stroke recovery, MS service provision/ managing chronic disability, measurement in neurological rehabilitation, and rehab of cognitive deficits.

He’s on Twitter, his bio says he’s interested in “questioning the evidence, especially behind orthodox beliefs”...

https://twitter.com/user/status/1270649682532933633

 

I see Millions Missing France are on the case again.

https://twitter.com/user/status/1271161291919458307

 

from @rvallee post

that'll be a first.

 

from the German article.

It has been known since 1934

 

Oh in PACE and all other trials they also claim to monitor harm and never do. Because they don't consider PEM or ME deterioration to be harm. That won't change.

 

This is what he says on PACE:

 

"The study suggests that everyone with the condition should be offered the treatment, and every patient who wishes to be helped should be willing to try one or both of the treatments. It also means that we can allocate resources to treatments that will benefit patients and, more importantly, stop allocating treatments that do not have proven efficiency. Further research should identify ways that treatments derived from these may deliver greater benefits."

Why would the study suggest the bit in bold? No need to say more I guess.

 

This is one of the quotes that upset me the most at the time of PACE publication, because it implies, strongly, that anyone who does not want to try these "treatments" must therefore not want to be helped. ie if you don't want to do CBT/GET you want to stay ill. It's disgusting.

 

Weak. Very weak.

 

I agree with him that an effective treatment can give us clues about causative factors. An ineffective treatment also does. The PACE trial therefore tells us that recovery from ME/CFS does not depend on the targets of CBT and GET, illness beliefs and avoidance of exercise.

 

That's one of the most frustrating things. If it "works" it proves the assumptions. If it doesn't work it doesn't disprove them. That's not a serious process. If one commits to a large trial they have to accept the conditions they set and if they set out to prove an assumption it goes both ways when it fails.

Otherwise it's basically like gambling but you only keep the wins, never have to pay the losses. With actual human lives. Millions of them. That kind of deal doesn't exist anywhere else in society, at least the respectable parts of society. It's completely corrupt.

 

Like witch trials. If you sink, you're not a witch, but you're dead.

 

Weak coverage in the Canadian press. No research done.

'Great medical mystery' as COVID-19 'long-haulers' complain of months-long symptoms

https://www.ctvnews.ca/health/great...rs-complain-of-months-long-symptoms-1.4981669

It's not all bad, they do highlight the need for research, but this is just weak sauce.

@ScottTriGuy, how do we work with the ICanCME thing? Is it set up? No visible communication yet. Starting to take a long while, frankly. Now that we have people high up, might as well flex that bureaucratic muscle. It would work better if it came from government.

 

We applied for some of the recent Covid research funding -- the executive committee is meeting in about a week so the potential Covid - ME connection should be an agenda item (if I get my way).

In Ontario, MMC is part of a small team connected to one of the emergency preparedness physicians, and we're connecting the Covid-ME dots for him.

I'm not impressed with Dr Gorfinkel's reference to psychological causes. Her twitter: https://twitter.com/DrGorfinkel

I wonder what her still sick with Covid sister, also a doctor, thinks of that?