NICE Statement about graded exercise therapy in the context of COVID-19

Clinician’s Letter to NICE Results in Statement on Graded Exercise for Post-Covid-Syndrome

https://meassociation.org.uk/2020/0...t-on-graded-exercise-for-post-covid-syndrome/

 

are NICE aware of what TC et al are recommending re post-covid patients

https://www.s4me.info/threads/possibility-of-me-or-pvfs-after-covid-19.14074/page-29#post-269441

 

I've just emailed Dr Weir and the Countess of Mar about this, with the video and transcript and suggested they inform NICE.

 

https://twitter.com/user/status/1282716265967226885

 

The entire point of PACE and its peripheral experiments was to dismiss rest and pacing. That's why they named it this way, even though pacing was not actually compared. Richard Horton and Michael Sharpe presented it as a difference of philosophy, the belief being that rest and pacing were wrong and ignoring symptoms and pushing through was right. There were technically four arms to PACE but in reality they were 2 major branches: complex disease vs. "there is no disease".

So NICE are in a real bind here. This was never about evidence, it was about philosophy and politics, nevermind the millions of lives ruined by doing cheap philosophy in pragmatic trials. Pacing is anathema to the ideology they have pushed in practice. It is the original concept that Wessely et al effectively dismantled, not by showing better evidence but by lying, cheating and corrupting the institutions of medical science. And by promising massive savings, which will never materialize but have still enabled billions to be spent on this monstrosity.

Promoting pacing can only happen by recognizing that the whole controversy was about us being right all along. It means that we have been unfairly maligned for being right while medical institutions effectively and knowingly, or at least with everything at their disposal to know enough, did harm. Thousands of complaints were dismissed over decades, insisting in the ideology over patients' safety.

But we were right. And they were completely wrong. The cost was millions of destroyed lives for no gain whatsoever. But worst of all: we were right, and that destroys many myths that medicine holds dear, the belief that patients should be treated as dumb children given strict instructions that should be followed like a soldier jumping on command. A belief that is central and fundamental to the BPS ideology.

The BPS ideologues burned all the boats and bridges. They have nowhere to turn without acknowledging they committed one of the worst willful atrocity in the history of medicine. And they place their ego far above the millions of lives they destroyed. It's a very tight bind that will sweep many careers. But, hey, we freaking told you so.

 

I thought that was also very apt and relevant, reflects on the toxicity of positive psychology:

https://twitter.com/user/status/1282721636781895680

 

Unfortunately I suspect they will do as they have always done, which as a first step involves either plan A (deny that long covid has any objective reality - this they already seem to be attempting) or plan B (if/when plan A fails then split off the group that has post covid symptoms - to seperate them from history, and us, so that they weren't 'wrong' and therefore haven't really commit any atrocities at all, with anyone claiming they (BPS) are less than perfect in everything proving their need for BPS 'help')

Plan B may also involve splitting the post covid group still further, into those with demonstrable medical harm and those without.

All part of their SoP so I'd expect to see it tried.

 

I see those quotes differently. they make a nod to "pacing" only at the beginning--that's kind of like "finding a baseline"--the rest seems geared toward getting 'back to normal' to quote our old friend.

 

where are these?

 

The recommendations on graded exercise therapy in CG53 only apply to people with a diagnosis of ME/CFS as part of specialist care, and CG53 is clear that this should be part of an individualised, person-centred programme of care, with GET only recommended for people with mild to moderate symptoms.

This is from the new NICE release. This might be termed a nice distinction. It needs to be understood that the original recommendations to gradually increase effort regardless of symptoms seems to have been made in reliance on the work of RHT Edwards on muscle physiology. It was thought safe in the sense that no damage to muscle could be shown.

What the likes of Wessely and Sharpe fail to point out is that Edwards , prior to Oxford criteria, claimed to be working on "Effort Syndrome", which included ME and PVFS, but which also included many other potential conditions. This work is often later referred to as having been about CFS. It may or may not have been. If only someone had thought to point out the distinction which now seems so important to NICE. I'm sure people did.

According to the Wessely, Hotopf Sharpe book, by this time, Effort Syndrome was thought to be of psychological origin.

These are discrepancies which should have been explained. One can however understand the desire not to stand too close to someone who said you can cure your effort syndrome if you really want.

 

I find this alarming.

ME is G93.3, not CG53.

PVFS is G93.3, not CG53

The whole co-opting the name and chopping and changing it around seems to have resulted in a classification error, obviously accidental.

I was diagnosed with PVFS G93.3 (I was shown this and the difference between this and the other code shown to me in the surgery)

Does this mean that under the current system GET would never be considered an appropriate 'treatment' for me, and thus never be prescribed/recommended.

Does it mean that the NICE recommendations for ME/CFS do not in fact, despite the clear similarities in the name used tor it and that used to describe my condition, apply to me, as they are only for CG53 ME/CFS and not for G93.3 ME - and that they never have done.

ETA - Surely NICE is supposed to be reviewing the guidelines for G93.3, not for CG53 (whatever the name given the ICD codes are distinct and in different diagnostic categories). Are we just going to end up with an update to the NICE guidelines for 'ME/CFS' CG53 and no update to the guidelines for 'ME/PVFS' G93.3 at the end of this.

 

As i understand it G93.3 is the code from the WHO's International Classification of Diseases - the ICD(10).

CG53 is NICE's own 'Clinical Guideline' number 53 - on the diagnosis & management of CFS/ME

2 totally separate things.

 

I get the impression that Paul Garner may have a significant positive impact within Cochrane as time goes by. To begin with I was not sure that he really understood the depth of the problem with therapist-delivered treatments. I think he may now be coming to see just how rigged the system is.

 

He clearly understands that something must have gone wrong for the NICE guidelines to recommend GET and not pacing. Not sure he understands the PACE trial yet.

 

https://www.rcpjournals.org/content/clinmedicine/early/2020/06/08/clinmed.2020-0353

I captured a few choice quotes on this post: https://www.s4me.info/threads/possibility-of-me-or-pvfs-after-covid-19.14074/page-22#post-266507.

Although re-reading it it was published by the Royal College of Physicians, I think that's the one Wessely's in charge of, so not GPs and just a proposal. I thought it was more official than that. But it basically reads as if Wessely, Sharpe and Gerada wrote it themselves, or inspired it. Same ideas.

 

@rvallee
Simon Wessely has not been associated with the Royal College of Physicians (RCP) but

“he was.....past President of the Royal College of Psychiatrists, current President of the Royal Society of Medicine and is also chairing the Independent Review into the Mental Health Act.“

(RCPsych)
(RSM)

https://www.ukri.org/about-us/gover...-committee/our-council-members/simon-wessely/

 

Err... Has anyone else noticed that this statement by NICE hasn't actually been made publicly available....?


eta: Although it is available here: https://www.nice.org.uk/guidance/indevelopment/gid-ng10091

 

Having long covid 19 is making some people understand how deep the mistreatment of ME/CFS patients goes. I can't wait to see their reactions when they read up on PACE. The whole story in all its ugly details.

https://twitter.com/user/status/1283032882689310723

 

Ah that's the one. Thanks.

It took me a long time to learn about the general details of the ME thing but now I'm at a point where there's just too many details to keep track of who and when and whatnot. So much mind clutter.

I just want my damn brain back It wasn't great or anything but it did me fine. Ah well...