Dr David Tuller: NICE Announces Upcoming Release of ME/CFS Guideline After Prolonged Hostage Drama

[Countrygirl]

https://www.virology.ws/2021/10/20/...-S7SeG0KJhXvED1Z13rPdAh1VVMm_pBbbPTv3W3p5E4aE

Trial By Error: NICE Announces Upcoming Release of ME/CFS Guideline After Prolonged Hostage Drama
20 October 2021 by David Tuller Leave a Comment

By David Tuller, DrPH

Two days following a high-profile meeting with opponents and supporters of its new-but-still-unpublished ME/CFS guideline, the UK’s National Institute for Health and Care Excellence announced on Wednesday that it plans to release the document next week. The decision comes after a powerful cabal of medical practitioners held the process hostage for two months with unwarranted criticisms and bogus claims.

(Yes, I’m referring to Professor Michael Sharpe and others of his ilk, whose unfortunate delusions about the quality of their research persist. Sad! I advise these self-regarding experts to discuss their inevitable feelings of rejection, loss and public humiliation with their therapists and stop inflicting their anti-scientific notions on unsuspecting patients.)

 

[BrightCandle]

I thoroughly agree with Lady Shambles

iii) I’ll only ‘believe it when I see it’ wrt the embargoed Final Guideline being published without change

iv) even if it is published it’s still worse than the Draft [published in November last year] and the Draft was unfit for purpose (no matter how valiantly our representatives tried to make it better .. this is not a criticism about them). This is not what a Guideline for a severe neuroimmune disease should look like in the C21st

v) it will make absolutely zero difference to my own experience of this disease unless I’m abused and gaslighted less when I meet medics: what an indictment that is.

It is a pittance of progress and look how hard we had to fight remove from the guidelines a harmful treatment to be replaced with nothing. It is a useless response to this disease, it contains nothing of actual value positively for us. Its impact is really minimal and I doubt does a thing to change my local CFS clinic or GP's prejudicial treatment of me.

 

[wabi-sabi]

Do we know if they are releasing the draft that looked good that came out last fall or have they come up with something else to release?

 

[Countrygirl]

Do we know if they are releasing the draft that looked good that came out last fall or have they come up with something else to release?

They have watered the draft down, especially the 'exercise' section. It is not good, but less awful than the 2007 guidelines.

Apparently, they are now 'tweaking' the guidelines further before they are published.

 

[Abrin]

vi) I, like many other people with ME, am at a point with my disease presentation where I’m looking down the barrel of a gun. Life is ticking louder for some of us than others and those with presentations where this is true have NO chance of any useful, ameliorative help at all.

I do not have the words to truly express how deeply that I feel the pain of this point by Lady Shambles

 

[BrightCandle]

Apparently, they are now 'tweaking' the guidelines further before they are published.

Of course they are, I don't even want to guess what the changes are, I guess I already know.