Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

Thanks Andy. I updated the link (again).

 

@dave30th must have had an early night.
Maybe Michael Buchanan should show some interest.

I may be wrong but I don't think the medical establishment would have made such a fool of itself thirty years ago. 'They stole my patients' said President Chalder.

I see that Guyatt, Turner-Stokes and Goddard are not on this. The Venn diagram around this set of authors is quite specific to a certain type of true blue pottiness (or pettiness).

Remember that NICE set up a Round Table under Dame Carol Black and invited all these people along to raise doubts. The few doubts raised were dealt with very simply and nobody said a further word.

 

With NICE's reputation being questioned, I have gone nuclear. Please retweet etc. No one else seems interested in telling this story.

https://twitter.com/user/status/1678674987656290306

 

As far as I can see it is the same old, same old.

 

It did strike me that a documentary from someone like Buchanan could well start with music over a screenshot of that message 'there is a way'.

 

The Guardian article has been corrected ('chronic fatigue' removed, and prevalence figure corrected). Unfortunately, the content of the article remains!

 

They've changed the headline but still refer to it as "chronic fatigue" several times in the body of the article.

 

It's just endless isn't it? Reading what Chalder said in the Graun about lives being destroyed, while lying in bed because my life has been utterly destroyed by her/the other author's theories, is an absolutely dreadful feeling.

They have no shame. I really hope that NICE expand and double down on their quoted statement.

Also Paul Garner can just fuck right off.

 

They're trying to fabricate controversy by selectively presenting bits of information to an audience that can't tell it's being shown information in a manipulative manner.

The whole thing falls apart when the information is added that CBT/GET proponents were given every opportunity to discuss all this with NICE, and there even was an additional out-of-protocol round table meeting later to give them another chance.

The NICE team has already said they would respond in detail.

I don't think it story will have much effect outside of their own circles because you can't fight NICE with this kind of misinformation campaigns. These campaigns work against marginalized patients who have no platform or credibility to begin with.

 

The Graun splash is something of a PR coup, sadly. I hope NICE’s rebuttal gets traction with broadsheet rivals - but they’ll probably spend too long working on it.

 

I just cant take any more of this rubbish. Seeing this BS reported in the guardian again. they just flippin love it dont they, there is an air of glee about it, it makes me feel sick.

 

They all see their interests threatened by the paradigm shift toward viewing these conditions as biomedical post-viral or post-acute-viral illnesses. this is why I have been spending lots of my time smacking down false claims of prevalence and bogus hyping of so-called "rule-in clinical signs" for FND. the topics are intimately linked.

 

I wonder if they feel emboldened by the inordinate amount of time it is taking to implement the new NICE guidelines?

 

If I hadn't listened to this shit, and excercised and pushed, I would be able to go downstairs right now, make myself breakfast and wander into town. Instead I am waiting for my partner, who also has ME, to wake up and make me some food, so I can take my medication.

These theories turned my life from a reduced but livable existence into an unending nightmare. This is the human cost to this bullshit, and I am very far from alone.

 

Getting it Right: Addressing Myths about the 2021 NICE Guideline for ME/CFS - The Science Bit
Pretty sure @Brian Hughes takes down much of this in his video linked above

 

I'd be grateful if someone could DM me the article PDF, or post here if you so wish.

EDIT: Now received.

 

This is in a newspaper - not a response to the journal editor. Do NICE respond to critical peer-reviewed journal articles like this - via the journal editor? I'd hope so? Any ideas anyone?

 

It is embarrassing this got published in a journal.

Good to hear from you that this is a small cohort. I hope they are becoming more isolated and obsolete with every publication / public outing of their sour grapes.

The absence of reference to the Round Table and the outcome from this in White et al's paper are glaring.