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

Joan Crawford said:
Good to see.
Click to expand...
It's really wonderful to see. As well as having science on our side, this time it looks as though we also have the NICE staff and the establishment figures who were on the ME/CFS Guideline committee.

Perhaps individuals with ME/CFS don't need to do a lot of the heavy lifting on this one. In fact, if people with ME/CFS aren't out in front, it makes it harder for the BPS proponents to suggest that it's just some radical patient fringe that has subverted NICE.
:emoji_popcorn:
 
@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.
 
Last edited by a moderator:
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.
 
Last edited:
Hoopoe said:
They're trying to fabricate controversy by selectively presenting bits of information.

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.
Click to expand...

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.
 
Charles B. said:
Why are so many FND zealots on this author list? To my knowledge, they’ve contributed little to nothing in bolstering understanding of the disease. How familiar would they be with the evidence base and controversy? All strange
Click to expand...

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.
 
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.
 
Shadrach Loom said:
NICE were pretty robust in responding to the Graun’s otherwise uncritical regurgitation:


A Nice spokesperson said: “We reject entirely the conclusions drawn by the authors of this analysis, and in particular their conclusion that Nice has not followed international standards for guideline development which has led to guidance that could harm rather than help patients. In developing our guideline, as well as bringing together the best available scientific evidence, we also listened to the real, lived experience and testimony of people with ME/CFS to produce a balanced guideline which has their wellbeing at its heart.

“We will provide a detailed response to this analysis and in the meantime we are confident that system partners and the ME/CFS community will continue to work together to make sure the important recommendations in our guideline are implemented.”
Click to expand...

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?
 
Jonathan Edwards said:
@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. This is Trumpian stuff -- '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.
Click to expand...

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.
 
You must log in or register to reply here.
Back
Top Bottom