NICE guideline on ME/CFS: robust advice based on a thorough review of the evidence, 2024, Barry et al.

I thought it was a good response. Loved the bit about fever and tonsils. Not too sure about the bit about the exercise programs when people feel ready to increase their activity levels. Overal I'm quite happy with this debunk. Curious what my friend Hans Knoop will think about it.
 
Lidia Thompson said:
I LOVE THIS!!
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Another of my favorites is that paragraph on endpoints:
SNT Gatchaman said:
Endpoints to assess efficacy
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"In 2019, stakeholder feedback regarding the NICE guideline on depression expressed concern that NICE had not considered long-term outcomes. They requested that ‘NICE should conduct a proper analysis of 1 and 2-year follow-up data where available and prioritise treatment recommendations made on the basis of this data’ and subsequently stated that ‘long-term follow-up, where available, must be included and prioritised’. This is precisely what NICE has done in the ME/CFS guideline."

Reference is:

Wessely S, Gerada C, Edwards J (J=Jennifer), et al. Campaign Coalition position statement. 2019.

https://www.bacp.co.uk/media/13407/...e-nice-guideline-for-depression-in-adults.pdf

So Wessely signed both: (1) the anomalies paper that criticized NICE's decision to prioritize long term outcomes in the assessment of the evidence for the efficacy of ME treatments and (2) the request to NICE to do exactly this -- prioritize long term outcomes -- in the assessment of the evidence for the efficacy of depression treatments.
 
MSEsperanza said:
Another of my favorites is that paragraph on endpoints:


"In 2019, stakeholder feedback regarding the NICE guideline on depression expressed concern that NICE had not considered long-term outcomes. They requested that ‘NICE should conduct a proper analysis of 1 and 2-year follow-up data where available and prioritise treatment recommendations made on the basis of this data’ and subsequently stated that ‘long-term follow-up, where available, must be included and prioritised’. This is precisely what NICE has done in the ME/CFS guideline."

Reference is:

Wessely S, Gerada C, Edwards J (J=Jennifer), et al. Campaign Coalition position statement. 2019.

https://www.bacp.co.uk/media/13407/...e-nice-guideline-for-depression-in-adults.pdf

So Wessely signed both: (1) the anomalies paper that criticized NICE's decision to prioritize long term outcomes in the assessment of the evidence for the efficacy of ME treatments and (2) the request to NICE to do exactly this -- prioritize long term outcomes -- in the assessment of the evidence for the efficacy of depression treatments.
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Good spot
 
I don't know why it took 32 years to publish this, or why it's paywalled, but whatever it's done. And it looks rather good.

Many of the intervention studies for ME/CFS rely on unblinded subjective outcomes. Where reported, objective outcomes data such as activity levels, employment levels, disability payments or fitness data showed no or minimal improvement in these trials.
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I've been waiting a few days to use this:
goodharts_law.png


And of course it's even worse here because it's not even a metric. But trying to optimize an outcome like this always leads to excessive bias, especially as the trials explicitly try to manipulate people's responses on subjective questionnaires. I'm not even sure this level of bias can be found in textbook as something to avoid, because it's too excessive, but it's basically the foundation of biopsychosocial ideology so it's accepted despite being widely understood to be invalid. So damn weird.
The evidence review was quality assured externally, and the rating of the evidence as ‘low to very low quality’ is consistent with other reviews, including the Cochrane review on exercise therapy for ME/CFS.
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And far more than this, but it's important to point out that Cochrane's own evidence says the same, they just conclude their preference anyway. IQWIG, the German NICE, excluded all but 3 on this basis. A recent systematic review boasted of exercise being great for depression, and literally all the studies rated at the lowest level of certainty and high bias. This is a plague that is ruining both psychology and evidence-based medicine, and it would be really important for NICE to recognize that this is far from a problem limited to this shady quackery, it's all over the place and they have a responsibility to rein it it.

Many of the guidelines they have published since have the exact same problems, but they went ahead and made the recommendations anyway. IQWIG did the same, after excluding almost all the studies. And recently we saw a "meta review" by Knoop and his acolytes that basically only selected studies they themselves did. The entire discipline is digging itself into invalidity, in my opinion already has.
 
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MSEsperanza said:
Another of my favorites is that paragraph on endpoints:


"In 2019, stakeholder feedback regarding the NICE guideline on depression expressed concern that NICE had not considered long-term outcomes. They requested that ‘NICE should conduct a proper analysis of 1 and 2-year follow-up data where available and prioritise treatment recommendations made on the basis of this data’ and subsequently stated that ‘long-term follow-up, where available, must be included and prioritised’. This is precisely what NICE has done in the ME/CFS guideline."

Reference is:

Wessely S, Gerada C, Edwards J (J=Jennifer), et al. Campaign Coalition position statement. 2019.

https://www.bacp.co.uk/media/13407/...e-nice-guideline-for-depression-in-adults.pdf

So Wessely signed both: (1) the anomalies paper that criticized NICE's decision to prioritize long term outcomes in the assessment of the evidence for the efficacy of ME treatments and (2) the request to NICE to do exactly this -- prioritize long term outcomes -- in the assessment of the evidence for the efficacy of depression treatments.
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Dude just has his effort preference compass all screwed up. It points to wherever his interest lies. Double entendre intended.

But it is nice that NICE pointed out the hypocrisy.
 
MSEsperanza said:
Another of my favorites is that paragraph on endpoints:


"In 2019, stakeholder feedback regarding the NICE guideline on depression expressed concern that NICE had not considered long-term outcomes. They requested that ‘NICE should conduct a proper analysis of 1 and 2-year follow-up data where available and prioritise treatment recommendations made on the basis of this data’ and subsequently stated that ‘long-term follow-up, where available, must be included and prioritised’. This is precisely what NICE has done in the ME/CFS guideline."

Reference is:

Wessely S, Gerada C, Edwards J (J=Jennifer), et al. Campaign Coalition position statement. 2019.

https://www.bacp.co.uk/media/13407/...e-nice-guideline-for-depression-in-adults.pdf

So Wessely signed both: (1) the anomalies paper that criticized NICE's decision to prioritize long term outcomes in the assessment of the evidence for the efficacy of ME treatments and (2) the request to NICE to do exactly this -- prioritize long term outcomes -- in the assessment of the evidence for the efficacy of depression treatments.
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Oh, that is a thing of beauty!
 
MSEsperanza said:
So Wessely signed both: (1) the anomalies paper that criticized NICE's decision to prioritize long term outcomes in the assessment of the evidence for the efficacy of ME treatments and (2) the request to NICE to do exactly this -- prioritize long term outcomes -- in the assessment of the evidence for the efficacy of depression treatments.
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Well spotted. I am imagining them enjoying putting that in.

I will share it on Xitter.

I’m reminded of Scott Fitzgerald famously wrote: “The test of a first-rate intelligence is the ability to hold two opposing ideas in mind at the same time and still retain the ability to function.”

Previously, I said that I hoped the response from NICE would be as good as it needed to be, and I think it is.

As far as I can see, they seem to have got all the key arguments right, and the tone is spot on.

Ridiculous that it’s behind a paywall.
 
Is there any way we can campaign to get NICE's statement put under the responses tab to the original article, without a paywall?
Surely, surely NICE should have the right to defend itself after aspersions have been cast on their integrity?
I just don't understand what is happening here.
 
MSEsperanza said:
Another of my favorites is that paragraph on endpoints:


"In 2019, stakeholder feedback regarding the NICE guideline on depression expressed concern that NICE had not considered long-term outcomes. They requested that ‘NICE should conduct a proper analysis of 1 and 2-year follow-up data where available and prioritise treatment recommendations made on the basis of this data’ and subsequently stated that ‘long-term follow-up, where available, must be included and prioritised’. This is precisely what NICE has done in the ME/CFS guideline."

Reference is:

Wessely S, Gerada C, Edwards J (J=Jennifer), et al. Campaign Coalition position statement. 2019.

https://www.bacp.co.uk/media/13407/...e-nice-guideline-for-depression-in-adults.pdf

So Wessely signed both: (1) the anomalies paper that criticized NICE's decision to prioritize long term outcomes in the assessment of the evidence for the efficacy of ME treatments and (2) the request to NICE to do exactly this -- prioritize long term outcomes -- in the assessment of the evidence for the efficacy of depression treatments.
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I remember pointing out this piece in the thread on the Anomalies paper. I’m very glad NICE picked up on it.
 
Robert 1973 said:
Well spotted. I am imagining them enjoying putting that in.

I will share it on Xitter.

I’m reminded of Scott Fitzgerald famously wrote: “The test of a first-rate intelligence is the ability to hold two opposing ideas in mind at the same time and still retain the ability to function.”

Previously, I said that I hoped the response from NICE would be as good as it needed to be, and I think it is.

As far as I can see, they seem to have got all the key arguments right, and the tone is spot on.

Ridiculous that it’s behind a paywall.
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https://twitter.com/user/status/1762988605209722917
 
In this guideline, the longest follow-up time point for which data were available from each study was extracted. The committee considered long-term data of treatments for ME/ CFS to be more reflective of real-world efficacy, and so more helpful for decision-making and implementation in clinical practice. ME/CFS is, after all, a long-term condition.
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Pleased this point has been made. The time frame for assessing primary outcomes for a condition should be determined by its natural course (when untreated). For chronic conditions it should be a minimum of 2-3 years, to allow all the short term non-therapeutic effects of treatment, and natural variability, to wash out.

The evidence review was quality assured externally, and the rating of the evidence as ‘low to very low quality’ is consistent with other reviews, including the Cochrane review on exercise therapy for ME/CFS.
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MSEsperanza said:
Another of my favorites is that paragraph on endpoints:

"In 2019, stakeholder feedback regarding the NICE guideline on depression expressed concern that NICE had not considered long-term outcomes. They requested that ‘NICE should conduct a proper analysis of 1 and 2-year follow-up data where available and prioritise treatment recommendations made on the basis of this data’ and subsequently stated that ‘long-term follow-up, where available, must be included and prioritised’. This is precisely what NICE has done in the ME/CFS guideline."

Reference is:

Wessely S, Gerada C, Edwards J (J=Jennifer), et al. Campaign Coalition position statement. 2019.

https://www.bacp.co.uk/media/13407/...e-nice-guideline-for-depression-in-adults.pdf

So Wessely signed both: (1) the anomalies paper that criticized NICE's decision to prioritize long term outcomes in the assessment of the evidence for the efficacy of ME treatments and (2) the request to NICE to do exactly this -- prioritize long term outcomes -- in the assessment of the evidence for the efficacy of depression treatments.
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:D

Fainbrog said:
Oh, that is a thing of beauty!
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Par excellence!

Robert 1973 said:
Can you explain this apparent contradiction @WesselyS?
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I believe the term of art is 'anomaly'. :whistle:
 
Lidia Thompson said:
Is there any way we can campaign to get NICE's statement put under the responses tab to the original article, without a paywall?
Surely, surely NICE should have the right to defend itself after aspersions have been cast on their integrity?
I just don't understand what is happening here.
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The 2023 Peter White et al Review (Archive) and this recent NICE response (Online First) are both in the BMJ's Journal of Neurology, Neurosurgery & Psychiatry (JNNP) not on the https://www.bmj.com.

Does the JNNP have a publicly viewable responses tab for its papers, reviews and commentaries in the same way that the BMJ has "Rapid Responses"?

The BMJ's Rapid Responses have a word limit:

"From March 2022, the word limit for rapid responses will be 600 words not including references and author details. We will no longer post responses that exceed this limit. The word limit for letters selected from posted responses remains 300 words"


The 2023 Peter White et al Review is in the Archive section of JNNP and I can't see any responses tab, as such - or am I missing something?


Edited to add: Rapid Responses to the 2023 Peter White et al Review can be found here: https://jnnp.bmj.com/content/94/12/1056.responses
 
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