NICE ME/CFS guideline - draft published for consultation - 10th November 2020

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I can't understand why on earth Paul Garner, whose own public account of his confused experience complicates his objectivity and who is now obviously biased, would be used in this article. It's so suspect. How is he even got involved?

I'm really scratching my head over this one. It's not like he's an authority on me/cfs, or treats me/cfs patients. He's affiliated with one of the people who quit for heaven's sake. Did someone at BMJ refer him for this article? It's sort of diabolical.

He's quoted in another article by the author, in mash of NICE/LONGHAUL

Garner, who is coordinating editor of the Cochrane Infectious Diseases Group and one of the founders of the Cochrane Collaboration, said that he was “furious” when he read the 2007 NICE advice and the conclusions of the Cochrane review, which also support exercise therapy and mention uncertainty about the side effects of adaptive pacing.10
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https://www.bmj.com/content/370/bmj.m2912

Also for completeness the author's other me/cfs articles in BMJ

https://www.bmj.com/content/371/bmj.m4356

https://pubmed.ncbi.nlm.nih.gov/26511755/

Like it took 15 seconds to know Garner and Beadsworth ARE COLLEAGUES. They are at the same school in the same university in the same city! Forget the fact that you have PG with the contradictory sentiment by the same author just because at the the time his personal experience was the opposite. It's so crazy.
 
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Adrian said:
I don't understand why anyone would say there is a need for agreement and unity. There is good and bad science and that is what needs to be recognized. There should be no compromise and negotiation with those backing bad science.
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Love this from BH,(my emphasis)
"The BMJ narrative here is especially Orwellian. It claims that we should take the views of “respected service providers” more seriously than NICE’s own review of empirical evidence.


The idea that we should attach additional weight to the views of “respected service providers” is just nonsense. If we were to do that, then we would not need NICE guidelines at all. We would not even need NICE. Simpy put, the whole point of review institutions such as NICE is to provide structures for ensuring that clinical practice is guided by evidence and not by opinion.


The entire basis for the existence of NICE is our enlightened understanding that scientific evidence is superior to frontline anecdote.


In the old days, clinicians relied on their instincts, while patients were expected to put up or shut up. But these are supposed to be the new days. The fact that some “respected service providers” aren’t getting their own way is not a red flag warning us about a broken review process. It is a sign of progress. Data, not status. Evidence, not eminence...."
 
I'm not sure if someone has already mentioned this but in Busse's letter where he refers to the NICE review as a "disastrous misapplication of GRADE" (https://www.bmj.com/content/371/bmj.m4774/rr-7), quoted in the recent almost satirically biased BMJ article, it's pretty obvious he only actually read the main NICE guideline document and not the evidence review documents. He claims that the draft guidelines doesn't provide a "GRADE evidence summary of findings table for fatigue related to exercise interventions", even though it does, in this document: https://www.nice.org.uk/guidance/gid-ng10091/documents/evidence-review-7. And he also claims that they didn't downgrade evidence on the basis of "bias, inconsistency, imprecision, and subjective outcomes", even though in that document they clearly explain they did do that and why they did.

It's frustrating that the opinion of someone who clearly couldn't even find his way to the right document and read it is being used to undermine the NICE review in a BMJ article.
 
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As annoying as the BMJ's mis-representation of facts is, it seems to me that the BPS gang have been rather short-sighted in taking on NICE.

I can imagine that those independent people appointed to the guideline committee won't be thrilled to have it suggested that (assuming things are as we expect and GET is gone) they have bent to the will of the noisy patients who just can't bear to have a mental illness label. I can also imagine all the NICE staff who carefully reviewed the evidence and pronounced it useless will not be feeling delighted to have it put about in the BMJ that they didn't do their job and instead just mindlessly believed the noisy patients.

So, it seems to me that this BMJ article (and any other publicity the BPS people produce against the guideline) might actually back-fire, strengthening the resolve of people with power who otherwise might not have been too bothered, to point out the flaws in the BPS studies and help ensure they stop happening.

The logical thing for BPS people to do at this point would be to very quietly put up the surrender flag on GET for ME/CFS, if necessary sacrificing those who staked their reputations on PACE and who refuse to go quietly. And then, carry on exploiting the desperation of the people with MUS and Long Covid labels by applying rebranded mind and exercise therapies. Indeed for those BPS people who can bend like the reed rather than stand against the storm like an oak, there will probably still be easy ways to keep being paid to provide 'CBT and GET-like' services to people with ME/CFS for a long time to come.
 
Adrian said:
I don't understand why anyone would say there is a need for agreement and unity. There is good and bad science and that is what needs to be recognized. There should be no compromise and negotiation with those backing bad science.
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I am not sure it is quite that simple. This should be about interpretation of evidence to formulate national guidelines. There are two aspects. What the evidence indicates and what ought to be done to achieve best practice on the basis of the evidence. It comes down to a question of where the disagreements lie.
 
Jonathan Edwards said:
As indicated on another thread, NICE seem very confused about what conflict of interest means.
Charles has no conflict of interest because his interest onNICE and his interest at MEA are identical - providing honest information for the benefit of PWME. For the therapists the situation is very different.
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It means conflict to what Sir Simon has been saying all along, that’s all.
 
Not clear why they resigned. All speculation I think at this point. Paul Garner should not have been approached. Why should his opinion matter?

The question is, does this mean the final guideline is sticking to the central recommendations in the draft, or not? We should know later this week as stakeholders.

Gods I am anxious.
 
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Russell Fleming said:
Not clear why they resigned. All speculation I think at this point. Paul Garner should not have been approached. Why should his opinion matter?
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Ikr! I think the unseriousness of the article is underlined by his presence. They could have interviewed anyone, even a Wessely or a Sharpe would have made more sense, instead they interview the guy who goes round promoting lightning process for a different set of patients.

The business with Charles Sheppard I find esp odd: his role among the patient community has not changed since the beginning of the guideline, why is it a stepping down matter now?

Having had a look at this since last night, I'm of the view that, in the round, the resignations just mean that those people didn't get what they wanted, which is probably a good thing.
 
FMMM1 said:
How do you submit a rapid response - I'm thinking of replying.
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https://www.bmj.com/content/374/bmj.n1937
Top right under Article Tools. Click on Respond to this article. You have to give your name etc. Be careful with the address - you have to fill it in, and it is published, so only give as much of your address as you want public. I just fill in UK.

You don't have to have a subscription.

You can't edit once submitted, so check carefully.

And you have to wait to see if it's got through. I made the mistake of thinking it hadn't and submitted again.

You get an automated email saying it's been received, and then you wait for an editor to approve it before it appears.
 
Trish said:
Damn. I just spent ages writing a rapid response and lost it when I tried to submit it, getting a server error message.

I should have kept a copy.
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Just a small comment as an aside and for the benefit of other members here who have been spoilt over time by this forum's capable infrastructure :thumbup:.

For any online form submission >3 lines, it's often a good idea to compose in a separate text editor and then copy/paste to the web form. Saves much irritation if the connection is lost.
 
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