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

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

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.

 

yes.. Tanya did!

 

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.

 

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.

 

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.

 

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.

 

I believe stakeholders are to receive the guideline two weeks before release date, which is today. Unless anyone else has any other information?

 

I think the only rational interpretation is that the final report will stick to the draft.
There may be a minority report from those who stepped down but it might be hard for them to produce something that doesn't look sour grapes and isn't torn to pieces.

 

How do you submit a rapid response - I'm thinking of replying.

Thanks

@Trish

 

https://www.bmj.com/content/374/bmj.n1937/submit-a-rapid-response. You may have to have a subscription to the BMJ (which I have via Oxford University). It's not great is it, when people affected by this article can't read it or respond to it, unless they are academics?

 

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 .

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.