UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

good reflections from Sten Helmfrid:

 

This also aligns with @Brian Hughes' coining of "eminence based" science. As Sten Helmfrid says, medical profesionals have no hope of fully digesting all the mass of scientific papers that come their way, and inevitably do the very human thing of trusting the authors they believe to be trustworthy. And the eminence brigade's great skill is to convince others of their trustworthiness. I think that now is a good time, as highlighted by Helmfrid here, to really press home to the wider medical community how eminence and trustworthiness can be such uneasy bed fellows. Their eminence is undeniably well established, but with the new guideline's dismissal of their cr@p science, the evidence is now apparent that trustworthiness should not be assumed.

 

Paul Garner has shared the opinion piece on twitter with the following text:

Somebody being honest about the perversion of the GRADE process by Nice on ME/CFS. We reported this in the BMJ. This story is yet to break

 

Well if NICE never knew the incredible pseudo-science and prejudice pwME were up against, they assuredly must have had their eyes opened wide by now.

 

I wonder how the people at Cochrane are handling it, especially those involved with decisions about us. What do they think of one of their section editors and major figure promoting blatant quackery and basically bigotry against patients? I'm not sure I'd like the answer to that. Especially important given the relationship between the two organizations.

 

She seems to think her pseudoscience refutes her country’s scientific research into oxidative stress, they clearly state their opinion in the scientific literature, which she links to her introduction then ignores.

“Trying to reverse this with one with an escalating training method like GET seems unreasonable, in line with the new recommendations of NICE”
https://physoc-onlinelibrary-wiley-...auto&_x_tr_tl=en&_x_tr_hl=en-GB&_x_tr_pto=nui

 

But then what is recognised by NHS psychotherapists seems to be based on magical thinking rather than evidence anyway!

I bet the 'need for adaptation' is just something made up because it sounds as if it ought to be so. Either that or they found autistic people just couldn't understand what the therapist was on about, and were just more likely to say so than other people who also couldn't understand what they were on about.

 

Oh good, another silly quote to put in my book.

 

There are quite a few stories about ME/CFS that are yet to break. PG can get to the back of the queue with his.

 

How can they continue like this? It's absurd. What does he have to say that is too much? Do they agree it's all a "perversion" of GRADE?

 

Yep. It's all based on stereotypes. Now I've read through the updated NICE adult autism guidelines I'm not overly impressed with them. There are some useful parts, but a lot of it is focused on family and carers rather than the autistic individual themselves, which seems odd for NICE guidelines. Large parts of it read like it's been put together based on the views of parents of autistic adults, not autistic led at all. I still need to unpick it in detail as due to focusing on the NICE ME/CFS guidelines I wasn't even aware they had updated the adult autism one.

The updated guidelines also talk about behavioural therapies without specifying what they are, let alone the evidence for their efficacy and safety.

I also agree autistic people are more likely to just state that the therapist is talking bull s***. And not dressed up in nice words either. I remember doing this when I was seen in the Pain Clinic in Somerset about 10 years ago, the booklet they gave me was full of nonsense and made up graphs. The doctor (who was also the author of the booklet's 6 week CBT course) wasn't impressed when I pointed that out, especially as he had a colleague sitting in our our consultation

 

Someone on this forum said that they had come across a case where CBT was prescribed for someone who was nonverbal.

 

It does look really horrible when presented like that but I wonder if that is perhaps not a fairly standard referral statement, where the content is arrived at by a) the budgetary limitations inherent in the commissioning contract and b) a competence and safety assessment of the staffing level and skills which are supported by the commissioning contract. Essentially the service is saying "we aren't paid to do x safely" so please don't send us patients we don't have the staff or skills to deal with.

This is an inevitable consequence of cost led clinical commissioning leading to disparate and disjointed service provision. Services have to define who they can and can't see for reasons of cost and safety. The system is even more problematic with the inclusion of private sector bidding because the advantage is for bids drawn as narrowly as possible - factory health care where multiples of exactly the same treatment can have reduced costs simply by scale. Complex cases are left to NHS in house services to somehow cope with on budgets which reduced by funding having followed all the easier work farmed out to private sector providers. The result for patients seen as 'complex' is either long waiting lists or no services at all.

I think this is yet another case where it looks really bad for ME/CFS specifically but is actually symptomatic of health care in the UK in general. Not that 'were not the only ones' is of any comfort but it's important to understand where the battles need to be.

 

I guess that all relies on you knowing you might be autistic, and its apparently very underdiagnosed. Maybe a switched on therapist would pick up signs of undiagnosed autism depending on how the CBT goes.

 

Shouldn't be any major issues with funding for long covid right now. There are going to be major issues finding the right professionals to deal with complex syndromes, perhaps they feel they don't have the expertise to address the long covid complexity AND the other diagnoses together.

(To be clear, I don't think rejecting those patients from the service is an acceptable solution).

 

I wonder whether that might be why some seem to think it expedient to lie low at the moment.

 

I think they might be a bit puzzled by what they can sensibly do next ...

 

New tweet today from Paul Garner:

- Nice lost the plot with GRADE with ME/CFS, according to the people that actually developed the methods: "a disastrous misapplication of GRADE methodology is the source of the problem".

He has added this link to the tweet:
https://www.bmj.com/content/371/bmj.m4774/rapid-responses

 

Link doesn't work for me.