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

Excellent article. I don't like giving the daily mail clicks but can't fault this article!

 

Oddly enough, the DM has been the best UK newspaper in reporting on ME over the years. Some misses but far fewer than the others. Which is... really really bad for the serious news media. BBC and Guardian have been absolutely awful with us, spreading disinformation unchecked.

 

It now says there are 3 replies, but I can only see 2.

 

Once again, big thanks to all people involved.

I still haven't been able to read more, but am thinking of the the committee members now busy with working on the final version amidst the ongoing worsening of the pandemic. Sending you best wishes and keeping my fingers crossed.

 

looks like we should also thank #MEAction UK :
from email
"
UK press team hits again with Mail Online article
#MEAction UK’s press team was instrumental in getting an excellent article published in the Daily Mail at the beginning of January. The article criticises the blanket advice of GPs to recommend exercise for long COVID patients without taking into consideration those with symptoms of ME, particularly post-exertional malaise. It sympathises with ME patients who were dismissed when exercise made them worse.

The article came about when freelance journalist Jerome Burne got in touch with our UK press team after we sent out our press release about NICE’s draft ME/CFS guidelines last November. Our UK press team then worked extensively with Jerome providing background information leading to the article in the Daily Mail. We applaud their work!"

 

I suspect Jerome got in touch with and worked extensively with quite a few sources for this!

 

The national competence service for CFS/ME in Norway (known for a BPS approach) submitted a commentary to the draft NICE guidelines. It's available under the headline "news" (Nyheter) at their website.

Here is direct link to their commentary
https://oslo-universitetssykehus.no...te-for-cfsme/Documents/NICEcomments-MECFS.pdf

This is their first comment:

The committee has produced consultation documents consisting of 2634 pages. In our opinion, the committee has done a biased review of the evidence, and a biased assessment of patient. The committee has discarded Cochrane reviews on exercise and CBT, and has suggested radical changes in recommendations compared with previous NICE guidance, without a balanced review of why. Lillebeth Larun and other colleagues at NIPH revised their Cochrane review on exercise for patients with CFS/ME based on critical comments in 2019, in dialogue with Cochrane chief editors.

The primary studies on the different interventions are presented in tables over hundreds of pages, with standardized assessments regarding downgrading for indirectness, risk of bias etc.
The evidence is downgraded for indirectness when inappropriate diagnostic criteria not including PEM are used, without providing evidence to support the hypothesis that effect should be mediated by type of criteria (on the contrary there is evidence that the effect is similar across different criteria). It is strange to see how evidence from well conducted trials is reduced whereas undue weight is given to evidence from qualitative studies (even for questions on effectiveness/harm).

 

"well conducted trials". Quickly demonstrates their own bias...

 

Surely most of this suffers from the criticism re a "biased review" applies to these folks. They are pedalling this crap and they haven't been able to present evidence of objective benefit to patients. If they had taken the bother to contact their fellow Norwegian's Fluge, and Mella, (or simply read their rituximab study methodology) then they would they would have identified objective criteria - activity monitors.

I think @Jonathan Edwards highlighted that really we can derive nothing of benefit from the "studies" these people carried out. Even at a superficial level since PACE (CBT & GET) didn't have objective indicators of outcome, then we don't know whether the intervention (CBT & GET) worked/didn't work. Government policy is supposed to be based on evidence; OK Yes Minister highlighted that you can cook the books by designing your questionnaire, but joking aside Government policy is supposed to be evidence based.

Rather than taking the time to submit this, the authors should have submitted something addressing the flawed nature of previous studies and how they propose to improve on this.

@Snow Leopard highlighted that ME researchers often repeat the previous failed study. The fact that these folks have volumes of flawed studies doesn't mean credence should be paid to them.

 

Yeah but if you look at the expert testimony you will see that all these studies were just hopelessly flawed in common sense terms and downgrading or upgrading or shaking it all about is all beside the point.

 

Every comment is impertinent or just plain rambling. Really earning their national incompetence service title here.

I have no idea what the bit about Larun is doing there, reads like personal grievances. Especially as it changed nothing of substance. Even more that the NICE evidence review checked the underlying studies, the Cochrane review is irrelevant here, they did the same thing except here NICE actually had to go through the process of grading, rather than serially cherry-picking and rubber-stamping.

 

neatly omitting that this review is in process of being redone.
eta: and that the former editor called for the review to be withdrawn.

 

If this is indicative of the general quality of BPSer submissions, then we have absolutely nothing to worry about.

The listed author is Ingrid B. Helland, who according to the employees page of the "national competence service", is a specialist in paediatric neurology.

I wonder if she'd recommend exercise to patients with uncompensated heart failure, unstable angina, severe pulmonary hypertension, severe aortic stenosis, or a dissecting aortic aneurysm? Uncontrolled exercise-induced asthma? Hypertrophic cardiomyopathy?

I see they've taken no notice of the rationale for the removal of GET.

I thought there would be some push-back to the committee noting population indirectness with regard to the studies using 1994 CDC or Oxford criteria; this was a predictable criticism of the evidence review, and one I'd expect the UK cabal to focus on.

You know, it might be difficult to differentiate between, say, Addison's disease and ME (especially if the characteristic skin discolouration does not occur in the former and the clinical presentation is insidious rather than one of sudden adrenal crisis), but anyone who thinks that it is at all "challenging" to differentiate between schizophrenia and ME has no business whatsoever practicing medicine.

 

Crap x a big number = an awful lot of crap.

 

That sounds right!

 

https://twitter.com/user/status/1359756904059305985

 

that some spend a huge amount of energy trying to dismiss


It hardly required any energy at all once one had read the paper
And it has been dismissed.

 

If I were doing a policy paper on this, one of the areas would be - "Financial" (economic benefit) or some such. So if this worked people who are currently not working (and in receipt of benefits/disability benefit) would be well enough to return to work - savings on social security benefits. So when this person highlights "Hope NICE take note of evidence over anecdote here" I'd be expecting evidence of people well enough to return to work post intervention (CBT in this case).

I'll have a wild guess and say that with some very dodgy "assessments" and relying on people saying they had "improved" you might be able to reduce some people benefits. However, if you objectively measured improvement e.g. activity monitors, then you'd find that the intervention hadn't actually produced a sustainable long term improvement.

There's a reason why the American military, concerned about the welfare of soldiers returning from conflict, monitored their phones - to see if they were moving around, making phone calls ---- or not moving around and not making phone calls. If those guiding the program reckoned a few questionnaires were sufficient, then they would have used that, but they are not.

I'm probably being Mr Angry here but I'm finding these people a little annoying. If you're a professional, and therefore, aware of well conducted studies (objective assessment) and poorly conducted studies (subjective assessment), then you wouldn't be relying on the non-professionals pointing out that you're talking crap.