What we're not being told about ME - UnHerd (Tom Chivers)

3 days is rubbish.

He's had well over 13 billion years to prepare.

The fact that he couldn't even be bothered to exist for most of it, and spent most of the rest being asleep, or being 5, or doing totally irrelevant things, other than working on this, was his choice, and hardly a valid excuse.
 
Lucibee said:
Err... I thought APT wasn't pacing as patients understood it? The PACE APT manual he cites even has Sharpe as an author. It looks like it was thrown together as a hodgepodge of every pacing method out there.

My (limited) understanding is that proper pacing is hard. Throw in having to travel to attend long clinic sessions every other week, and it becomes harder, particularly with the level of "homework" that was required. Is that right?
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I think it was ignored in some reassessments as a trial arm as its not a real therapy. Perhaps the claim is that it makes PACE more than a trial with a wait list or treatment as usual but APT sets very different expectations and ways to think about symptoms from GET/CBT in their models so it was a bad control
 
He'd only have make the effort to get to grips with it properly once, then he could have a string of articles out of it.

Wonko said:
3 days is rubbish.

He's had well over 13 billion years to prepare.

The fact that he couldn't even be bothered to exist for most of it, and spent most of the rest being asleep, or being 5, or doing totally irrelevant things, other than working on this, was his choice, and hardly a valid excuse.
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Precisely.
 
TiredSam said:
Sorry but I'm sick of ME tourists passing by, thinking they'll have a go, then dumping all over the place and buggering off again. Researchers, journalists, charletans of every persuasion, wannabe saviours, sick of the lot of them.

I should probably have some porridge.
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I'm thoroughly fed up too. I'm just looking for possible explanations, not making excuses for him. Where are the UK David Tullers when we need them?
 
Adrian said:
I wonder if this is a useful article in that it might help us understand the arguments they are making (and they are not strong arguments)
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It certainly is useful in helping us understand what is going on.

And worrying, because if there is a rethink of the Evidence Review, then that would destroy the main advance of the whole guideline process. At least we know better what we are up against.
 
Hutan said:
It certainly is useful in helping us understand what is going on.

And worrying, because if there is a rethink of the Evidence Review, then that would destroy the main advance of the whole guideline process. At least we know better what we are up against.
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I thought NICE had already redone some stuff in response to some of their spurious claims (and I think that was around criteria and PEM) wasn't that a previous delay. There argument doesn't seem very strong to me and they know the trial evidence is weak and so are relying on assertions that 'clinical experience' shows some people get better but they can't actually point to any evidence and as far as we know from the way clinics work they don't collect sufficient evidence to give them any justification for their claims.
 
Trish said:
It's a pretty tough call to get up to speed in 3 days.
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It is, of course, but NICE had already done the work for him. In great detail and with not inconsiderable expertise.

All he needs to assess is how likely it is that the NICE committee is made up of gullible idiots, and whether the objectors are actually presenting any scientific arguments. I'd be surprised if that took an experienced journalist three days.
 
I think NICE are probably being bombarded by professionals from at least 3 directions:

- the BPS researchers who can't bear their research being downgraded to very poor, with its impact on their personal reputations and future research funding.

- the Rehab specialists who refuse to believe exercise based rehab can be bad for anybody, and are gearing up to be the experts on long Covid too, and see this as a threat to that.

- the therapy organisations - OT's, physios and BACME who want to keep on doing what they do now.

All of whom also believe that they have specialist knowledge based on experience that enables them magically to know which patients will benefit and how to individualise treatment plans, and are so confident in this that they think their expertise is better than research evidence.

What a toxic mix.
 
Kitty said:
It is, of course, but NICE had already done the work for him. In great detail and with not inconsiderable expertise.

All he needs to assess is how likely it is that the NICE committee is made up of gullible idiots, and whether the objectors are actually presenting any scientific arguments.
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A NICE guideline recommends the use of acupuncture for chronic pain, suggesting there is strong evidence for efficacy.
NICE 2021 Chronic Pain guidelines rationale said:
Overall, the committee agreed that there was a large evidence base showing acupuncture to be clinically effective in the short term (3 months); the original economic modelling also showed it is likely to be cost effective.
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So, quick assumptions about the capability of a NICE committee to get things right, might be wrong.
 
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Adrian said:
If he had access to the final docs (with responses and comments) or even read the draft + all the evidence review pieces I suspect that could take quite a few days.
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Surely he'd only really need to read the draft, though. The story is about the response to it by a group of doctors and researchers, who're conspicuously few in number and employing familiar and not very sophisticated tactics. That alone ought to raise at least one eyebrow.
 
Hutan said:
So, quick assumptions about the capability of a NICE committee to get things right, might be wrong.
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But it presumably wasn't the result of them being bullied into submission by "action" carried out by "militant patients", and it was the result of a review of evidence. The evidence might be hopelessly weak and the conclusions might be unreliable as a result, but it's still a review process.

Those challenging the draft ME guidelines aren't bothering with either process or evidence, and that's the core of the story.
 
So it seems like the two main reasons behind the royal colleges objections are the diagnostic criteria and the use of the GRADE system. Those are terrible reasons. There are good reasons behind requiring PEM, and even if PEM wasn't required, it's likely NICE would have came to the same or a similar conclusion, since NICE has other reasons for its conclusions and downgrading.

The other reason is even worse - they don't want to use GRADE because it's hard to get good evidence in "complex" conditions. Well, that's the entire reason GRADE was created - so the evidence supporting treatments is good, and you don't just get to lower your standards as you see fit. That argument is strongly reflective of the one Turner-Stokes made in the BMJ: https://www.bmj.com/content/371/bmj.m4774, which basically boiled down to "GRADE doesn't give us the conclusion we want in this condition, therefore it's inappropriate to use".

In my view this pretty well confirms that the motivations of the Royal Colleges are highly unscientific and contrary to evidence based medicine. The second argument about GRADE is just beyond ridiculous, and shows that the Royal Colleges do indeed want to abandon any semblence of evidence based medicine, and are actively working against it. And in large part they're basically getting away with it.
 
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Sly Saint said:
None of the Royal Colleges contributed much to the initial draft Scope consultation........
apart from the Royal College of Psychiatrists that is who said

"
The choice of diagnostic criteria for ME/CFS should favour inclusivity
and clinical feasibility to ensure the guidance is of practical use for health
professionals and does not inadvertently exclude groups of patients."

https://www.nice.org.uk/guidance/gid-ng10091/documents/consultation-comments-and-responses-2
(had to laugh as when I opened it it still comes up as Schizophrenia Guideline.....maybe an omen)

eta: I thought this was supposed to be a guidelines for ME/CFS.......who are these 'groups of patients'
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One size fits all. It appears the Other Side still wants to lump in conditions like IBS, Fibromyalgia, and who know what else with ME, which will dilute and obscure the picture of this distinct disease. Something that seems to be an aim of this group.
 
rvallee said:
It's even worse, they changed the definition to "chronic fatigue", were told the whole time it was wrong and did it anyway. If anyone changed it it's the ones pushing to keep the invalid definition and rejecting the use of an accurate one.

Because this isn't insane enough as it is, the use of an accurate definition of a disease is now a point of "debate". Patients have explained to them endlessly that their obsession with fatigue wasn't just unhelpful, it's plain wrong.

Very disappointing of Chivers to just give them a platform and accept this nonsense as a valid justification. They rejected reality and substituted their own and now want to stick with their toy model instead of facing reality. What a disaster, now the very notion of correcting errors is basically "controversial".
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IMO the Other Side has not accepted correction from our community for a long time. If ever.

After all how could the lowly, crazy patients know what ails them? ;)
 
DokaGirl said:
If their theory is so perfect, why aren't they working with other devastating diseases? After all, everyone could be imaging their illness!
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Oh don't worry, they are expanding their remit as we speak. What will happen is that MUS (or whatever label it is trading under this month) will simply become an additional diagnosis on top of whatever real disease the patient has.
rvallee said:
Hard to do worse than bad and impertinent.
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Do you mean 'irrelevant'?
Trish said:
It's a pretty tough call to get up to speed in 3 days. I'm not surprised Tom Chivers is confused.
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Fair point. But in which case he needs to acknowledge that this requires a much deeper dive to comprehend the broader picture and the critical details in it.

All he has done at this point is demonstrate why the current model of journalism isn't working. There is a very good reason why solid investigative journalism takes a lot of time and resources.

Compare and contrast Chivers' attempt with Tuller's.

(To be clear, I am not criticising Chivers for journalism being in this situation. But he does need to acknowledge it.)
Kitty said:
Surely he'd only really need to read the draft, though. The story is about the response to it by a group of doctors and researchers, who're conspicuously few in number and employing familiar and not very sophisticated tactics. That alone ought to raise at least one eyebrow.
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Exactly. Where is the hard-nosed skepticism about self-serving claims from the powerful that journalists are supposedly famed for?
 
First, they both said, NICE created a new definition of the disease when producing the new guidelines.
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Rubbish. Requiring PEM is hardly 'new'.

The Canadian Consensus Criteria requires PEM and was published in 2003. The ICC also requires PEM and was first published in 2011. The IOM report was 2015.

A half-decent journalist could have discovered this in two minutes of searching the internet.
 
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