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

Trish said:
I think this argument Chivers has published makes it pretty clear that a large part of the problem the individuals who spoke to him complain about is that they are angry that their own research has been judged by NICE as very low quality. That has repercussions for all their research, not just PACE, and not just ME/CFS.
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That seems the important point and the reason why the final guidelines should be made public. They will want to dilute the effects of that apparent agreement.
 
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'
 
Esther12 said:
His second piece fails to provide the legitimate responses that can be given to the points raised there but he does say "I am not endorsing any of what was said above".
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I agree that it's very important that Chivers wrote he didn't endorse the views he shared in his follow-up, even though I share others' disappointment that he did not dig deeper and did not confront the input he got now against the input he got before.

I wonder why it is so hard to understand the points made by Chris Ponting and Jonathan Edwards which he even quoted and seemed to endorse?

Edited to remove muddled sentence.
 
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Tom Chivers:
Okay, I just spent three days interviewing scientists, clinicians and patients about ME/CFS treatments. They all disagree enormously. It's a hugely contentious issue and the facts are disputed. Is CBT/GET therapy valid? Is the research? What "window" am I meant to look out of?"

"I gave it my best shot: I took a position. I'm well informed and have excellent contacts. But there isn't a window. There are just experts and data, both of which are fallible and hard to read.
 
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What window should he use to look at this debate? Well, since NICE guidelines exist to improve the care of patients and patients are the ones suffering, I would suggest the appropriate window to view the situation from is that of the people who suffer from ME/CFS (probably their bedroom one).
 
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Stewart said:
"They suggested that the NICE GRADE system was badly designed for complex problems like ME/CFS."

As I understand it, GRADE is considered to be *the* international standard when it comes to rating quality of evidence. The suggestion that it should be disregarded when it comes to ME/CFS trials is staggering in its arrogance.
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This is a quote from Lynne Turner-Stokes. Which emphasises just how muddled everything, and Tom, is.

GRADE is crap, just as Lynne says, but for quite different reasons - as I explained in my Rapid Response to her BMJ editorial (I think). So nothing arrogant here, just manipulative. We know GRADE is crap - it is explained in excellent papers in the literature why it is. It runs contrary to how theory of reliability actually works. It was invited by the EBM people in McMaster who do not have a reputation for getting things very right.
 
Dx Revision Watch said:
But you would be correct in saying that none of the feedback submitted in the November 2020 draft consultation period was made public, because stakeholder feedback and NICE's responses to feedback aren't scheduled to be posted until after the finalised guideline has been published. So I feel this is a tad disingenuous of Chivers - unless he simply does not understand the timeline for the posting of stakeholder comments and NICE responses to comments.
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And they can simply publish their reasons themselves, which others have done. Although I think that's what he was pointing out, just not clearly enough, that all we have is their word for it until they either make their reasons public or NICE does.

Because their concerns apply to the draft released last year, it hasn't materially changed since. From the few limited public comments, it frankly seems that they expected to manipulate the process behind the scenes and did not put much effort into the process.
 
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Trish said:
I think this argument Chivers has published makes it pretty clear that a large part of the problem the individuals who spoke to him complain about is that they are angry that their own research has been judged by NICE as very low quality. That has repercussions for all their research, not just PACE, and not just ME/CFS.
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That's really what most of this is about. Their evidence has been downgraded by a combination of 1) being methodologically flawed and 2) not even taking into account the actual definition of the disease. So it's both 1) bad and 2) not even about ME. Hard to do worse than bad and impertinent. But since to them ME = generic "chronic fatigue" they can't even process this as a problem. This really needs to be put into proper context: it's not that they disagree with it, they literally don't understand that they are not the same concept and why there is a problem at all.

That's the biggest harm to the sausage factory: it jeopardizes all of it, all the way to the formulaic methodology they have used for years. It affects the whole enterprise, this goes far beyond just us, all the way to IAPT, almost all of evidence-based medicine, the very concept of psychosomatic medicine and lots and lots of money poured into this, resulting in thousands of careers that are effectively as relevant to health care as being a specialist in applied phrenology.
 
Since I wrote it, two people with some knowledge of the internal workings of both NICE and the Royal Colleges got in touch. They’re experts in relevant fields, and I know them both and trust them, so I thought I’d try to express the points they made.
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If that's investigative journalism ...
It's a hugely contentious issue and the facts are disputed.
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Yes, that's why it's crying out for a decent investigative journalist to get to the bottom of it.
I'm well informed and have excellent contacts.
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How do you know?
There are just experts and data, both of which are fallible and hard to read
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So what is it exactly that you do Tom?

Jesus, the guy looks at it for 3 days, shrugs and gives up. And that's his "best shot". Bye then Tom. Thanks.
 
Trish said:
We have to be realistic with journalists, I think. They have a living to earn, and if they are only paid for 3 days work on a subject, that's all they can do. I think investigative journalism where someone spends weeks or months on a topic is pretty rare these days.
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How do we know he was paid 3 days to work on it? I have a living to earn, and I've spent more than 3 days unpaid preparing for things in the past, it's a question of how much pride you take in your work, whether you can be arsed doing a proper job. I loved his first article, but this second one was just lazy, it reads as if it's written by someone who's totally overwhelmed and can't be bothered any more. "I gave it my best shot" sounds like goodbye to me, and I wouldn't be surprised if he'll now be saying to people - "M.E.? Don't go near it, absolute nightmare".

It's the sheer laziness of the second article which annoys me. I'm freelance and nobody pays me to prepare anything, but I prepare thoroughly anyway, because if I do a bad job I don't get asked back. I certainly don't go whining that I only gave myself 3 days to prepare for a complex task I'd taken on and now it's all too much for me. I spent 4 days totally rearranging my office and learning various software to teach online at the start of the pandemic, nobody paid me and I didn't go whining about it. He's just passed on a load of stuff somebody told him before washing his hands of the matter, leaving others to clean up the mess he's made with his inaccurate reporting.
 
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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.
 
I agree the second article is not investigative journalism, it's just reporting what someone told him, and seeming to accept it as fact without bothering to check with anyone else.
And I agree lots of us do far more than the hours we're paid for. As a teacher I certainly did. Maybe he was only paid for 1 day and the other 2 were on his own time.
 
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