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

chrisb said:
@Sly Saint thanks for that. So they are saying they don't like inclusion of a core feature. It doesn't seem right to regard that as a change of definition.
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I think it poses a bit of a problem for all the fatigue clinics (and those doing 'research') as they would have to now differentiate between ME/CFS and ideopathic 'chronic fatigue' before prescribing treatment.

But then one could argue that as supposed ME/CFS 'experts' they should have been doing this all along.
 
@Arvo

I too have thought about the BPS avoidance of "treating" pw severe ME. Perhaps
this avoidance is due to the belief this model would harm the severely affected. In which case, they are not confident their "treatment" is entirely safe.

Or, is it more a case of optics. Not looking good, kind and caring to drag bedbound people, possibly on feeding tubes, out of bed to do GET. Maybe this is just a step too far.
 
Tom Chivers writes:

They suggested that the NICE GRADE system was badly designed for complex problems like ME/CFS. And they put all that in some long feedback, which, they say, was not then reflected in the final document.

And none of this feedback was made public.
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This has probably already been mention: stakeholder comments and NICE's responses to stakeholder comments are scheduled to be posted on the NICE guideline Project Documents page shortly after the finalised guideline is published, as they were with CG53 (2007).

If Chivers is referring to Royal Colleges' comments on the public draft that was released in November (as opposed to comments possible submitted since then and outside the stakeholder comment period) - was there any reason why they could not have published their responses, themselves?
 
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I think Tom Chivers has been used in the position of "useful idiot" by his unnamed sources.

In political jargon, a useful idiot is a derogatory term for a person perceived as propagandizing for a cause without fully comprehending the cause's goals, and who is cynically used by the cause's leaders.
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In this case the people using him are those representing the Royal Colleges.

From the unherd article :

First, they both said, NICE created a new definition of the disease when producing the new guidelines.
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The only thing about a new definition I can come up with is that the people supporting BPS and GET/CBT really haven't accepted what patients have been telling them for years i.e. the biggest problem in ME/CFS is PEM, but there are many other symptoms as well. Some people may suffer from fatigue as well, but not everybody. But the BPS and GET/CBT crew all insist that the main problem is fatigue, and develop all their beliefs on that premise.
 
Re-reading Tom's latest article, I was struck by this sentence:

"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.
 
Arnie Pye said:
I think Tom Chivers has been used in the position of "useful idiot" by his unnamed sources.



In this case the people using him are those representing the Royal Colleges.

From the unherd article :



The only thing about a new definition I can come up with is that the people supporting BPS and GET/CBT really haven't accepted what patients have been telling them for years i.e. the biggest problem in ME/CFS is PEM, but there are many other symptoms as well. Some people may suffer from fatigue as well, but not everybody. But the BPS and GET/CBT crew all insist that the main problem is fatigue, and develop all their beliefs on that premise.
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Even for just fatigue CBT/GET has been shown to have no effect though.
 
Maybe some people are underestimating what a mess things are, and how poorly designed NICE is to deal with a lot of the problems that surround ME/CFS? If Chivers doesn't know all of the details (and it would be very surprising if he did) I can see why many of the points made to him would seem pretty reasonable, so I can see why he would want to have that noted. 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".

We have another example of problems being caused by patients making strong claims on social media - it clearly puts off a lot of journalists and academics: "I’ve even had people tell me it was “fraudulent”."
 
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Solstice said:
Even for just fatigue CBT/GET has been shown to have no effect though.
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Exactly.

It doesn't matter what the hypothesis is for the trigger.

It doesn't matter what the hypothesis is for why some people recover from a virus and others don't.

It doesn't matter what definition of ME you use.

GET and directive CBT do not work. It really is that simple.

Edit - missed word
 
Stewart said:
Re-reading Tom's latest article, I was struck by this sentence:

"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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As I've mentioned on another thread where this argument was made - the authors of said argument had argued against this point when it came to nutrition studies (as a reply to yet another set of authors who wanted to make their own GRADE system for nutritional science as using GRADE would certainly mark most of nutritional science as low/very low quality).

The point that CBT/GET doesn't help even in Oxford studies is a great one @Trish , and one I wish certain researchers could at least try to reply to..
 
I should add that I somewhat misrepresented the PACE trial. I said it was CBT/GET vs standard medical care, where in fact there were four arms: standard medical care, CBT, GET, and “adaptive pacing therapy”: that is, planning and limiting your activity according to the restrictions of your disease. Pacing was the ME/CFS patients’ groups preferred method, but it showed no better outcome than standard care. I don’t think it materially changes any of my conclusions, but it is interesting that any bias in favour of CBT/GET didn’t show for pacing therapy. Also, it’s probably relevant that GET didn’t seem to have any worse side-effects than the other therapies, at least in this trial.
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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?
 
chrisb said:
@Sly Saint thanks for that. So they are saying they don't like inclusion of a core feature. It doesn't seem right to regard that as a change of definition.
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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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Stewart said:
Re-reading Tom's latest article, I was struck by this sentence:

"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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And if Grade is not designed for complex problems, then what use is it? Which parts of medicine are simple? It's used all over, including for diseases like cancer. Is cancer a simple problem? Obviously not. What this means of course is in circumstances where the science hasn't produced a breakthrough. Which is true, evidence-based medicine without science is essentially useless, this makes the point as good as anything can. In itself it's fully unreliable.

The thing about careless arguments is that they're worth exactly as much as the effort put into uttering them: none.
 
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rvallee said:
And if Grade is not designed for complex problems, then what use is it? Which parts of medicine are simple? It's used all over, including for diseases like cancer. Is cancer a simple problem? Obviously not. What this means of course is in circumstances where the science hasn't produced a breakthrough. Which is true, evidence-based medicine without science is essentially useless, this makes the point as good as anything can.

The thing about careless arguments is that they're worth exactly as much as the effort put into uttering them: none.
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I do remember being told by one of my lecturers (in nutrition) that you judge a piece by who wrote it. GRADE was not part of the discussion :P
 
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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Yeah that one is especially annoying. But I don't see how someone like Chivers could know the difference. I've seen comments over the years clearly confused that PACE was a trial of pacing. Because of the name. Ugh.

But it almost sounds crazy to argue, that Adaptive Pacing Therapy is not about pacing, is in fact so distorted from actual pacing it's invalid. Which is true, but damn is it reflective of the mess the BPS ideologues have made with their unlimited freedom to use the worst Orwellian deceits.
 
DokaGirl said:
@Arvo

I too have thought about the BPS avoidance of "treating" pw severe ME. Perhaps
this avoidance is due to the belief this model would harm the severely affected. In which case, they are not confident their "treatment" is entirely safe.

Or, is it more a case of optics. Not looking good, kind and caring to drag bedbound people, possibly on feeding tubes, out of bed to do GET. Maybe this is just a step too far.
Click to expand...

The end goal always is and always has been to sell the CBT product as a viable treatment option. A lot of theater (creating the Oxford criteria under which they could do their research, so CDC CFS became in essence CF and included psychiatric disorders, "researching" patient groups to point out psychiatric disorders which were candidate for psychiatric intervention and then doing flawed studies to prove CBT worked) and manipulation has gone into keeping up the illusion. Severe patients puncture the hot air balloon, as seen with the FINE trial. They themselves stay away from them just as they stay away from actual biomedical research finds.

Although, like I said, one of their dutch counterparts insinuated severe ME patients are just more stubborn in refusing the treatment that he so kindheartedly has to offer. (Or claims he has them playing tennis twice a week within 6 months.) Don't know if he ever actually looked at severe ME though, I doubt that.
 
Tom Chivers writes:

They suggested that the NICE GRADE system was badly designed for complex problems like ME/CFS. And they put all that in some long feedback, which, they say, was not then reflected in the final document.

And none of this feedback was made public.
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Meant to add in my previous post that his: "And they put all that in some long feedback, which, they say, was not then reflected in the final document. And none of this feedback was made public."

might be read as implying that NICE had an agenda in holding back their feedback.

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.

If some orgs and bodies chose to place their own responses to the November consultation in the public domain, in the interests of transparency, then so could the whinging Royal Colleges. I've raised this point with Chivers on Twitter.
 
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Didn't they also complain about the 2007 NICE guideline definition as being too strict? I seem to remember reading that although I'm too ill at the moment to try to go through the stakeholder comments to find the references. I think NICE's response was that they used the 2002 CMO document to define 'CFS/ME' for that guideline.
 
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.
 
Arvo said:
The end goal always is and always has been to sell the CBT product as a viable treatment option. A lot of theater (creating the Oxford criteria under which they could do their research, so CDC CFS became in essence CF and included psychiatric disorders, "researching" patient groups to point out psychiatric disorders which were candidate for psychiatric intervention and then doing flawed studies to prove CBT worked) and manipulation has gone into keeping up the illusion. Severe patients puncture the hot air balloon, as seen with the FINE trial. They themselves stay away from them just as they stay away from actual biomedical research finds.

Although, like I said, one of their dutch counterparts insinuated severe ME patients are just more stubborn in refusing the treatment that he so kindheartedly has to offer. (Or claims he has them playing tennis twice a week within 6 months.) Don't know if he ever actually looked at severe ME though, I doubt that.
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Exactly.

We know the Oxford criteria are so vague, many people, including healthy people could be included in the CF category.

For example, a very fit, healthy person who had fatigue for well over 6 months. Their hemoglobin was fine. Their ferritin was very significantly low. Despite this fatigue they carried on with vigorous exercise.

Imagine this very active, healthy person being told they have false illness beliefs, and being shunted into CBT and GET. Ridiculous. For one thing, they were already doing several hours/week of vigorous exercise, and secondly, what they needed was iron supplementation.

However, this person's symptoms remained a medical mystery for several months.

I'm going to look up the FINE trial again. ME memory fails me here..

About stubborn pw severe ME, these health care workers avoid other illnesses where people are bed ridden. 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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