New PACE paper, more SMC spin.

[Jonathan Edwards]

"fear avoidance beliefs"

Is this a new phrase?

It should be 'fear-avoidance beliefs' from Lethem 1983 and Waddell 1993 (see Wikipedia). Without the hyphen it is incomprehensible, with it not much better. Even the explanation on WIkipedia is a confusion. These people do not actually have coherent ideas it seems. (Surprise?)

 

[A.B.]

It's not an irrational fear if the symptoms are real. If they suggest that the fear is irrational, this implies that the symptoms are not real.

I wonder how many patients actually feel fear when thinking about going for a brisk walk in the park or something like that. I sure don't. I just won't do it because I'm too fatigued.

 

[Roy S]

It should be 'fear-avoidance beliefs' from Lethem 1983 and Waddell 1993 (see Wikipedia). Without the hyphen it is incomprehensible, with it not much better. Even the explanation on WIkipedia is a confusion. These people do not actually have coherent ideas it seems. (Surprise?)

Thanks. My mistake- I should have used Google first. "fear avoidance beliefs chronic fatigue syndrome" yields relevant information including the present propaganda proliferation.

 

[biophile]

The idea that all patients in general, just need to get over their fears of exercise and they will improve or recover if they do more, is the most dangerous aspect of how the PACE results have been presented since 2011. In terms of activity levels, there is a disconnect between the lofty aims of therapy and the real world achievements of therapy. There seems to be a stubborn presumption that just because therapy is aimed at reinterpreting symptoms and encouraging patients to do more, then any modest improvement in self-reported measures is evidence that patients are doing more as a result. Lost in the misleading spin seems to be the issue of whether patients are actually doing more.

Yet CBT/GET trials have failed to demonstrate significant increases in fitness or physical activity. The PACE Trial demonstrated modest improvements to some self-reported measures for a small fraction of participants (net 11-16%) but a wide range of more objective measures failed to show (statistically and/or clinically) significant improvements.

All the talk of encouraging patients to do more doesn't actually make them do more, seemingly even the ones who report feeling better! Therefore, the conclusion that all patients just have to get over their fears and exercise more is misleading. If they aren't actually doing more, then something else seems to be going on: placebo response, reporting bias, and activity substitution come to mind. Perhaps some stress reduction (patients less fearful but not doing more?) I want to say that a slim minority might be increasing activity but there's no objective evidence published to show improvements in daily function.

Evidence shows a range of biological abnormalities on exercise testing which isn't accounted for by deconditioning and is correlated with post-exertional symptoms. The CBT/GET model does not acknowledge that post-exertional symptoms have any pathophysiological basis beyond deconditioning and stress etc. CBT/GET is being falsely presented as helping patients push through their self-imposed activity ceiling by challenging their supposedly irrational fears of activity.

PACE et al seem to have a "fear-avoidance" of objective outcome measures. At every opportunity they drop them, downplay them, spin their interpretation of null results, or come up with some (usually vastly overstated) caveat for them.

 

[chipmunk1]

let's face it. The typical phobia has a different illness presentation.

at least they are becoming more honest about the true nature of the syndrome.

I have said it before the generation of chalder and wesseley treated phobias with graded exposure therapy. now they state the key symptom is phobia/fear which needs to be overcome to get better.

Treatment is graded exercise therapy. Coincidence?

The physician has a whole bag of psychological tricks for dealing
with chronic psychosomatic illness, chronic somatization.
It is very important not to legitimate these toxic diagnoses,
and there is no doubt that multiple chemical sensitivity and
chronic fatigue syndrome are toxic diagnoses, because they
cause the patients to become fixated upon their symptoms
and to dig in even further so that they acquire a sense of
hopelessness.

Suppose a transcript of the proceedings here was
circulated among a group of patients who believe they
have toxic dental amalgam or suffer from multiple chemi-
cal sensitivity, it would be clear that the clinicians in this
audience would no longer get any patients.

so the psychological trick consists in renaming a psychotherapy to something that does not sound so much like a psychotherapy and lying to the media and public to get rid of a toxic diagnosis

 

[Jonathan Edwards]

I wonder if Dr Ben Goldacre would be prepared to comment on this example of Bad Science. It might put him in an uncomfortable position, but that is the test of true integrity.

 

[A.B.]

I wonder if Dr Ben Goldacre would be prepared to comment on this example of Bad Science. It might put him in an uncomfortable position, but that is the test of true integrity.

He seems to have been persuaded by the propaganda:

> How a small, vindictive community of CFS activists prevent discussion of the disease

https://twitter.com/bengoldacre/status/250137025615917057

 

[biophile]

I wonder if Dr Ben Goldacre would be prepared to comment on this example of Bad Science. It might put him in an uncomfortable position, but that is the test of true integrity.

You would have to point out very specific problems otherwise he would probably ignore you. No adequate placebo control, and the nature of how the therapies are presented or delivered, combined with emphasis on self-reported measures, present the obvious issue of reporting bias and the placebo response, but Goldacre seems to be a big believer in the placebo effect yielding real benefits, so the latter line of argument is probably a waste of time on him. I don't know how he would respond to the discrepancy between subjective and objective outcomes and the particularly poor outcomes of the latter. Goldacre has criticized clinical trials for changing their outcome definitions after the trial is over, which is exactly what PACE did.

Perhaps the worst of it was changing the recovery criteria thresholds, apparently after they already had a good idea of the distribution of various outcomes. The changes were poorly justified and in some cases bizarre e.g. the post-hoc normal range criteria for fatgue and physical function overlaps with their own criteria for severe disabling fatigue! All the other recovery criteria were significantly weakened too. They refuse to publish the recovery rates as defined in the protocol.

 

[Sidereal]

Regarding the effectiveness of these so-called treatments, the flat lines speak for themselves.

 

[chipmunk1]

problem solving in psychosomatics was always about blaming the patient. they have no other solution to offer nor have they learned anything else. the newspaper articles reflect this. the more they get in trouble the more they will try to blame the patient.

it is not that their studies werent properly done it is a small minority of militant individuals causing the problem.
if you avoid activity you have a phobia.
if you dont you make yourself ill.

 

[Marco]

I wonder if Dr Ben Goldacre would be prepared to comment on this example of Bad Science. It might put him in an uncomfortable position, but that is the test of true integrity.

I'm pretty sure he'd find a way to get over his discomfort.

 

[Bob]

So, for CBT, there were absolutely no objectively measured improvements:

Employment outcomes - no improvements.
Welfare benefit claims - no improvements.
Private insurance claims - no improvements.
Physical disability (6MWDT) - no improvements.
Fitness (step test) - no improvements.

Considering these outcomes, their 'fear' meditation hypothesis seems to be on slightly shaky ground.

Especially considering that CBT was designed specifically to address a fear-avoidance mechanism, but has clearly failed to 'reverse' the illness.

(Not much sign of a 'recovery' using these outcomes!)

 

[Dolphin]

While the spin isn't helping our position, the question is, how much is it hurting? Most people already believe this shit anyway.

It's painful, but it will blow over.

I'm afraid the way some of the media articles are written, it could convince some people that even though people with M.E. can't go out and exercise like normal people straight away, that is no reason CBT or GET can't help.

 

[Dolphin]

I'm pretty sure he'd find a way to get over his discomfort.

People have asked him before and he hasn't been interested. He works (or worked) with Simon Wessely and seems like he may have been influenced by him with regard to ME/CFS, etc.

 

[Scarecrow]

People have asked him before and he hasn't been interested. He works with Simon Wessely and seems like he may have been influenced by him with regard to ME/CFS, etc.

Do you have more information about his connection to Wessely?

 

[user9876]

I'm afraid the way some of the media articles are written, it could convince some people that even though people with M.E. can't go out and exercise like normal people straight away, that is no reason CBT or GET can't help.

I think it is worse than that. The media coverage could encourage people newly diagnosed with CFS to try to exercise their way better and get much worse.

 

[Roy S]

The Telegraph article has been altered to delete the first statement under the photo reiterating some of the disgusting 2011 propaganda campaign organized by the Science Media Centre blaming activists for harming research. Did anybody save that part?

This bit of [hogwash] is still the lead:

"People suffering from ME should get out of bed and exercise if they want to alleviate their condition, a major study by King's College has found."


My commiserations again go to those of you who have to live in the middle of this.

 

[user9876]

People have asked him before and he hasn't been interested. He works with Simon Wessely and seems like he may have been influenced by him with regard to ME/CFS, etc.

I think criticizing PACE doesn't fit with Goldacre's basic message which is money corrupts science (big phama and all that or alternative practitioners charging). I don't think I've ever read him talking about the idea that science is full of politics and people who don't know what they are doing even though it is.

 

[Snow Leopard]

With BG, you'd have to bait him first, eg tell him there is a non blinded study published in a top medical journal that is claiming large benefits, entirely on subjective measures, despite the key objective measures of that study suggesting a null result.

Only once he suggests he is concerned, would we be able to mention the study in question. Otherwise his personal biases will prevent him from being concerned.

 

[Marco]

People have asked him before and he hasn't been interested. He works with Simon Wessely and seems like he may have been influenced by him with regard to ME/CFS, etc.

Yep and his lack of interest spares him any discomfort that might ensue.