United Kingdom: Science Media Centre (including Fiona Fox)

Jon stones use of CBT in MS to justify it is silly, they have different response to activity and exertion, the MS society Facebook is full of threads on the benefits of exercise. And often when CBT is used for fatigue in other illness it is unfortunately based on the bps model and being used because the fatigue is still medically unexplained. So they might not be suggesting pediatric MS, cancers or kidney disease are psychological but they do assert psychological behavioural factors sometimes causing the fatigue to a degree and being modifiable.
 
Cheshire said:
Well, that is a lie, because the type of CBT tested in the PACE trial has nothing to do with the CBT that helps people coping when suffering from other illnesses.

From their protocol:

CBT will be based on the illness model of fear avoidance, used in the three positive trials of CBT [18, 25, 26]. There are three essential elements: (a) Assessment of illness beliefs and coping strategies, (b) structuring of daily rest, sleep and activity, to establish a stable baseline of general activities, with a graduated return to normal activity, (c) collaborative challenging of unhelpful beliefs about symptoms and activity. Both therapists and participants will receive separate manuals.
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We must fight against this normalisation of their CBT, try to prevent them from sweeping the false illness belief (which seems now very embarrassing) under the carpet, because that was their number one aim, and the major element of the therapy.
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I (still) think that in combating it, it is worth pointing out that it is a CBT based on a phobic model, not on a coping/adjusting model. The GET therapy is the same as Graded Exposure Therapy, and the CBT also. (In fact the CBT and GET are ultimately the same therapy, just delivered in slightly different ways.)
 
Classic tactics - defect our views to a strawman about debate about whether CFS is psychological or not. This debate is of course irrelevant.

Patients don't much care about philosophy. We don't debate mind-body dualism as it is not relevant. We care about whether a treatment works. If this treatment worked, it would be very popular. The SMC forgets to mention that the study was not blinded and had no meaningful changes on objective outcomes (like all other studies in the field which are criticised for the same reason).

Unblinded & subjective outcomes = junk science. Just like all the other junk alt-med studies that have findings that simply fall apart with blinding or meaningful objective outcomes.
 
Cinders66 said:
Jon stones use of CBT in MS to justify it is silly, they have different response to activity and exertion, the MS society Facebook is full of threads on the benefits of exercise. And often when CBT is used for fatigue in other illness it is unfortunately based on the bps model and being used because the fatigue is still medically unexplained. So they might not be suggesting pediatric MS, cancers or kidney disease are psychological but they do assert psychological behavioural factors sometimes causing the fatigue to a degree and being modifiable.
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Also in comparing ME and MS we are not talking about evaluating the two "raw" diseases. MS has actual drug therapy treatments of which the purpose is to allow for the fullest possible potential of functioning in the disease which in turn is aimed at enabling exertion to provide a normal as possible life.

Also I wouldn't trust in blind faith any of the MS CBT claims or study conclusions anyway knowing what we know now and considering people like Rona Ross Morris are deeply ingrained in MS CBT. As we know, CBT however one uses, it is designed to change the response to questions not necessarily the obective facts.
 
Indigophoton said:
I think that's true, but as far as the newspapers etc go, we need to counter with a better story, and that isn't the math/science because the average reader response would be to glaze over.

We need the story of PACE as a medical health scandal to capture attention in the short term (and a breakthrough that is compelling for the general reader in pointing to ME being biomedical in the longer term) to really shift the narrative heard by the public.
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I agree. I think that there are many different parties that need convincing and different narratives convince different people. And while ideally you'd hope that scientific arguments would convince all the health professionals, in practice, they're human too, and some will have their minds changed by non-science-based arguments. Likewise some members of the public will be unmoved by write-ups about very severe patients or financial aspects, but be swayed by a report on a study like Wilshire and co's reanalysis. For me, it's the health professionals' minds that are most important to change here but I get that some would disagree.

I do think that in the making of all of those different arguments, it is really important that the message that CBT and GET are not effective for ME and/or CFS is made again and again and again. On a day to day basis patients are still being referred for them, and seeking them out themselves, because of the faulty effectiveness belief.
 
The Science Media Centre should not be seen as authoritative science organisation -- or a serious organisation at all. It is one of the many supposedly neutral-sounding bodies that are the product of the degeneration and disintegration of a once left-wing organisation, the Revolutionary Communist Party (in Britain, no relation to the US-based group still running under that name) that gave up on itself some 20 years ago, and has since become a peculiar right-wing quasi-libertarian think-tank called Spiked On-Line. Why any proper scientists wish to be associated with it can only be ascribed to ignorance on their part or the desire to get their names at any cost into the media. Read more about them here and here: you will note how the same names keep reappearing from one organisation to another.

Following the methodology of the old political group, the SMC and all the other groups in and around Spiked like to be 'edgy' and 'controversial', and which usually means putting forward a line that -- very peculiarly -- usually ends up aligning with the most rapacious ends of big-business. Why SMC has decided to throw its lot in the Wesselyans on ME/CFS is, however, a bit of a mystery to me.
 
Dr_Paul said:
Following the methodology of the old political group, the SMC and all the other groups in and around Spiked like to be 'edgy' and 'controversial', and which usually means putting forward a line that -- very peculiarly -- usually ends up aligning with the most rapacious ends of big-business. Why SMC has decided to throw its lot in the Wesselyans on ME/CFS is, however, a bit of a mystery to me.
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The SMC decided to throw its lot in with the BPS school because the RCP/Living Marxism and various manifestations are a cult of personality built around Frank Furedi. He believes that 'Risk Management' is a threat to freedom as it involves telling people that things are risky/dangerous. Telling people that things are risky and or dangerous is seen as a sign of authoritarian paternalism. The fact that they don't follow their own theory when crossing the road never occurs to them.

This manifests itself in their enthusiasm for unregulated corporate activity, and their hatred for the precautionary principle being invoked.

Mix this in with their decades long mission to be obnoxious, sectarian (everyone else is wrong, always) perfomative contrarianism, and you see the results.
 
Robert McMullen@RobertHMcMullen

If any truly independent mainstream scientist is willing to defend the #PACEtrial as "good quality" science, please reply to this tweet and I will donate £100 to a charity of your choice. http://www.sciencemediacentre.org/cfsme-the-illness-and-the-controversy/ …

4:50 PM - Mar 21, 2018

Let me up that to £500. But to qualify, the truly independent mainstream scientist will have to explain to me how an open label study of telling patients to think they are better with a subjective endpoint of patients saying they think they are better qualifies as good quality science.
 
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Jonathan Edwards said:
Robert McMullen@RobertHMcMullen

If any truly independent mainstream scientist is willing to defend the #PACEtrial as "good quality" science, please reply to this tweet and I will donate £100 to a charity of your choice. http://www.sciencemediacentre.org/cfsme-the-illness-and-the-controversy/ …

4:50 PM - Mar 21, 2018

Let me up that to £500. But to qualify, the truly independent mainstream scientist will have to explain to me how an open label study of telling patients to think they are better with a subjective endpoint of patients saying they think they are better qualifies as good quality science.
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Also worth a new thread, IMO. :)

Why not write in to the papers with that offer, @Jonathan Edwards? Very effective bit of advocacy.
 
Luther Blissett said:
The SMC decided to throw its lot in with the BPS school because the RCP/Living Marxism and various manifestations are a cult of personality built around Frank Furedi. He believes that 'Risk Management' is a threat to freedom as it involves telling people that things are risky/dangerous. Telling people that things are risky and or dangerous is seen as a sign of authoritarian paternalism. The fact that they don't follow their own theory when crossing the road never occurs to them. This manifests itself in their enthusiasm for unregulated corporate activity, and their hatred for the precautionary principle being invoked. Mix this in with their decades long mission to be obnoxious, sectarian (everyone else is wrong, always) perfomative contrarianism, and you see the results.
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I agree with this, and, my being an RCP supporter in the 1980s, I know all too well the methodology and the behaviour of the old party -- the constant quest to be different, the contrarianism, the 100 per cent certainty, the black-and-white and no grey areas in between approach, all of which I found rather tiresome at the time -- and how this has remained unchanged despite a huge shift in direction into an ill-defined quasi-libertarianism (my own take is that Frank Füredi lost his political confidence and bearings in the early 1990s as his group disintegrated, and the remnants who didn't walk away followed him dutifully into a morass of confusion, but let's not digress).

Yet this doesn't explain their allegiance to the Wesselyan school. One thing about the old RCP was the emphasis upon science and technology: a very Promethean approach which, when the confines of Marxist politics were abandoned 20 years back, was allowed full range, hence the hostility to regulation, the softness towards climate-change denial and the idea that technology can solve climate-related problems, etc. So why is a scientific approach eschewed for ME/CFS, and instead of siding with those looking for a material cause of the illness do they prefer to cheer-lead those who disparage and belittle scientific investigation into it? To answer my own question to some extent, there is a remarkable degree of caprice with my old chums. I've noticed that our 'libertarians' are (amongst other things) opposed to reducing the voting age in the UK to 16, are opposed to gay marriage in Ireland, and are opposed to assisted suicide, all of which fly in the face of any recognisable brand of libertarian thought. So perhaps it's that old trait of 'being different' -- the evidence increasingly goes towards proving that ME/CFS is a neurological matter, so, hey!, let's say the opposite. Most of the time what Spiked and its satellites say have little impact upon the world, they're noisy but harmless; here, however, they're playing a part in helping make life difficult for a quarter of a million people by assisting the Wesselyans and their erroneous theories about ME/CFS.
 
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Jonathan Edwards said:
Let me up that to £500. But to qualify, the truly independent mainstream scientist will have to explain to me how an open label study of telling patients to think they are better with a subjective endpoint of patients saying they think they are better qualifies as good quality science.
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This is a great idea.

I wonder if we should / could up the figure to get more publicity.

Something akin to this:

http://www.wired.co.uk/article/homeopathy-challenge
 
One of the assertions of this reanalysis, that treatment effects seen may simply be the result of unblinded self-report measures, would not explain why patients undergoing adaptive pacing therapy (APT) did worse than those receiving CBT and GET in the original study who were also unblinded to therapy. It is disappointing that the pacing therapy data was not reanalysed as part of this study.
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Also Jon Stone above conveniently doesn’t mention, as detailed in the reanalysis paper, that only the CBT and GET manuals stressed how effective these two treatments supposedly were ramping up the bias for CBT and GET over APT.
 
Snow Leopard said:
Patients don't much care about philosophy. We don't debate mind-body dualism as it is not relevant. We care about whether a treatment works. If this treatment worked, it would be very popular.
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Effective treatments basically sell themselves.

Vaccines became hugely popular when parents saw how many vaccinated children weren't dying. (And started becoming unpopular a couple of generations later when parents were not seeing how many unvaccinated children were dying, because vaccines had been so successful in controlling those diseases.)
 
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