Peter White et al: Patient support group management recommendations vs medical textbooks and webs

[charles shepherd]

Peter White et al compare patient support group recommendations on the management of ME/CFS to what medical websites and textbooks recommend

Based on my visit to St Mary's Hospital Library a few weeks ago, where I added in a search through the ME/CFS entries in a range of current medical textbooks, a significant proportion of the ME/CFS entries are can be unbalanced, outdated and really quite depressing

Abstract:
http://www.jpsychores.com/article/S0022-3999(16)30349-X/abstract

Highlights

• •There were marked discrepancies between patient and professional sources' views on treatment recommendations.
• •Patient organisations preferentially recommended medicines, pacing and complementary treatments
• •Medical organisations recommended rehabilitation therapies

Abstract
Objectives
Chronic fatigue syndrome (CFS) is a controversial illness, with apparent disagreements between medical authorities and patient support organisations regarding safe and effective treatments. The aim of this study was to measure the extent of different views regarding treatments, comparing patient support organisations and medical authorities in the UK.

Methods
Two independent raters analysed two groups of resources: UK patient support websites and both medical websites and textbooks. A 5-point Likert scale was developed with the question ‘With what strength does the source recommend these treatments?’ The various treatments were divided into the following four groups: complementary and alternative medicine (CAM), pharmacological, rehabilitative, and pacing therapies.

Results
There were significant differences between the scores for patient support organisations and medical sources for all 4 treatment groups. The results for supporting CAM were 74% (patient group) vs 16% (medical source) (p < 0.001), 71% vs 42% for pharmacological (p = 0.01), 28% vs 94% for rehabilitative (p < 0.001) and 91% vs 50% for pacing treatments (p = 0.001).

Conclusions
There were substantially different treatment recommendations between patient support organisations and medical sources. Since expectations can determine response to treatment, these different views may reduce the engagement in and effectiveness of rehabilitative therapies recommended by national guidelines and supported by systematic reviews.

 

[Marky90]

This is ridiculous "research"

 

[Dechi]

On the contrary, I find it very interesting and not at all surprising !

 

[duncan]

"Since expectations can determine response..."

I can think of no branch of Science where this is accepted as appropriate.

 

[Keela Too]

Mind you it shows us exactly what we already know. Patients have little faith in the "rehabilitative therapies" on offer.

Hardly surprising as:

Patient surveys demonstrate these "rehabilitative therapies" can worsen symptoms and anecdotally we hear stories of severe relapse - so there is some good reason to listen to what patients say.

And of course we all know the problems with the PACE trial - which actually show these "rehabilitative therapies" are not actually causing any meaningful improvement even in those for whom they are supposed to work...

 

[AndyPR]

•There were marked discrepancies between patient and professional sources' views on treatment recommendations.

I'd certainly hope that any scientist worth his/her salt would query why this might be but I guess there are none so blind as the BPS crowd.

 

[Esther12]

There was that other 'research' White did on on patient support groups that was a clear hit-job...

here it is: http://www.ncbi.nlm.nih.gov/pubmed/23413406

Good to see there's a comment on pubmed from Tom Kindlon.

Discussion of that paper here: http://forums.phoenixrising.me/index.php?threads/paper-by-white-reviewed-by-wessely.21689/

 

[sarah darwins]

I'm currently watching the TV series The Path, about a cult that polices the thoughts of the faithful in much the same way. Honestly, when I watch that show I'm constantly reminded of White, the Crony-in-Chief, and his pals ...

[they fear] "their efforts will be thwarted by non-believers or Ignorant Systemites (I.S.) whose selfish actions will result in an apocalypse, and promises salvation for those who ascend The Ladder where they can live forever in The Garden." - Wiki on The Path

Guess we're Ignorant Systemites.

 

[Tom Kindlon]

There was that other 'research' White did on on patient support groups that was a clear hit-job...

here it is: http://www.ncbi.nlm.nih.gov/pubmed/23413406

Good to see there's a comment on pubmed from Tom Kindlon.

Discussion of that paper here: http://forums.phoenixrising.me/index.php?threads/paper-by-white-reviewed-by-wessely.21689/

Some people have previously told me they couldn't see PubMed Commons comments on their phones so here is the text:

ME/CFS Patient Organisations should be free to not promote CBT and GET for ME/CFS and the models underlying them

As somebody involved in running a myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patient organisation which might be seen to have been criticised by this paper, I would like to take the opportunity to respond.

The paper seems to be largely based on an appeal to authority. However, the history of medicine is replete with examples of situations where views on the aetiology and pathophysiology of conditions, and how they should be treated, particularly those that were psychologised, have changed over time. Moreover, there is actually little consensus within the field on the aetiology or pathophysiology of ME/CFS; there are many competing theories (1). Patient organisations should not be compelled to support a particular model for the illness that is the basis for the use of cognitive behaviour therapy (CBT) and graded exercise therapy (GET), or indeed, the therapies themselves. The authors may claim such therapies are safe but this is in dispute, with large percentages of patients reporting deteriorations in their overall health in patient surveys (1,2). Moreover, claims for the efficacy of such therapies are mainly based on subjective outcome measures in non-blinded studies so there are plenty of reasons to be sceptical of such claims (1-3).

The models underlying CBT and GET for ME/CFS may be described as "biopsychosocial" but are not equally "physical" and "psychological". They are based on the view that the symptoms and disability in the condition are reversible using these behavioural methods (4). This is distinctly different from many other conditions where these would be used as adjunctive therapies. I would venture that it is the proponents of such models (i.e. those underlying CBT and GET) who are out of step with the majority of the ME/CFS research community worldwide. For example, there are many studies which suggest the symptoms of the condition are not due to deconditioning (e.g. studies with sedentary controls) and I believe most would not accept the view that all the findings can simply be explained by deconditioning (1,2,5). In such circumstances, patient organisations should be entitled to make their own assessment of the evidence in its various forms rather than be compelled to follow any orthodoxy in a particular country.

References:

[1]. Kindlon T. Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Bulletin of the IACFS/ME. 2011;19:59-111.

[2]. Twisk FNM, Maes M. A review on Cognitive Behavorial Therapy (CBT) and Graded Exercise Therapy (GET) in Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS. Neuro Endocrinol Lett. 2009;30:284-299.

[3]. Kewley AJ. Does Cognitive Behavioral Therapy or Graded Exercise Therapy Reduce Disability in Chronic Fatigue Syndrome Patients? Objective Measures Are Necessary. Clinical Psychology: Science and Practice. 2013 20;3:321-322 DOI: 10.1111/cpsp.12042

[4]. PACE manuals for Cognitive Behaviour Therapy and Graded Exercise Therapy for CFS/ME. http://www.wolfson.qmul.ac.uk/current-projects/pace-trial/#trial-information (last accessed: July 24, 2016)

[5]. Snell CR, Stevens SR, Davenport TE, Van Ness JM. Discriminative Validity of Metabolic and Workload Measurements to Identify Individuals With Chronic Fatigue Syndrome. Phys Ther. 2013 Jun 27.

Conflict of Interest: I am the Assistant Chairperson and Information Officer of the Irish ME/CFS Association. All my work for the Association is unpaid.

I've just posted this on Facebook: https://www.facebook.com/notes/tom-...omote-cbt-and-get-for-mecfs-/1087929451301580

 

[alex3619]

"Since expectations can determine response..."

I can think of no branch of Science where this is accepted as appropriate.

That doesn't stop CBT/GET researchers using the bias from expectations to change attitudes and then measured by outcome surveys, despite a lack of objective evidence.

 

[Esther12]

"Since expectations can determine response..."

I can think of no branch of Science where this is accepted as appropriate.

That doesn't stop CBT/GET researchers using the bias from expectations to change attitudes and then measured by outcome surveys, despite a lack of objective evidence.

I expect their building for the paper which announces membership of a patient group was associated with worse outcomes in PACE. It's interesting stuff... and they were so close to getting away with it!

 

[Seven7]

At first I thought that that group was ignorant and believed their own crap but with all the physiological evidence and their insistence on ignoring it, there is something more going on.

If they were interested in saving face or reputations this would not be the attitude, they would stop and retire quietly. I say to dig to find out what is going on behind this insistence.

With the physio evidence, this insistence is bordering on crime against humanity.

 

[NL93]

these different views may reduce the engagement in and effectiveness of rehabilitativetherapies

Yes, because that's totally how it works. Rehabilitationtherapies are ineffective, because these ME folks think they are ineffective. Not because they are actually ineffective.

Chronicfatigue syndrome (CFS) is a controversial illness

Why would that be?

 

[SilverbladeTE]

I hope I live long enough to see White, Sharp, Wessely etc's work trashed, reviled and treated in text books as examples of the worst, arrogant, stupid, vicious, cowardly abuse, barbarism and utter negligence of the late 20th and early 21st centuries medical treatment, research and behaviour towards terribly sick and suffering innocent patients.
an example for centuries to come of how NOT to behave and their names reviled for ever more.

but maybe that's just me.....

 

[TiredSam]

these different views may reduce the engagement in and effectiveness of rehabilitative therapies recommended by national guidelines ...

The effectiveness of their rehabilative therapies can be reduced still further? How would that work exactly? Oh, let me guess, when it's the fault of patients and their organisations.

... and supported by systematic reviews.

Omitting to mention that it's these quacktards who are systematically reviewing their own work.

 

[A.B.]

Ironically the conclusion could be interpreted as admission that their therapies rely on the placebo effect to create the illusion of being useful.

Unfortunately this group has done a lot of damage by portraying ME/CFS as mental disorder. They have no respect for patients and only care about advancing their careers. A person reading their material will come away with the wrong picture of the illness, which can have negative consequences for patients.

White et. al. represent a type of predatory pseudoscience, claiming poorly understood illnesses as their own to advance their careers and protect financial interests of certain organizations.

 

[Sean]

Chronic fatigue syndrome (CFS) is a controversial illness, with apparent disagreements between medical authorities and patient support organisations regarding safe and effective treatments.

Typical of their spin. Just like their endless – and totally unjustified – characterisation of patients' health problems as being all due to patients' pathological 'perceptions'. By simple unyielding repetition, and numerical weight of largely content-free papers, they have conned most of the medical profession and world into going along with this very convenient and brutal little fairy tale.

Gotta hand it to them, to be able to get so far on so little requires a genuine mastery of the art of propaganda and political manipulation. They are some of the most influential people in this world, inflicting serious suffering upon millions, on the basis of... what?

If PACE proved anything it was that their psycho-behavioural model is a bunch of crap. Yet these arseholes still prosper, and rule over our lives.

 

[Jonathan Edwards]

Ironically the conclusion could be interpreted as admission that their therapies rely on the placebo effect to create the illusion of being useful.

Unfortunately this group has done a lot of damage by portraying ME/CFS as mental disorder. They have no respect for patients and only care about advancing their careers. A person reading their material will come away with the wrong picture of the illness, which can have negative consequences for patients.

White et. al. represent a type of predatory pseudoscience, claiming poorly understood illnesses as their own to advance their careers and protect financial interests of certain organizations.

Precisely.

A corner stone of the justification of the PACE results was the claim that expectation was very unlikely to determine response. Now they seem to think it might.

This seems to be another classic piece of 'psychosomatic research' - research in the minds of the authors. There are so many ridiculous errors I cannot be bothered to start analysing. (The idea of getting p values out of these data is barmy. Complementary therapies are defined as those not found in textbooks - dohh...) These people are making a laughing stock of their own profession.

 

[Chrisb]

These people are making a laughing stock of their own profession.

It should never be forgotten that "profess" and "profession" are highly adaptable words. For "profess" my dictionary includes:-to claim (often insincerely), to have a feeling of, to pretend to, to claim to be an expert in.

That covers most of the psychosomatic school.

This always rather troubled me about joining a profession.

 

[Woolie]

These are the researchers who were so worried a few years ago about being thwarted from their worthy research goals because of threats and abuse from patients. It is so reassuring to see them battle on with their noble goals despite these terrible conditions.

Keep fighting the good fight, White et al! Remember, if you can't win on argument and evidence, you can just flood the world with large numbers of low quality publications that promote your beliefs... in outlets with little or no quality standards. That way, you can just outshout your opponents!

And more opportunities for self-citations too - excellent for creating the impression that virtually all the research in this area supports your view! Well done!