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

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Jul 24, 2016.

  1. charles shepherd

    charles shepherd Senior Member

    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entries in a range of current medical textbooks, a significant proportion of the ME/CFS entries are can be unbalanced, outdated and really quite depressing



    • •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

    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.

    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.

    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).

    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.
    JaimeS, Sea, Simon and 14 others like this.
  2. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

    This is ridiculous "research"
  3. Dechi

    Dechi Senior Member

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

    duncan Senior Member

    "Since expectations can determine response..."

    I can think of no branch of Science where this is accepted as appropriate.
    BurnA, JaimeS, Sea and 14 others like this.
  5. Keela Too

    Keela Too Sally Burch

    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...
    Last edited: Jul 24, 2016
    JaimeS, Sea, barbc56 and 12 others like this.
  6. AndyPR

    AndyPR Senior Member

    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.
    moosie, Bob, Hutan and 5 others like this.
  7. Esther12

    Esther12 Senior Member

    Solstice, Daisymay, Hutan and 7 others like this.
  8. sarah darwins

    sarah darwins I told you I was ill

    Cornwall, UK
    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.
    actup likes this.
  9. Tom Kindlon

    Tom Kindlon Senior Member

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

    I've just posted this on Facebook:
    matt3n, Sea, Daisymay and 19 others like this.
  10. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    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.
    Solstice, MEMum, Bob and 5 others like this.
  11. Esther12

    Esther12 Senior Member

    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!
    Webdog, Valentijn and Woolie like this.
  12. lnester7

    lnester7 Seven

    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.
    Sea, Solstice, Webdog and 6 others like this.
  13. NL93

    NL93 Senior Member

    The Netherlands
    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.

    Why would that be? o_O
    Sea, MEMum and Bob like this.
  14. SilverbladeTE

    SilverbladeTE Senior Member

    Somewhere near Glasgow, Scotland
    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.....
    Inara, Sea, meandthecat and 17 others like this.
  15. TiredSam

    TiredSam The wise nematode hibernates

    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.

    Omitting to mention that it's these quacktards who are systematically reviewing their own work.
    JaimeS, Sea, barbc56 and 9 others like this.
  16. A.B.

    A.B. Senior Member

    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.
    Last edited: Jul 25, 2016
    Inara, matt3n, JaimeS and 17 others like this.
  17. Sean

    Sean Senior Member

    :bang-head: :ill: :grumpy:

    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.
    Last edited: Jul 25, 2016
    JaimeS, WillowTree, Daisymay and 8 others like this.
  18. Jonathan Edwards

    Jonathan Edwards "Gibberish"


    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.
    Inara, matt3n, BurnA and 20 others like this.
  19. Chrisb

    Chrisb Senior Member

    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.
    TiredSam likes this.
  20. Woolie

    Woolie Senior Member

    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!
    Last edited: Jul 25, 2016
    Inara, BurnA, JaimeS and 15 others like this.

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