Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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GETSET (white) in Lancet 22/06/17

Discussion in 'Latest ME/CFS Research' started by Esther12, Jun 22, 2017.

  1. Snow Leopard

    Snow Leopard Hibernating

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    There were 641 patients, 'Intention-To-Treat'. Some dropped out early/were not treated, or withdrew consent. ref: The Lancet
     
    Last edited: Jul 8, 2017
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  2. Dolphin

    Dolphin Senior Member

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    For anyone who doesn't know about this and is interested in the 6-minute walking test, this paper may be of interest:
     
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  3. Barry53

    Barry53 Senior Member

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    Although this is a GETSET thread, it shares much of the same baloney as for PACE, so pretty relevant still.
     
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  4. Barry53

    Barry53 Senior Member

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    Yes, think I understand now. Although quite a few dropped out along the way, it looks like one of the APT recruits withdrew their consent at some point, which presumably meant all the data relating to that person had to be purged from the record. Hence APT had data recorded for 159 participants rather than the original 160 recruited. By the look of it the other drop outs didn't actually withdraw consent for their data to be used.
     
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  5. Artstu

    Artstu Senior Member

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    You're right it is a hell of a pace, only really possible for me in the freezing winter after a few months build up. I certainly can't do it in this heat.
    I've been down at walking at 2 mph or less and only managing a few minutes of walking. I know I'm lucky to have been able to make some good progress.

    On topic I went backwards when on a ridiculous GET programme, my therapist was clueless beyond belief.
     
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  6. Countrygirl

    Countrygirl Senior Member

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    [​IMG]


    The above is a slide by White. On what does he base his claim? :confused:
     
    Last edited: Jul 8, 2017
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  7. Dolphin

    Dolphin Senior Member

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    For what it is worth, I think that slide is from this talk:
     
  8. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    There were 641 patients who participated. When one patient later on became aware that the investigators did not disclose their conflicts of interest, she withdrew her consent. Once that happened, all of the trial data had to be recalculated.
     
    Last edited: Jul 7, 2017
  9. trishrhymes

    trishrhymes Senior Member

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    Does anybody know of a published study that shows this.

    If his treatment has such great power over patients beliefs, the that is strong evidence that anything they say in questionnaires will reflect those beliefs, so they are likely also to say they are more able to do physical stuff and are less fatigued, even if that's not objectively the case.

    In other words the patients are either brainwashed, or, it seems more likely to me, simply saying what the therapist wants them to say.

    A very strong argument that such subjective outcome measures are not suitable for clinical trials of this sort of therapy, since all they are measuring is the power of the therapist to get patients to say what the therapist wants them to say.

    And of course that's why White and co. have abandoned any objective measures. The whole thing is an exercise in manipulating patients to fill in questionnares 'correctly' to support their crackpot theories.
     
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  10. Snow Leopard

    Snow Leopard Hibernating

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    The 10m corridor thing also shows you that they didn't really take the 6mwd thing seriously...

    In other news, my headache hurts much more today.
     
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  11. Barry53

    Barry53 Senior Member

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    If people's perception of their physical function improvement is wildly and mistakenly over-optimistic compared to their actual improvement, then their perceptions about deconditioning will also be heavily skewed. It's all about perceptions rather than reality. The clue is in the slide: "... believed physical deconditioning was ..."
     
    Last edited: Jul 8, 2017
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  12. Dolphin

    Dolphin Senior Member

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    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC26565/
     
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  13. Barry53

    Barry53 Senior Member

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    Following on from my earlier post #401, I've been looking a bit more at the disparity between perceived and actual physical function, exemplified by PACE and perpetuated by GETSET and others.

    Bearing in mind PACE set the bar for improvement at a 50% increase in perceived physical function (as per the SF-36 PF sub-scale), if you look at the highlighted figures below extracted from the FOI-released PACE trial data, you can see that with the bar at 50% improvement, the number of participants who perceived their physical function to have improved >= 50% at 52 weeks compared to baseline, was much higher than the 6 minute walking test indicated.

    upload_2017-7-9_11-38-31.png

    Interestingly if you increase the bar to 100% improvement, the disparity between perceived and actual PF for numbers of CBT and GET participants becomes increasingly disproportionate, albeit the numbers for actual PF are getting statistically small by then (and are less than for APT or SMC):-

    upload_2017-7-9_11-48-54.png

    With the rider that, as @Snow Leopard indicated, the 6mwt is itself unlikely to be wholly objective either.
     
    Last edited: Jul 9, 2017
  14. Maya24

    Maya24

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    Thanks so much for posting this video on the forum. Reading medical research discussions are so exhausting and drains my energy. I finally understand the issues.
     
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  15. slysaint

    slysaint Senior Member

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    Wasn't sure where to post this.
    Just been reading thro the BACME guide for severe CFS/ME:

    "
    6.2 PROM (Patient reported outcome measure)

    Since 2006, PROMs used in the majority of adult CFS/ME services in England have been the
    Minimum Dataset agreed by the services across England, The baseline measures are
    Hospital Anxiety and Depression scale (HADS), Chalder fatigue scale, Pain Visual Analogue
    scale, Physical Function SF36, Self Efficacy Scale, EQ-5D, Epworth Sleepiness Scale. All
    baseline measure are repeated at follow-up, with the addition of the Clinical Global
    Impression of Change. These are used at before treatment (baseline) and at follow-up.
    With cessation of National Outcomes Database service, some services are reviewing the
    PROMs they use.

    Some services reported using additional questionnaires including
    - Work and Social Adjustment Scale
    - Pittsburgh Sleep Index
    Services reported a range of strategies to make it easier for severely affected patients to
    complete questionnaires including allowing patients to complete the questionnaires over
    several weeks, rather than on the same day and assistance from therapist or carer (for
    example, to read out questions and to write down answers).

    6.3 CROM (Clinician reported outcome measure)
    There is a CROM developed in rehabilitation settings (TOMS : Therapy outcome measure
    Therapy Outcome Measures for Rehabilitation Professionals 3rd ed Pam Enderby and
    Alexandra John. J&R Press) allows clinicians to describe relative abilities and difficulties
    of a patient/client in the four domains of impairment, activity, participation and
    wellbeing in order to monitor changes over time. This allows for an assessment of change
    in function and role, without significant burden on answering questions on the part of the
    patient. It is a measure that can also be used in collaboration with the patient.
    There is a new version of TOM specific to patients with CFS/ME in preparation at present."

    Anyone know anything about the 'new version',( or even the old version for that matter )?
     
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  16. PhoenixDown

    PhoenixDown Senior Member

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    I like how Peter White pretty much admits they changed the definition of ME 30 years ago.
     
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  17. Jo Best

    Jo Best Senior Member

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    Following the link in the tweet below:
     
  18. slysaint

    slysaint Senior Member

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    ".PW.....CMO at Swiss Re Life and Health in London"...........
    Absolutely no COI theno_O
     
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  19. Jo Best

    Jo Best Senior Member

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    I thought it was worthy of its own thread as it's an upcoming event: http://forums.phoenixrising.me/inde...wiss-re-insurance-medicine-summit-2017.53306/

    It's also relevant to the JHP thread as David Marks' tweet stems from Twitter exchanges about the PACE trial with the President Swiss National Science Foundation and Professor of Epidemiology & Public Health.
     
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  20. Barry53

    Barry53 Senior Member

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    How come this link now takes us to the 22 July issue of the Lancet, even though the paper was originally published in the Lancet 22 June, and this thread was originally started 23 June? And the link still nontheless shows it as being published 22 June. I'm confused - how does this work? Is it differences between online and printed editions?
     

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