arrow13 Comments
  1. Linda Danielis
    Mar 01 - 4:18 pm

    Very effective use of animations and You tube to simplify a medical paper and highlight the importance of method and measurement in research design.

    • Cort Johnson
      Mar 01 - 5:06 pm

      Isn’t that something…these guys; I think it was Graham’s son – who has ME/CFS – and perhaps others who did those…If you go to the paper you’ll see further html advances – it’s really something.

  2. Merry Speece
    Mar 01 - 5:03 pm

    Terrific discussion and videos. Thanks, Graham (love your voice and nice dog!), Bob, and others who worked on this. Thanks, Cort, for making this available.

    • Graham
      Mar 01 - 6:16 pm

      Thanks, Merry and others. Your support is greatly appreciated.

      We wouldn’t have finished the project if it hadn’t been for Janelle’s tireless work in producing content, improving legibility, and raising the scientific standard, so she deserves an enormous public cheer. And also for my son who had the patience of a saint improving the layouts, inserting graphics, and in creating or improving my efforts at animations. The amount of work that the others in Phoenix Rising put in the thread, whose ideas we used, who advised us on content, and who are working hard still to refute more recent claims, is amazing; many of them preferred to remain in the background, but they know how grateful I am to them.

      We all have ME: that’s why it took us a year to complete it.

      It was an honour to be part of such a great team.

      • Janelle Wiley
        Mar 01 - 8:38 pm

        Also Alex Young deserves a particular mention as he wrote some of the content as well. Of course there were a lot of people involved in the project, and it was and is an honor working collaboratively with such an amazing team.

        Janelle

  3. Lars
    Mar 01 - 5:15 pm

    Thanks Cort,

    It is good to see patients “undressing” the lies of PACE and you putting it together.

    There is little doubt that the Wessely school psychiatrists at King´s College is producing “made to order” research aimed at psychosomatizing large groups of patients with serious and chronic organic diseases, labelling them MUPS. Please check out this on Wikipedia:

    http://en.wikipedia.org/wiki/Medically_unexplained_physical_symptoms

  4. Pennie
    Mar 02 - 5:33 am

    You talk about Specialist Medical Clinics at one point – is that right? Can you please doublecheck? The term could be Specialist Medical Care (SMC).

  5. Esther12
    Mar 02 - 7:52 pm

    Thanks for this blog.

    Lots of complicated issues mentioned here, but there’s one bit I noticed which could need clarifying now that the new PACE recovery paper is out (it could also be worth mentioning that this interview took place prior to that paper’s release, assuming that it did).

    re – “Can you briefly explain how it is that someone could improve enough for the authors of the PACE trial to say they’ve recovered but they’re still ill enough to meet the criteria for CFS. (Did I get this right?).

    Yes, you got it right. One can simultaneously qualify as severely fatigued and able to enter the study, and as “back to normal”.

    It is the criteria for those that PACE’s researchers classed as “back to normal” which overlaps with their criteria for CFS. Lots of other people (researchers and journalists) took “back to normal” to mean ‘recovered’, but PACE’s researchers did not use the term. They have now released a new paper with a hugely loosened criteria for recovery compared to the one that they laid out in their protocol, but also one which specifically requires thaty patients no-longer fulfil their criteria for recovery.

    I’d suggest an edit to:

    “Can you briefly explain how it is that someone could improve enough for the authors of the PACE trial to say they’[re back to normal], but they’re still ill enough to meet the criteria for CFS. (Did I get this right?).”

    Maybe explaining that others used this to claim that patients were recovered?

    The new PACE recovery paper uses a criteria which makes it much more difficult to talk about these things concisely.

    Also, this point is possibly confusing:

    “patients assigned to Specialist Medical Care actually showed a greater degree of improvement than patients given CBT/GET”

    Patients assigned to SMC showed greater improvement than the additional improvement which occurred when CBT/GET was added to SMC. Patients who received SMC+CBT and SMC+GET reported greater improvements than those who received SMC alone. (All patients received SMC, some SMC+GET, some SMC+CBT, some SMC+APT). It could be that some sacrifices need to be made to prevent things from becoming to complicated, but as this was one of the main bullet points, I thought that I’d mention that it could be misinterpreted. Considering the fact that SMC was such a brief intervention, and the reported improvements from the addition of CBT and GET were such minor changes in questionnaire scores, it does look like the positive affects could just be a rather worthless placebo affect, particularly as the addition of CBT/GET did not lead to improvements in things like employment rates, or patients on disability benefits.

    I’ve bored myself with all that! If I’d written it, this blog post would be unreadable.

    • Bob
      Mar 03 - 6:37 am

      Hi Esther,

      The ‘normal range’ is used as one of the individual ‘recovery’ criteria in the new ‘recovery’ paper, so I don’t think it’s inaccurate to say that the authors consider the ‘normal range’ to equate to ‘recovery’. Actually, I think the new ‘recovery’ paper confirms what’s written in Cort’s blog.

      “We chose domains for defining recovery on the basis of the previous literature and the measures available from the trial. The thresholds defining our criteria for recovery on each domain were based either on population normal ranges, case definitions or trial entry criteria.”

      See Table 1. in the ‘recovery’ paper, and the ‘normal range’ is described as a ‘domain’ and ‘criteria’ for recovery.

      In any case, an SF-36 PF score of 60 is used as a minimum threshold for the ‘trial recovery’, as far as I understand it.

      That’s my interpretation anyway.

      Bob

      • Esther12
        Mar 03 - 2:13 pm

        Hi Bob. Yeah, but they’ve now required that patients are no longer able to fulfil the criteria for CFS for their criteria for recovery. Explaining how that affects things is complicated, and could lead to confusion if patients were to claim elsewhere that PACE’s criteria for recovery allowed patients to get iller during the trial, yet still be classed as recovered by the end of it. They class a score of 60 as both normal and abnormal in the same paper, but there are other parts of the criteria for recovery to be accounted for to.

  6. ahimsa
    Mar 04 - 5:49 pm

    I love all these videos by Graham! I’ve seen them before but it’s always nice to see them again. They are perfect at breaking down complex issues into something most anyone can understand.

    Thanks for posting them here.

    Marjorie

    • Cort Johnson
      Mar 04 - 5:55 pm

      I do too…There are video’s and there are video’s. They are well done in all phases of the game; visually and educationally…

  7. nasim marie jafry
    Mar 09 - 1:58 pm

    Thanks so much to everyone involved in the analysis of the skulduggery that is the PACE trial. The graphics are great for simplifying the complexity. And, yes, their definition of recovery should win the Booker fiction prize.

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