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LETTER, PACE trial, M.E. - Conflicting advice and what we should do now (22 Feb 2011)

Discussion in 'Action Alerts and Advocacy' started by drjohn, Feb 22, 2011.

  1. drjohn

    drjohn Senior Member

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    LETTER, Re: The PACE trial about M.E. (Myalgic Encephalomyelitis) - Conflicting advice and what we should do now (22 February 2011)

    To read a letter from Dr John Greensmith
    click http://www.mefreeforall.org/index.php?id=2694#c10315

    Please take every opportunity to make a comment online under every article about the PACE study and/or send an e-mail to the publication, since they are sometimes different sets of readers. The more who do, the greater is the chance of a really good discussion and follow up.

    Cheers
    John
    drjohngreensmith@mefreeforall.org
    Dr John H Greensmith
    ME Free For All. org
     
  2. Mark

    Mark Acting CEO

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    Thanks for another excellent letter John. I have just one problem though, and it's a major one: a tactical problem perhaps but you seem to call for the next slice of 1.5m to be spent on resolving the controversy, which effectively means continuing to spend the money on CBT/GET research, no?

    There is abundant evidence from the PACE trial itself that CBT/GET's benefits are mediocre at best, that this only applies to a smal subset of patients, and that there are considerable dangers attached even in the subset selected for the trial.

    The headlines are outrageous, the abstract itself is consciously misleading (humpty dumpty was in charge of linguistics again), and the methodology is a maze of obfuscation...but even so, our excellent thread analysing the results themselves, and Cort's article, and the analysis we will all do over coming weeks and months, shows the reality clearly. The obfuscation isn't enough to fool all of the people...

    We need that 1.5m to at last go on biomedical research, for the first time ever: that would be a massive statement of intent. We need to start researching the disease. We could run more PACE trials from here to doomsday and they'd always be subverted and distorted just as PACE was. We can't afford to give ground and say OK let's do a CBT study again, properly, and disprove it once and for all: instead we need proper research, biomedical research, research that characterises the patient population and investigates their biological abnormalities.

    Maybe there's a middle ground, because it's characterisation of the patient population that's so important: we need data about who has been diagnosed with ME/CFS, who hasn't but has the same or similar conditions, how many of us there really are, what categories we come under, and then measurements of biomedical data so we can start to see what we're actually looking at. That approach seems to me more logical than diving in and pursuing specific theories about the disease, because those theories if wrong would deliver nothing, and with a heterogenous population the picture will anyway turn out to be confused. We have to characterise the population before we can ever get clarity over anything: no matter what research is done if it says "this applies to ME/CFS" when that term clearly does not cover a homogeneous group, then the results will be confusing because we'll have no way of correlating the findings with reality.

    Maybe I misunderstand you, but if you are calling for the whole of the 1.5m to be spent on resolving the questions over CBT/GET then...how? If by another CBT/GET trial, that doesn't sound like change to me. My call on that pot is: collect some data, define some well-defined cohorts, survey the whole population, and let's get started studying ME and CFS. The trial has proved in its own terms that CBT/GET don't cure, they just have a small chance of delivering an improvement in quality of life, and even that improvement might be illusory.

    Nobody, not even the psych lobby, is claiming that CBT/GET cures the disease and the explanatory model it's based on has to be flawed if that's the case. So it's time to start researching the illness, time to start finding out who we really are, what we all have, how many of us there really are, where we are, how long we've all been sick, what treatments work for which people...data, data, data...

    We need to be more careful what we ask for, IMO, and what we don't want is any more focus on CBT/GET. That's been done to death. People will continue to see what they want to see, on both sides, but a virus is a virus and if you find something like that, hard facts are harder to ignore: physical biomedical research, and nothing less will be acceptable for that 1.5m pot. How that pot gets allocated will be crucial: if it goes to the psychs yet again than I shudder to think what the consequences of that might be.

    One more suggestion of the type of radical thing that might work. I don't know whether you noticed the scandinavian study recently that found evidence of a virus implicated in Alzheimer's? That was an amazing and highly promising finding and an amazing technique. In very rough terms (this is a really crude description OK), they took a board with thousands of antigen-like shapes, ran patients blood over it, and looked to see what the blood stuck to. In this way they were able to find an antibody shape in patients' blood without needing to have found the virus in the first place. The technique has the potential of searching for an arbitrary virus in any patient population: they ended up with an antibody test for Alzheimer's that was then found in 98% of their (small) study population, and so now the hunt is on for the virus that fits that antibody shape...and for confirmation of the antibody results of course.

    One could do that for ME/CFS to search for an arbitrary virus. In a well-characterised patient population that includes people with ME and people who are bedbound, of course...
     
  3. Glynis Steele

    Glynis Steele Senior Member

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    Hi Mark, not sure if this is helpful, but it's a link to the ME Association, about 1.5 million funding from MRC, some of which is to be used for research into "immune disregulation (eg through viral infection)"

    http://www.meassociation.org.uk/?p=4085

    ~Glynis
     
  4. Enid

    Enid Senior Member

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    Quite agree Mark, No more CBT/GET studies or we will go on 'til domesday. Diagnosis data could be sketchy as many medics still will not do so, or only eventually (and reluctantly) by default. Post PACE everything points to research the "cause" - large PACE sums have brought nothing to the understanding of the disease/process. How short sighted - if they knew that the medical profession would not have so many ill people anyway.
     
  5. Mark

    Mark Acting CEO

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    Yes Glynis, that's the 1.5m we're both referring to: the next MRC pot, allocation of it to be decided/announced in June I think. Will be interesting to see where it goes...
     
  6. drjohn

    drjohn Senior Member

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    Hi Mark, I'm not advocating more CBT/GET for people with M.E. Nor do I much care where the money comes from. I'm looking for better designed research. So, for example, if you applied more rigorous criteria for people with M.E. and - yes you would have to retest using the same treatments they had used here - I believe that we would see a very different outcome -- amd that should say goodbye to CBT and GET for people with M.E. (whatever it does for others in that CFS bundle, which is doing no good to anyone at all.
     
  7. Enid

    Enid Senior Member

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    Thanks for making that very important point drjohn - doing away with CBT and GET for people with ME. It's all that is offered in these parts. And that or lose benefits. Many thanks for all you are doing too. Must add CBT positively dangerous. And personally sink them.
     
  8. Mark

    Mark Acting CEO

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    So it still seems to me that your letter is arguing for another CBT/GET/APT trial - better designed, with more rigorous criteria - and suggests getting the money from the MRC pot: "Coincidentally, The Medical Research Council (MRC) has recently announced 1.5 million of new funding. It would not be overreacting to claim all of this and more if necessary, to settle this crucial issue."

    I can't see any other way to read this except to conclude that you are saying you would like the 1.5m to go into a 'PACE+' trial, to do the same thing again, but better, with more rigorous criteria, presumably including ME patients this time.

    Suggest you contact White, Chalder et al, because I expect they will be proposing exactly that. We all want better designed research, but your proposal to retest the CBT/GET techniques again would be giving the money to the psychs who did this study, to do it again on people with ME this time, and this would just be playing straight into their hands.

    In order to retest using the same treatments, who else are you suggesting should deliver the CBT/GET?
     
  9. drjohn

    drjohn Senior Member

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    Indeed, Enid. The PACE trial should have forced this issue. There are still, however, some fence sitters and some giving out cotradictory messages.
     

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