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Science Media Centre Expert Reaction to PACE 2.5 year follow up

Discussion in 'General ME/CFS News' started by Scarecrow, Oct 29, 2015.

  1. Scarecrow

    Scarecrow Revolting Peasant

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    http://www.sciencemediacentre.org/e...nts-for-cfsme-and-accompanying-comment-piece/
     
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  2. Wildcat

    Wildcat

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    Hi Scarecrow, I have reposted this material on the thread '
    'UK: MEA calls for GET & 'false illness beliefs' CBT to be ditched as primary treatments for ME' in General news
     
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  3. Valentijn

    Valentijn Senior Member

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    Professor Rona Moss-Morris: idiot or fraud? You decide! :thumbsup:
     
  4. Sidereal

    Sidereal Senior Member

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    o_O
     
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  5. sarah darwins

    sarah darwins I told you I was ill

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    Well, that's because, as another psychiatrist helpfully explained last week, some people have unresolved childhood trauma issues which probably need to be sorted out before the CBT can work.

    http://forums.phoenixrising.me/inde...trauma-and-cfs-sean-lynch-psychiatrist.40740/

    Obvious, really.
     
  6. worldbackwards

    worldbackwards A unique snowflake

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    Satire.
     
  7. sarah darwins

    sarah darwins I told you I was ill

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    On a serious note, this is exactly the problem, isn't it, with UK media coverage.

    "Expert reaction", as served up on a platter for journalists by the SMC, is from someone who is a close associate of the people who gave us PACE, someone predisposed to like what they see in the Sharpe study.

    SMC selection of "experts" dictates the coverage, and the SMC clearly feels that only BPS folk can be considered experts. Most depressing.
     
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  8. Chrisb

    Chrisb Senior Member

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    I do find the use of language in all these reports interesting. There seems to be an agreed line to push home the message " people with CFS benefit from CBT/GET". Somewhere later, after most have stopped reading, there is the acknowledgment that some do not benefit.

    According to the logic of their usage they can have no possible complaint if we say that people with CFS do not benefit from CBT/GET, acknowledging later that some unidentified group falling within the widest definition of CFS might benefit.

    And this is presented as science.
     
  9. Scarecrow

    Scarecrow Revolting Peasant

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    Multiple choice would have been helpful:

    A. She's an idiot
    B. She's a fraud.
    C. She's neither an idiot nor a fraud.
    D. She's such an idiot, she doesn't know that she's a fraud.

    I'm torn between B and D.
     
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  10. Valentijn

    Valentijn Senior Member

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    It's amusing how they have to twist things:
    Step 1 - Rehash original PACE and "recovery" papers
    Step 2 - Overstate the efficacy of CBT/GET in those
    Step 3 - Insert a tiny blurb about the actual followup study
    Step 4 - Trumpet that the efficacy of CBT/GET didn't decrease
    Step 5 - Try not to mention that CBT/GET were no better than pacing or controls in the followup study

    It's also interesting that the authors, the Lancet, Oxford Uni, the SMC, the NHS, and the media are all following the same recipe.
     
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  11. SOC

    SOC

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    Should we propose a YouGov poll?
     
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  12. alex3619

    alex3619 Senior Member

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    How about entrenched in the bias and cannot see out of it? Sustained benefits? What sustained benefits? No difference from comparison groups at long term mean no benefits. It now has to be seriously considered that the supposed results from PACE were entirely due to methodological bias. Those defending PACE, even now, avoid or fail to address the very specific and detailed concerns, and instead persist in reiterating general statements that do not address the questions.

    The PACE trial did not objectively show a reduction in fatigue. The use of subjective questionnaires is not reliable in this disease. Yet despite discrepancies in other studies, they dropped an objective measure (actometers) and prefer the subjective. This not good science.
     
  13. A.B.

    A.B. Senior Member

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    I've been saying that for a while. If a small group of patients has really been helped why is this not visible in the data relating to more objective outcomes?

    [​IMG]

    I don't think it's a valid interpretation to say that anyone here recovered. Either these are normal fitness levels, and patients weren't sick to begin with (in which case the study is highly misleading), or nobody had a significant increase in fitness levels as result of therapy. I do believe that fitness levels are a measure of how much patients are doing in their daily lives. If they were doing more, fitness would be going up, even if doing more just meant leaving the house a few times per week or doing more household work.
     
  14. Sean

    Sean Senior Member

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    Step 6 - Never ever use the phrase 'objective outcome measures'.

    Yes, it is.

    Of course it is nothing like the devious 'organised coordinated responses' we are accused of cooking up. Oh no, sir. When they do it, it is totally legit.
     
    Last edited: Oct 29, 2015
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  15. Large Donner

    Large Donner Senior Member

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    Ah, they need more money for more CBT and GET trials! Soon if they keep up this charade they will have claimed to have cured everyone and wont be on the grant gravy train any more.

    I guess when everyone collapses in heaps from GET they can say their minds have relapsed.

    Is this the same Moss Morris who tried to roll out all this crap in MS? Did she get chased out of MS?

    I really think they are short changing us only giving us CBT and GET, how about an apple a day? Maybe they could even run our personal lives with good old tried and tested mantras, "a stitch in time...", "dont keep all your eggs in one basket".

    I must say though on a serious note I really think this is not just about ME it is more about growing their brand "CFS", its all encompassing and has proved to be advantageous to hide stuff under and can bury many things, hold up insurance claims, benefits and/or even deny both at the same time as saving health providers time and money. It also goes along with the austerity hoax and the work is good for your health mantra.

    At this rate in 50 years there will be only one illness called CFS and big corporations will be totally indemnified against everything they do and how they do it in relation to issues causing or denying ill health.

    I just really worry about the next generation who are literally growing up surrounded by this crap and in all their entertainment, like reality tv shows etc, there is a psych or a new agey type guru claiming to have the answers to everything.

    No one is ever "right" they always have some fault in their persona that only the expert can identify until such a time as the presenters or the viewers all oooh and ahh and marvel in the wonders of identifying "mental faults".

    There is also a massive push on TV and radio to "be open about your mental health conditions". Its so noticeable here in the UK, with numerous adverts about people returning to work after some kind of generic "mental issue" and how everyone is so accepting of them. This is all put across as destigmatizing mental illness. I fear its more about growing the brand.

    I would say follow the money to see who benefits from that kind of rhetoric let alone mentioning what kind of state we could be living in in 50 years if everyone has some kind of "mental default" recorded with the state who share all our data with just about every corporate entity. Infact they are already pretty much one and the same.

    F....F.....F.....Fecking fridiot.
     
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  16. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    the word you are looking for is:
    "screaming FUCKWIT!"
    hm? :p
     
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  17. alex3619

    alex3619 Senior Member

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    We have been aware of this since 2011. If they had bothered reading or addressing our criticisms it would have been obvious to many officials, scientists and doctors. However, twice now, the PACE authors have shot an own goal. First by affirming that there is no substantive improvement in fitness, then by showing there is no improvement with respect to comparison group (adaptive pacing) or control (standard medical care) in the medium term. If they do another study later, what will it show? Its already been noted that the trends appear to show that CBT or GET patients will be worse off.

    They cannot release the data in my opinion without demolishing the trial entirely, and also because it would then be obvious how much their results are due to fishing, unfair comparison groups (where other than this trial is adaptive pacing used?) or other methods. It would also be more obvious who improved, who declined, and by how much. Averaged results can hide a lot of detail.
     
    Last edited: Oct 31, 2015
  18. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    E. All of the above except C
     
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  19. meadowlark

    meadowlark Senior Member

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    Declared interests
    Prof. Rona Moss-Morris: “Two authors of this study, Trudie Chalder and Kimberley Goldsmith, are colleagues of mine at King’s College London. I work with Trudie on other CFS work and with Kimberley on different work. I published a small study on GET in 2005. I am a National Advisor for NHS England for improving access to psychological therapies for long-term conditions and medically unexplained symptoms. Peter White (another author of the present study) is Chair of trial steering committee for an HTA NIHR-funded RCT I am working on with people with irritable bowel syndrome.”

    This is hilarious. She could not be more deeply entrenched in the work of those who produced this study, and she has written a closely related study herself.

    “Bonnie and Clyde, the people in question, are my friends. I rode in a car with them during a joy-ride, sold them bullets and counted the money out when they robbed a bank. I am also an advisor on lenient sentencing for dust-bowl desperadoes ” Objectivity assured.
     
    Last edited: Oct 29, 2015
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  20. Snow Leopard

    Snow Leopard Hibernating

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    So basically Rona Moss-Morris decided to say some nice things about her colleagues study.
     

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