1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 8th April 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

David Tuller: Trial By Error: Carol Monaghan Scores Another Parliamentary Debate

Discussion in 'General ME/CFS news' started by Barry, Jan 21, 2019.

  1. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,258
    Location:
    UK West Midlands
    Agree @Stewart it is going to be a lot of chipping away that’s going to get us to a point where things change significantly.

    on the face of it the change that got the Hillsborough enquiry seems like it was the reaction to Andy Burnham speaking at Anfield but there was pressure and many steps over years that led up to that point.

    This debate is a step forward for ME - just that. More steps are needed beyond Thursday.
     
    EzzieD, ladycatlover, Barry and 9 others like this.
  2. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    4,393
    I expect that the PACE lot will do their best to present this as being dangerous political interference in science, like climate change deniers. In some ways, I wonder if it could have been better if the motion had been a bit more cautious, or focussed on a specific like the PACE recovery claims.

    It will be hugely humiliating for the UK Establishment to acknowledge that they were wrong about all this, and a lot of people will want to fight back. The same is true with the UK science media. To our advantage, I think that we're now at the point where a lot of important people realise that they're on thin-ice with PACE/CBT/GET, but it's still up in the air how the good/harm from this debate will balance out in the medium term. Hopefully it will encourage more people to look at the evidence and realise that we were right to be raising concern... but people hate admitting that they've got things wrong.
     
    rvallee, EzzieD, ladycatlover and 6 others like this.
  3. Stewart

    Stewart Senior Member (Voting Rights)

    Messages:
    238
    I suspect the MPs who wrote the motion are well aware of this possibility (probability? certainty?) and that it informed their decision not to be more specific or demanding in terms of what they were asking for.
    • Increased funding for biomedical research is relatively uncontentious - the Chief Medical Officer's report called for the Government to provide this back in 2002 but it demonstrably hasn't materialised to date.
    • The call for the 'suspension' of CBT and GET suggests only a temporary stoppage - and as NICE has decided the evidence base for these therapies has been called into question, there's a strong argument to be made that the NHS should stop recommending them until the guideline review has been completed.
    • It'd be awkward for the SMC to argue that GP training on diagnosis and management *shouldn't* reflect the international consensus...
    • ...and they'd have to be mad to try and defend families being subjected unnecessarily to child protection proceedings.
    These are all reasonable and modest requests. It'll be hard for the SMC to successfully portray this as undesirable political interference in the scientific process - although I'm sure they'll give it a try.
     
    Last edited: Jan 22, 2019
    Esther12, Sly Saint, EzzieD and 11 others like this.
  4. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,425
    Location:
    Canada
    This argument is used often and it's absurd on its face. This is not about basic science. The researchers themselves admit that they make no claims about cause, pathology or even imply that it's psychosomatic (which they do, they just keep that opinion out of those papers and the resulting guidelines). They are specifically doing trials aimed at treatment options with the intent of becoming widely accepted clinical guidelines in practice, delivered to millions.

    Sharpe, Wessely, White, Chalder, Fink, Lloyd and the rest have spent considerable effort pushing their ideology into practice, to be used in a clinical setting, in some instances with force of law. This kind of work normally cannot be detached from patient experience and input. Not a single element of this research has advanced understanding of the disease and their promoters themselves recognize that, arguing that they are merely offering a treatment option where none otherwise exists.

    It says a lot that this argument is taken seriously, thanks in part to the SMC. In the climate change argument, this would not be about what is the nature of climate change or if it exists but rather about which specific solutions would work to address it. The psychosocial model basically amounts to nuking the sun, it's that detached from reality. It's incredibly dishonest and shows how little confidence they have in their beliefs, that they need to make up strawman arguments to defend against legitimate criticism.
     
    Last edited: Jan 23, 2019
    EzzieD, andypants, Sean and 1 other person like this.
  5. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,425
    Location:
    Canada
    Even more so when they have a legal obligation to rely on objective evidence and real-world patient input and data, which they have purposefully chosen to disregard. The legitimate objections from patient advocates are on public record. They form a damn long and voluminous record of failure. For many it's embarrassment. For some it is serious, career-ending, legal liability.
     
    EzzieD, andypants, Sean and 1 other person like this.

Share This Page