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AfME's New Principal Medical Adviser: Dr Miller (who promotes CBT and GET)

Discussion in 'Action Alerts and Advocacy' started by Orla, May 7, 2010.

  1. Bob

    Bob

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    Ridiculous.

    Is this the 'behaviour' where you are in so much pain that you can't walk, or the 'behaviour' where you are so weak and exhausted that you can't even take a shower?
    I wonder why they don't give CBT to people who have the flu? People with flu and their stupid illness behaviour! They should get back to work!


    Ridiculous.


    There's a surprise!


    This gives a very disturbing insight into the minds of the CBT promoters.
  2. Bob

    Bob

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    I know it's not directly related, but here's a very interetsing quote from Dr Vance Spence, the Chairman of ME Research UK.


    What a difference in attitude to AfME's new advisor!
  3. Dolphin

    Dolphin Senior Member

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    One can listen to an interview with Dr. Miller at:
    http://parafort.com/ri/?p=394

    Nothing too exciting except he doesn't seem to be that interested in infectious angles (Lyme is specifically mentioned but there is some phrase about "speculative infections" or something like that). Given his main value might be if he was into infections, it isn't great (but there isn't a huge amount of info to go on).
  4. Bob

    Bob

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    Response from AfME to the FINE Trial:
    http://www.afme.org.uk/news.asp?newsid=822

    [​IMG]
  5. Min

    Min Senior Member

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    AfME have supported the FINE and PACE trials from the beginning. Only when they call for all research to be done using te Canadian Criteria to select participants I shall believe they are serious in their calls for biomedical research.

    The appointment of Dr Alastair Miller would appear to be another of their many underhand attempts to have M.E. viewed and treated solely as a psychological disorder, despite their lip service to the contrary.
  6. Bob

    Bob

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    Yes, I totally agree with you Min...
    That's what the flying pigs, after the AfME quote that I posted, were trying to say... but you said it much better!

  7. Orla

    Orla Senior Member

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    yeah, we are now merged (the threads I mean :Retro smile: ). Thanks Sarah,

    Orla
  8. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    That's alright, then, Orla, for a moment I thought you were reporting some kind of Vulcan mind meld -
    My mind to your mind... my thoughts to your thoughts...

    ...you wouldn't want to be inside my head.

    Suzy
  9. Dolphin

    Dolphin Senior Member

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    Just swotting up on my "Alastair Miller"

    That link didn't work for some reason but this one does (just watching it now):
    http://rsm.mediaondemand.net/playersp1.aspx?EventID=1337

    It can look like it is 54 minutes long.
    However it's only 25:24 long.
  10. Dolphin

    Dolphin Senior Member

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    Well said.

    Also, many people like pacing and the energy envelope management techniques - they're behavioural in a somewhat similar way to GET being behavioural.
  11. Dolphin

    Dolphin Senior Member

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    Looking at the video, he has no interest in the infectious angle.

    And as somebody knowledgeable, he could be more difficult to argue with.
  12. Orla

    Orla Senior Member

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    Miller on PACE Trial

    Latest from Miller:

    Dr Alastair Miller, Consultant Physician at Royal Liverpool University Hospital, Clinical lead for CFS services in Liverpool, Independent assessor of trial safety data for PACE trial and Principal Medical Advisor, Action for ME, said:

    "Although NICE have previously recommended graded exercise and CBT as treatments for ME/CFS, this was on the basis of somewhat limited evidence in the form of fairly small clinical trials. This trial represents the highest grade of clinical evidence – a large randomized clinical trial, carefully designed, rigorously conducted and scrupulously analysed and reported. It provides convincing evidence that GET and CBT are safe and effective and should be widely available for our patients with CFS/ME.

    "It is clearly vital to continue our research into biological mechanisms for ME/CFS but recent 'false dawns' for example, over the role of retroviruses (XMRV) have shown how difficult this can be. In the current absence of a biomedical model for the causation and the absence of any pharmacological intervention, we have a pragmatic approach to therapy that works and we should use it.

    http://www.sciencemediacentre.org/pages/press_releases/11-02-17_cfsme_trial.htm
  13. Mithriel

    Mithriel Senior Member

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    "It'd gie ye the boak" as my granny used to say. (cause nausea)

    Mithriel
  14. Enid

    Enid Senior Member

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    Back to the Dark Ages - again.! One had hoped for something more enlightened from Afme in the light of past and present international expert findings. I accept no compromise. As to continuing "our" research - where is it - CBT/GET? - its all coming from the US and dedicated European researchers (excl UK). The so called experts on the sciencemediacentre page are simply not EXPERTS.
  15. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    haha my granny too! then she'd kick someone's arse for being such wicked, stupid ratbags ;)
  16. Enid

    Enid Senior Member

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    Silverblade - (my GGF all the way from Aberdeen) - the boot sounds great.
  17. biophile

    biophile Places I'd rather be.

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    AfME are in an odd position!

    AfME supported the funding for the PACE trial (?), which supposedly was "designed in collaboration" with AfME, helped to develop the APT protocol and apparently got duped by White et al (what did they expect?). Publicly disputed the published results and are developing a critical "strategy" response against PACE. Meanwhile their principal medical advisor, Dr Alastair Miller, gives glowing praise for the PACE trial: This trial represents the highest grade of clinical evidence a large randomized clinical trial, carefully designed, rigorously conducted and scrupulously analyzed and reported. It provides convincing evidence that GET and CBT are safe and effective and should be widely available for our patients with CFS/ME."
  18. Enid

    Enid Senior Member

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    Too angry to comment at this attempt to rekindle CBT/GET as a major treatment. And Dr Miller of Afme promotes. Don't see it in the Real Experts protocols - they find and treat pathologies.
  19. Bob

    Bob

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    Yep, I've found that interesting as well... There's been such an enormous backlash against the PACE Trial... And even AfME seem to be quite pissed off with the results, and feel like they've been duped... Their statements have been quite helpful... And as our community has been speaking with one voice against the PACE Trial... I'm hopeful that this might be a turning point for AfME and for our wider community and that the backlash against the psychologists, and psychological interventions, increases exponentially from this point forwards! (i know, i'm ever the optimist!)
  20. Enid

    Enid Senior Member

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    Perhaps not being duped should be the guiding light.. Until such time as psychiatrists (or whatever) promoters of CBT/GET etc remove themselves from the frame we might move forward.

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