Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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A pharmacist's guide on ME

Discussion in 'General ME/CFS News' started by Countrygirl, Jun 13, 2017.

  1. Countrygirl

    Countrygirl Senior Member

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    While AFME is promoting CBT and GET to GPs and using patient funds to finance it, I understand, they have, at least, produced a good document for pharmacists on ME. There are flaws, but on the whole it seems a useful booklet. Somehow it doesn't exactly jive with their all-things PACE stance and their flirting with the devil ;):whistle:

    https://www.actionforme.org.uk/uploads/pdfs/mecfs-guide-for-pharmacy-teams.pdf

     
    Last edited: Jun 13, 2017
    Barry53, Hutan, AndyPR and 6 others like this.
  2. Snowdrop

    Snowdrop Rebel without a biscuit

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    Well it doesn't conflict with PACE and it is helpful so it can act as a smokescreen drawing the unwary in. It's gateway info. They need it to get access to people so they can continue to have influence for promoting PACE CBT/GET.

    Unwary: Oh look, some useful info from AfME that might help my ME.

    AfME: Now let us introduce you to PACE.

    AfME need to be isolated as not fit for purpose as advocates for people with ME. AfME's continued affiliation with Esther Crawley is poison to people with ME.
     
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  3. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    I have to concur.

    I have a meeting about a pharmacy and ME this week and if this document wasn't from AfME, I would refer them to it.

    But it is, so I won't.
     
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  4. Countrygirl

    Countrygirl Senior Member

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    Very sadly, I agree. They can churn out some half-decent literature, but it is a bit of a honey trap. How can you trust an organisation that spends patients' money on spreading the gospels of Esther and White to GPs thereby perpetuating the disgraceful harm that is inflicted upon people with this appalling illness? It is almost as though EC has some stranglehold on this organisation.
     
  5. lnester7

    lnester7 Seven

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    Here is my question: How can they be so organized to have presentations to Doctors, Pharmacist guide.... We just need to write an strategy and counterpart each move. Combat misinformation with good info.
    Also, can there be something done from the real CFS organization like a cease and desist letter for designating false information???
     

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