Jen Brea launches mass-advocacy platform — #MEAction goes live!
Jen Brea is a phenomenon. After working as a freelance writer in China and Africa, she enrolled for a PhD at Harvard in political science but, four years ago, got sick. She had a fever that lasted ten days.
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Action for ME survey on NHS provision for ME

Discussion in 'General ME/CFS News' started by Jenny, May 14, 2012.

  1. Jenny

    Jenny Senior Member

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  2. Esther12

    Esther12 Senior Member

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    I read that more thoroughly than I needed to.

    It could have been written by Esther Crawley, and reads like an appeal for more money to be given to those who have treated CFS so badly.

    At the moment, we don't need to spend more money on the 'care' that they are offering, we need to ensure that less money is given to those who are willing to mislead and manipulate patients.

    It completely failed to go in to specifics about what A for ME thought this 'care' that needed funding was, and what sort of value for money it provided. I don't think it's ignorance which leads PCTs to distrust Crawley's claim that PACE showed a 30-40% recovery rate for CFS - anyone interested in looking at the evidence can see that she was lying.

    PS: Thanks for posting it though Jenny.
     
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  3. Min

    Min Guest

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    I keep asking AfME on their facebook page to tell me how their involvement in the PACE trial helped end the "ignorance, injustice and neglect" we face. They keep deleting my question.
     
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  4. Esther12

    Esther12 Senior Member

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    I'm oblivious to facebook stuff, but it does seem like more on-line discussion is going there.

    I can only keep up with one site!

    Do they say exactly what 'care' they think the NHS should be paying for, or who should be given this money? Without those details, this report seems worthless, and something that could be easily abused by anyone looking to make money out of CFS.
     

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