1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
New Exercise Study Brings Both Illumination and Questions
Simon McGrath looks at new objective evidence of abnormal response to exercise in ME/CFS patients, and the questions that researchers are still trying to answer ...
Discuss the article on the Forums.

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

    Messages:
    1,224
    Likes:
    176
    London
  2. Esther12

    Esther12 Senior Member

    Messages:
    5,134
    Likes:
    5,005
    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.
    Wildcat likes this.
  3. Min

    Min Senior Member

    Messages:
    1,087
    Likes:
    901
    UK
    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.
    Wildcat likes this.
  4. Esther12

    Esther12 Senior Member

    Messages:
    5,134
    Likes:
    5,005
    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.

See more popular forum discussions.

Share This Page