Petition Calling for Action for ME Resignations.

Discussion in 'Fibromyalgia Main Forum' started by tansy, Feb 26, 2011.

  1. tansy

    tansy New Member

    Action for ME's endorsement of the PACE trial meant PWME were seen as approving it. Following its publication and press coverage PACE has set us back decades.

    A petition has been set up calling for resignations, you do not have to live in the UK to sign it. You can opt to have your name hidden and there's a box for adding a comment should you so wish.
    [This Message was Edited on 02/26/2011]
  2. slowdreamer

    slowdreamer New Member

    It was interesting to go to the site and read the comments..Found it easy to do and quick.
  3. Bunchy

    Bunchy Member

    I've just done it - I think I made some valid points although there was a bit of a vent involved too ;)

    Love Bunchy x
  4. quanked

    quanked Member

    but I wonder if 400 signatures will be enough.

    I am so grateful for my computer and the technology. There is no way I could do all I do (I sign a lot of petitions) without the internet. It is not always enough, most of the time it is not, but it sure is better than nothing.

    I hope the resignations will be forthcoming.
  5. tansy

    tansy New Member

    Thanks Slowdreamer, yes it's easy even for us.

    Thanks Bunchy, others have used this opportunity to vent too.

    Thanks Quanked. Hopefully there will be many more signatures. AfME were well aware of PWME's objections from the very start of their involvement in PACE and chose spin instead of listening to us.

    Modern technology and the Internet have given us a voice. :)
  6. mbofov

    mbofov Active Member

    It's hard enough getting treated for CFS in the U.S., cannot imagine what it's like in the UK -
    good luck!

  7. tansy

    tansy New Member

    Hi Mary. Many PWME cannot get even the most basic symptom relief, it's not uncommon for other treatable health issues to be ignored too.

    We now have 400 signatures on this petition and there are now two challenging AYME who are even worse than AfME.

    Take care, Tansy
    [This Message was Edited on 03/03/2011]
  8. tansy

    tansy New Member

    If you have not signed this petition please do so. The most recent comment #448 shows how the publication of the PACE trial is having a negative impact outside the UK.
    [This Message was Edited on 03/06/2011]
  9. tansy

    tansy New Member

    This is his contribution to the Science Media's press release on PACE.

    "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."