Petition: AYME does not represent the ME community.

Discussion in 'Fibromyalgia Main Forum' started by tansy, Mar 2, 2011.

  1. tansy

    tansy New Member

    We the undersigned were dismayed to read that the Association of Young People with ME (AYME) stood alone in officially ‘welcoming’ the findings of the PACE trial when they were reported in an avalanche of damaging and destructive media publicity on 18th February.

    We believe that this contrived trial, founded upon selective and unrepresentative data sets, misleading interpretations of case definitions, lack of objective outcome measures and the false premise that ME/CFS patients are simply ‘deconditioned’ and suffer from ‘fear avoidance’, has set back awareness, acceptance, and a proper understanding of M.E. over 20 years.

    PACE is now likely to further negatively influence existing policy guidelines such as NICE that are already deeply unpopular; it will make it even harder for people with M.E. to access comprehensive medical assessments, APPROPRIATE services, welfare support, health insurance and ill-health pensions and it may also prove to be extremely damaging to the amount of resources available for biomedical research.

    We believe that any ME charity ‘welcoming’ PACE is NOT acting in the best interests of people with M.E. and their families. It also indicates that they are so seriously out of step with the wishes and aspirations of the rest of the ME patient community that it calls in to question their suitability and credibility to represent people with M.E. as they now appear to be indistinguishable from those responsible for promoting so much selective misinformation and propaganda in the first place.

    To clamour for services at any cost, without any reference to quality, appropriateness, or suitability, is doing people with M.E. and their families a disservice and putting the health of people with M.E. at risk.

    We call upon AYME to reconsider their position and retract their statements on PACE before harm is caused to M.E. sufferers blindly following their advice that graded exercise is now safe.

    This petition will be passed on to the AYME Board of Trustees and may be made available to other policy makers seeking to consult with patients with M.E.
  2. tansy

    tansy New Member

    Dear all

    I just thought I should inform you officially that after a long and happy association with AYME I have decided to resign as their Patron.

    Without going into too much detail I would say that over the last couple of years I have become aware that they have changed their position on several areas and that our views have accordingly diverged.

    In particular AYME seem to have become more willing to collaborate with the medical and psychiatric establishment in order to appear respectable.

    This appears to have been the cause of AYME's relative enthusiasm for the NICE Guidelines, which most of us feel involve and an overemphasis on CBT and GET.

    This compromise seems to have helped the psychiatrists to get a new lease of life.

    The result of all this is that AYME appear to have alienated themselves from most of the other ME charities (with the exception of AfME who appear to be taking a similar position).

    In this controversy I feel more in sympathy with the rest of you. I have gained the impression that AYME no longer appreciate my opinions and prefer my status as their figurehead to be a largely silent one.

    It is a combination of all these factors that has caused me to resign and I am sure you will all understand.

    With Best Wishes

    Nigel Speight
    [This Message was Edited on 03/03/2011]
  3. tansy

    tansy New Member

    Dr Speight, who is now retired from the NHS, subsequently become a Medical Advisor to the 25% M.E. Group which campaigns for, and supports, severely affected PWME.

  4. simpsons

    simpsons Member


    may be worth adding in the title that worldwide signatures welcome, the efffects are global as we have been speaking of

    the children who will be harmed by this and the effects as tymes trust jane colby put so well in her letter to the guardian.

    the cfids memorial list is devastating reading and shows how many people were so positive and that this lead to their death in many cases. heart failure being among the top three reasons along with cancer. this is very serious matter how such a charity proclaiming to support children can support this is shocking

  5. tansy

    tansy New Member

    Hi simpsons. I tried but cannot find a way of doing this within the limit allowed for the title, any suggestions would be very welcome.

    [This Message was Edited on 03/06/2011]
  6. tansy

    tansy New Member

    The Science Media Centre in the UK was set up by the Govt, Wessely is on the Advisory Panel. Crawely is Medical Advisor to AYME.

    From the Science Media Centre's press release on the PACE trial.

    "Dr Esther Crawley, Consultant Paediatrician and Clinical Lead for the Bath
    Specialist Paediatrics Chronic Fatigue Syndrome/ME Service, said:

    All children with chronic fatigue syndrome and their parents are desperate
    for new research to understand how to treat this condition. The next step is
    to do a study like this for children to find out if these treatments work."
  7. simpsons

    simpsons Member

    lyn gilderdale has been discussed by her mother in the press on tv radio and in the daily mail evening standard in london

    the abuse this young girl suffered at the hands of the mental health lobby with nurses and drs alike abusing her is typical of the wessely crawley school

    ester crawley has no idea on medial issues or she would not be considering the lp,

    the recent protests in the uk regarding xmrv worried them and they quickly produced several non replication studies and put them out in a blaze of planned publicity.

    the uk government is planning to privatise the nhs and so lightening process would be on the list for drs to sub contract the treatment of uk patients out to.

    this would make millions for the lp quite pos if they can get the study they are doing to show false positive as they have done with the pace trial