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Petition AYME to Denounce PACE and SMILE

Discussion in 'Action Alerts and Advocacy' started by Noro, Mar 3, 2011.

  1. Noro

    Noro

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    http://www.thepetitionsite.com/takeaction/485/900/462/

    care2 petitionsite

    Association of Young People with ME (AYME) - Denounce PACE and SMILE

    * signatures: 20
    * signature goal: 500
    * Target: The Association of Young People with ME (AYME)
    * Sponsored by: Action Now

    This petition calls for the Association of Young People with ME (AYME) to take the necessary action to address the serious concerns outlined below, or cease operating as a charity for children and young people with ME.

    Specifically:
    -We call upon AYME to retract its statements about the PACE trial.
    -We call upon AYME to withdraw its support for the pilot study known as SMILE.

    SUMMARY OF CONCERNS

    AYME stands alone in its welcome of the results of the study known as PACE, and in its support of a pilot study known as SMILE, led by its medical advisor, Dr. Esther Crawley.

    The statements issued on 18th February 2011 by AYME clearly show its support for the conclusions of the PACE trial, despite a raft of scientific and patient evidence to the contrary.

    -AYME's call for studies of CBT and GET with children and young people with ME, in the face of all the contradictory evidence, is irresponsible and is counter-productive to the ME patient community's call for biomedical research into causes and treatments for both adults and children with ME/CFS.

    -AYME is giving support to another trial (SMILE) that its medical adviser is currently involved in - one in which children are test subjects for a commercial training programme that is based on an unproven hypothesis of the cause of ME/CFS, and which relies on the same biopsychosocial model of ME/CFS as CBT and GET.

    -In its statements about PACE, AYME gives inaccurate and misleading information which is potentially harmful to children and young people with ME/CFS - see examples listed under supporting information (via link below). We believe this to be a very serious breach of trust and duty of care.

    -We believe that the statements made by AYME show it to be an organisation that can no longer be trusted to serve the best interests of children and young people with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome, or their families and carers.

    For the full wording of this petition, including further detail of concerns about AYME's involvement with a pilot study (SMILE) of The Lightning Process on children with ME/CFS, and examples of misleading and inaccurate information in AYME's statements on PACE, please click here: http://www.keepandshare.com/doc/263...-petition-pdf-march-3-2011-10-54-am-133k?da=y


    CALL FOR ACTION

    We, the undersigned, call for the Association of Young People with ME (AYME) to take the necessary action to address the serious concerns outlined above, or cease operating as a charity for children and young people with ME.
     
  2. twopenneth

    twopenneth

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    Thanks Noro. You beat me to it. How do you start a thread like this? It's taken me several minutes just to log into P.R. due to a glitch with my pass word!
     
  3. Enid

    Enid Senior Member

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    All signed. The welcome of one alone National Charity in the UK (Crawley involved ?) of PACE has done the thousands of ME sufferers here much damage. And PACE world wide damage.
     
  4. In Vitro Infidelium

    In Vitro Infidelium Guest

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    What is the point of creating a public petition of a member owned organisation, especially a an organisation owned by young peoplehttp://www.ayme.org.uk/article.php?sid=9&id=91 ?

    You may not like the fact that AYME is advised by Esther Crawley, you may not like AYME's position on PACE, but those are matters for AYME's members. There are few enough patient organisations ( related to any illness not just M.E) that empower young people and while AYME may be limited in its achievements, its members still deserve respect and acknowledgement. If you have a complaint about AYME, address its members, ask them to consider your arguments, not create some impersonal petition as though you were addressing some anonymous Government agency or faceless multinational.

    IVI
     
  5. Noro

    Noro

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    People are free to air their serious concerns when a charity promotes potentially damaging treatment to children and young people.

    Research results that are pure spin, empowering to young people???? What a twisted take you have on things
     
  6. In Vitro Infidelium

    In Vitro Infidelium Guest

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    My take is that the members of AYME have the capacity to decide for themselves what they consider helpful or harmful. If you have a problem with their conclusions, write to the members of AYME and ask them why they have come to the conclusions they have, or even whether the views of the members have been been properly represented. As far as I'm concerned the views of the AYME members are important, whether or not I agree with them, because of the very fact they are young people, whose views are otherwise censored by those who seek to speak on their behalf.

    I agree that there is twisted thinking involved, but I'm damned sure it's not coming from me.

    IVI
     
  7. Angela Kennedy

    Angela Kennedy

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    There's no real membership as such. And children that are not part of Ayme's magazine distribution list are still adversely affected by their misguided support of the PACE trial. Parents of children adversely affected still have to pick up the pieces of AYME's mistakes. I'd say there's lots of reasons to criticise AYME's stance, and a LOT of people adversely affected who are perfectly justified in raising objections.


    In vitro! same person from the MEA website I presume?
     
  8. Min

    Min Guest

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    Thank you, I have signed it. I am most concerned that vulnerable children will be coerced by the Lightning Process quackery into pretending that they have recovered, into ignoring their symptoms and into doing far more that they are really capable of.


    I am concerned that they will wrongly be classified as a 'success' statistic for the questionable SMILE study, and that the subsequent and inevitable crash they experience in their health weeks or months later may be permanent. Many adults have reported this outcome from LP.

    Children want to please adults and will easily be fooled into co-operating with this particularly nasty and dangerous form of brainwashing.
     
  9. Bob

    Bob

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    In Vitro Infidelium, I completely disagree with you on this.
    AYME is an ME patient advocacy organisation which not only represents its members, but also lobbies government, and contributes towards the national conversation about ME.
    This petition is also part of that national conversation.
    If we feel that AYME are misrepresenting their members, if they have a membership, or misrepresenting ME generally, then we have every right to speak up about these issues, in whatever way we choose. It is perfectly valid for anyone to communicate with an organisation, or to put pressure on them.
    The wording of the petition is perfectly respectful to both the organisation and its members. Indeed, the petition is seeking to increase the accountability of the organisation thus hoping to increase the protection of its members.


    You are assuming that all the members are fully informed, and understand the complexities of all the issues raised in the petition. This might not be the case, and this petition might help bring people's attention to the issues. It's not really practical, or possible, for us to write to every member of AYME, is it?! So it is sensible to communicate with the organisation itself.

    I totally agree with Angela.
     
  10. Enid

    Enid Senior Member

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    Quite agree Angela. And the worry is that this costly and overlong "exercise" PACE which does not seek to understand the illness will be "rolled out" as a "model" treatment when it has already failed the larger ME community.
     
  11. Sam Carter

    Sam Carter Guest

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    Dr Crawley and AYME are not well respected (or trusted) because, amongst other things, they have designed/supported a trial of woo-therapy on children.
     
  12. In Vitro Infidelium

    In Vitro Infidelium Guest

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  13. Angela Kennedy

    Angela Kennedy

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  14. Bob

    Bob

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    In Vitro, the way I read your comments is that they are insulting, and are inappropriately personal.
    May I suggest that you come to this forum afresh, without bringing baggage with you from other forums?
    It is better to stick to the issues, rather than making sharp and very personal observations about other forum members.

    Yes, in an ideal world, children would be nurtured in such a way that they could contribute to the making of fully informed choices about the treatments that they are to receive.
    Unfortunately, leaders of some organisations seem intent on promoting a certain paradigms that many in the ME community believe offer no service to ME patients.
    Therefore it's not a case of viewing children as passive recipients of care, but it's a case of making sure that all patients are fully informed about their disease and are made aware that not all doctors or leaders of organisations necessarily know what is best for ME patients.

    Like I said before, we are not in a position to address the individual members of the organisation, but we are in a position to attempt to put pressure on the organisation itself, and to engage in dialogue with the organisation.

    How effective are petitions? Who knows? You may have a point that a petition is not the most helpful way to engage with an organisation, but it is a starting point.

    I think the TYMES trust (The Young ME Sufferers Trust) also represents young people with ME.

    Well, carers generally do look out for the interests of the people they care for, and parents usually do look out for the interests of their children.
    Children and ME patients aren't always in a position to protect themselves, or to fight for their own interests, and so it is vitally important that our community looks out for the interests of each other.

    I think it is rather offensive, and disprespectul, to suggest that parents who offer full time care and advocacy for their children are equivalent to over-protective parents who control every aspect of their child's life. I think it shows a great deal of disrespect and ignorance to suggest that parents of ME patients do not have very full, healthy and well-rounded relationships with their children.

    If you think that children under 10 years old are in a positiion to protect their own interests, then I don't know what world you live on. Yes, they maybe able to make some choices about their own medical care, but they can only make informed choices if they are presented information in a fair and honest way.

    ME is such a complex illness, with so much politics involved in the treatment and care of children, that I think we all have a right and a duty to speak up, in whatever way we think is appropriate.

    Therefore, In Vitro, you are entitled to your opinions about this suject, but I strongly disagree with them.
     
  15. Angela Kennedy

    Angela Kennedy

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    Thank you very much Bob for these wise comments. It is shocking to see the psychological tactics often used by the medical profession against parents who support their children (whether child or adult status) also being used against them on an advocate forum.

    AYME obviously have 'wrinklies' claiming authority to speak for children - even though parents and children have objected to their support of Reverse therapy, Lightning therapy, CBT/GET over the years, these have never, to the best of my knowledge, been represented by AYME.
     
  16. jace

    jace Off the fence

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    AYME's president is Esther Rantzen, a wrinkly if you like, and a person who has had headlines proclaiming her daughter Emily to be cured of ME four times now, by various methods including the Lightning Process and giving up gluten.

    Now that Esther no longer, according to herself, has a child with ME, will she step down from the presidency of AYME?
     
  17. Min

    Min Guest

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    The Young ME Sufferers Trust, who represent UK children and young people with M.E., joined with the ME Association in two statements condemning the SMILE trial, here's the second:

    http://meagenda.wordpress.com/2010/...-me-association-and-young-me-sufferers-trust/

     
  18. Bob

    Bob

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    Yes, it's interesting that Esther Rantzen has placed herself in a position of authority, for such a long time, in order to supposedly represent the interests of children with ME.
    I assume that she based her representation on the expereiences that she had as a mother of a daughter with ME.
    Now that they are saying that her daughter has recovered since discovering that she has Coeliac disease, I wonder if Esther Rantzen will question whether she was the best person to represent a disease that she had no direct experience of, but that she was mistaking for another disease.
    And I wonder if she will rethink her opinions about the Lightning Process, seeing as even the 'best' psychologists would struggle to convince people that a positive thinking course is able to cure Coeliac disease!
     
  19. Ian McLachlan

    Ian McLachlan

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  20. Martlet

    Martlet Senior Member

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    Moderator: In Vitro, your comments are offensive, whether or not you intended them that way. I will leave others to argue the points specific to this thread, but please do not disaparage care-givers! Instead, spend some time reading the forum rules, then you won't run afoul of them again.
     

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