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Petition AYME to Denounce PACE and SMILE

Messages
26
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.
 
Messages
22
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!
 

Enid

Senior Member
Messages
3,309
Location
UK
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.
 
Messages
646
http://www.thepetitionsite.com/takeaction/485/900/462/ care2 petitionsite

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

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.

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
 
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26
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
 
Messages
646
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

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
 

Angela Kennedy

Senior Member
Messages
1,026
Location
Essex, UK
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

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?
 

Min

Guest
Messages
1,387
Location
UK
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.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
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

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.


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

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.

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.

I totally agree with Angela.
 

Enid

Senior Member
Messages
3,309
Location
UK
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.
 
Messages
646
In vitro! same person from the MEA website I presume?

From the same test tube, though one of us is probably a contaminant

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.

I wouldn't usually reference something personal on forum like this, but as you've opened the door to 'other forums', and given the nature of this thread:

You've been around the online M.E carnival for a long time ?, you are involved as a parent ? Surely by now your offspring has reached an age when they can speak for themselves ? Isn't it time you stopped hanging out with M.Eers and engaged with something less vicarious ? I don't mean these questions to be insulting, the issue here is whether young people (lets not define them as merely the passivised 'children') have their views on how illness affects them and what they want in treatment terms to be 'valued'.

It's not a question of accepting AYME as beyond criticism, AYME may be failing in all sorts of ways, but it can only be tested in terms of success or failure if (what AYME claims as) its members are addressed, rather than merely treating AYME as another bureacratic structure. That of course requires effort - any fool can start off an internet petition and multiple other fools need expend even less effort to sign the damn thing - actually engaging with people - in this case the young people that AYME claims are its members involves consideration and commitment to explore the valued views of others.

AYME matters because no other M.E/CFS organisation claims to have young person representation, and young people with M.E are especially 'silenced', not only do they have to deal with the silencing effect of 'medical authority' that so many contributors to this forum complain about - they also have to deal with the fact that parents and carers consistently speak for them (does he take sugar ? oh no he's not allowed !!!). Whether they are right or wrong, young people with M.E have a right to be heard; having a bunch of wrinklies petitioning an organistion that offers young people some kind of voice, effectively requiring the organisation and its members to agree "with us who know better", is not just ineffective - it's plain weird.

IVI
 

Angela Kennedy

Senior Member
Messages
1,026
Location
Essex, UK
From the same test tube, though one of us is probably a contaminant



I wouldn't usually reference something personal on forum like this, but as you've opened the door to 'other forums', and given the nature of this thread:

You've been around the online M.E carnival for a long time ?, you are involved as a parent ? Surely by now your offspring has reached an age when they can speak for themselves ? Isn't it time you stopped hanging out with M.Eers and engaged with something less vicarious ? I don't mean these questions to be insulting, the issue here is whether young people (lets not define them as merely the passivised 'children') have their views on how illness affects them and what they want in treatment terms to be 'valued'.

It's not a question of accepting AYME as beyond criticism, AYME may be failing in all sorts of ways, but it can only be tested in terms of success or failure if (what AYME claims as) its members are addressed, rather than merely treating AYME as another bureacratic structure. That of course requires effort - any fool can start off an internet petition and multiple other fools need expend even less effort to sign the damn thing - actually engaging with people - in this case the young people that AYME claims are its members involves consideration and commitment to explore the valued views of others.

AYME matters because no other M.E/CFS organisation claims to have young person representation, and young people with M.E are especially 'silenced', not only do they have to deal with the silencing effect of 'medical authority' that so many contributors to this forum complain about - they also have to deal with the fact that parents and carers consistently speak for them (does he take sugar ? oh no he's not allowed !!!). Whether they are right or wrong, young people with M.E have a right to be heard; having a bunch of wrinklies petitioning an organistion that offers young people some kind of voice, effectively requiring the organisation and its members to agree "with us who know better", is not just ineffective - it's plain weird.

IVI

Unfortunately, I've amassed an awful lot of knowledge all this time that shouldn't be wasted; my daughter still needs full-time care and support and advocacy even now; she supports my work 100%; she's too ill to take part in forums herself but takes part in other advocacy initiatives; other people, adults with ME, support my work as well.

Those are all excellent reasons for me to carry on.

Accusing me of vicarious living- that's hilarious- obviously it is intended as an insult- or you would spectaclularly stupid. I don't think that's the case.

Who are you, and, apart from your specific trend of defending certain charities from legitimate critique, why are you here?

AYME actually does silence dissent from those children who don't agree with them. Or do you think all children with ME support PACE, The Lightning Process etc.? Don't be silly.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I don't mean these questions to be insulting
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.

...the issue here is whether young people (lets not define them as merely the passivised 'children') have their views on how illness affects them and what they want in treatment terms to be 'valued'.

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.

AYME may be failing in all sorts of ways, but it can only be tested in terms of success or failure if (what AYME claims as) its members are addressed, rather than merely treating AYME as another bureacratic structure.

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.

That of course requires effort - any fool can start off an internet petition and multiple other fools need expend even less effort to sign the damn thing - actually engaging with people

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.

AYME matters because no other M.E/CFS organisation claims to have young person representation
I think the TYMES trust (The Young ME Sufferers Trust) also represents young people with ME.

... they also have to deal with the fact that parents and carers consistently speak for them (does he take sugar ? oh no he's not allowed !!!). Whether they are right or wrong, young people with M.E have a right to be heard; having a bunch of wrinklies petitioning an organistion that offers young people some kind of voice, effectively requiring the organisation and its members to agree "with us who know better", is not just ineffective - it's plain weird.

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.
 

Angela Kennedy

Senior Member
Messages
1,026
Location
Essex, UK
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.

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.
 

jace

Off the fence
Messages
856
Location
England
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?
 

Min

Guest
Messages
1,387
Location
UK
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/

Wednesday, 01 September 2010 09:08

On 4 August 2010 The ME Association and The Young ME Sufferers Trust (Tymes Trust) issued a joint statement that expressed a number of concerns about the proposal to carry out a feasibility study, involving children and adolescents with ME/CFS, into the use of the Lightning Process.


We also sent a copy of this statement to the Department of Health with a request that it should be forwarded to the ethics committee that will be examining this proposal. This is because we believe the ethics committee should be aware of widespread concerns being expressed by people with ME/CFS about the trial. Our statement also contained information about an adjudication from the Advertising Standards Authority and interventions by several trading standards officials both in relation to therapeutic claims being made for the Lightning Process which we believe the ethics committees must be aware of when reviewing this proposal.

The Department of Health have refused to forward this information to the ethics committee on the grounds that

We expect research ethics committees to consider all the relevant evidence, but they have to be seen do so objectively and impartially and to arrive at their decisions independently if they are to command public confidence and the credibility of all the stakeholders concerned. For this reason, it would be inappropriate, as well as potentially counterproductive, expressly to bring your joint statement to the attention of the research ethics committee reviewing the proposal for this project..

We profoundly disagree with the DoHs reasoning, which we consider carries serious implications for the integrity of the scientific process. Whether or not an ethics committee membership is confidential, it should still be possible for essential evidence to be supplied to them. How else can the public be assured that an ethics committee has all the relevant evidence to consider before reaching its decision?

The two charities are unable to forward this statement direct because the identity and location of the relevant ethics committee is not in the public domain.

We are now considering what further action to take.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
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?

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!
 
Messages
26
Unfortunately, I've amassed an awful lot of knowledge all this time that shouldn't be wasted; my daughter still needs full-time care and support and advocacy even now; she supports my work 100%; she's too ill to take part in forums herself but takes part in other advocacy initiatives; other people, adults with ME, support my work as well.

Those are all excellent reasons for me to carry on.

.

Not that you need to defend yourself in any case. Very good work is done by people who I (and no doubt many other sufferers) are more than happy to have done for me/them vicariously.
 

Martlet

Senior Member
Messages
1,837
Location
Near St Louis, MO
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.