Petition AYME to Denounce PACE and SMILE

[Snow Leopard]

- 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 !!!).

This is quite frankly a strange comment and I don't understand what you are suggesting. We have all had parents (or legal guardians), and those parents set the rules. Are you suggesting that parents who have ill children with alternative dietary needs are bad parents?
If you are reflecting on bad parenting in general, then what does this comment have to do with the CFS/ME illness?

If you want 'science based' advice, then the credibility of an organisation that advocates pseudoscience like 'Lightening therapy' is certainly in question and I wouldn't recommend trusting the advice that they provide.

 

[In Vitro Infidelium]

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.

1. The forum rules tab has been inaccessible from before I registered with this forum

2. At no point did I disparage care-givers, or even 'carers'. Although, unless the forum rules actually prohibit asking such questions, I certainly cosider it reasonable to to raise questions about the general relationship between disabled people and those whose role it is to support them, whether that role is defined by choice or commerce.

3. When writing anything other than the most annodyne prose, it is impossible not offend someone somewhere, articularly if one seeking to get to grips with entrenched views. I am offended by 90% of what I read on these forums, and unless what has been written breaks some law then my being offended is irrelevant, the question whether one writes with civility, I said my intention was not to insult, it is open to others to say I was lying, but I maintain that what I wrote was not insulting, it was delivered civily and was about elucidating answers to valid questions.

IVI

 

[In Vitro Infidelium]

This is quite frankly a strange comment and I don't understand what you are suggesting. We have all had parents (or legal guardians), and those parents set the rules. Are you suggesting that parents who have ill children with alternative dietary needs are bad parents?
If you are reflecting on bad parenting in general, then what does this comment have to do with the CFS/ME illness?

I take it you didn't follow the link to http://www.ncbi.nlm.nih.gov/pubmed/1830484 = By speaking over the heads of handicapped people we reveal our underlying beliefs and assumptions regarding mental and physical perfection. We must challenge such beliefs if we are to appreciate the important contribution the disabled make to society and we must provide services for them which respect and empower them rather than further disable them

Does he take sugar is a long established term in disabled advocacy, cutting across all forms of disabilty, it describes how disabled people are disempowered by assumptions of what 'caring' entails. Of course caring for sick and/or disabled children involves different dialogues and different levels of necessary interventions, but sickness and disability demand that particular attention has to be paid toward ensuring the appropriate autonomy of young people in their 'ownership' of how the challenges they face are dealt with.

To pursue the literal approach you've taken to the 'symbolic' point I was making "does he take sugar ? oh no he's not allowed !!!", one can set it in a realistic context, - a ten year old with type 1 diabetes in the company of two adults A and B. The adults have choices of how to conduct convesation. Adult A can choose to address the youn person directly, as though he/she was fully a part of the social interaction that is play, or Adult A can choose to treat the young person as lacking any autonomy, and address the question to Adult B.

My expectation is that any ten year old with the power of communication should be respected as having the autonomy to give a reasoned reply, of course ten year olds do not always want to be reasonable, but the process of assisting them gain maturity involves allowing that they have autonomy until they demonstrate instances of being unwilling to exercise it with reason.

To continue the scenario - If adult A does address the question of 'sugar' to the young person, the young person then has an opportunity to respond on the basis of their knowledge of their medical condition - if mature enough, if having been empowered by their carer, if having been involved by carers and medical professionals in the investigation of and treatment of diabetes, then there is a very strong likelihood that the young person will assert their own best interests by simply saying 'no thank you to the sugar' or perhaps ruefully saying ' no I can't I'm diabetic'. Of course it is always open to Adult B to step in, but in doing so they are removig the opportunity for the young person to assert control over their own 'illness identity'.

What really bothers me about this whole thread is that those who find my arguments so unpalatable, have made no effort to take on board that the voices of young people are very rarely heard in the 'wrinkly' dominated forums, and here we have a thread which is about a majoritarian (the wrinklies will always win because there are more of them) petition that is about telling a 'young person owned' organisation to "agree with us or shut up". And all the defences of that position are based around addressing the adults in that 'young person owned' organisation, not about addressing what the young people actually think or believe.

If you want 'science based' advice, then the credibility of an organisation that advocates pseudoscience like 'Lightening therapy' is certainly in question and I wouldn't recommend trusting the advice that they provide.

The issue here isn't about advice - it's about the voices of young people. I very much wish that AYME was not assocaited with LT, but if I want to affect that situation, then the appropriate way to do it is to address the members of the organisation - not engage in distant disapprobation. It's not as if AYME isn't contactable, anyone can email them and ask what the members think, and maybe even get a 'young person' to engage with the 'wrinklies', though if I were one of the the young, on the basis of the lack of respect given from this quarter, I'd be inclined to tell the oldies to all 'do one'.

IVI

 

[Angela Kennedy]

I take it you didn't follow the link to http://www.ncbi.nlm.nih.gov/pubmed/1830484 = By speaking over the heads of handicapped people we reveal our underlying beliefs and assumptions regarding mental and physical perfection. We must challenge such beliefs if we are to appreciate the important contribution the disabled make to society and we must provide services for them which respect and empower them rather than further disable them

Does he take sugar is a long established term in disabled advocacy, cutting across all forms of disabilty, it describes how disabled people are disempowered by assumptions of what 'caring' entails. Of course caring for sick and/or disabled children involves different dialogues and different levels of necessary interventions, but sickness and disability demand that particular attention has to be paid toward ensuring the appropriate autonomy of young people in their 'ownership' of how the challenges they face are dealt with.

To pursue the literal approach you've taken to the 'symbolic' point I was making "does he take sugar ? oh no he's not allowed !!!", one can set it in a realistic context, - a ten year old with type 1 diabetes in the company of two adults A and B. The adults have choices of how to conduct convesation. Adult A can choose to address the youn person directly, as though he/she was fully a part of the social interaction that is play, or Adult A can choose to treat the young person as lacking any autonomy, and address the question to Adult B.

My expectation is that any ten year old with the power of communication should be respected as having the autonomy to give a reasoned reply, of course ten year olds do not always want to be reasonable, but the process of assisting them gain maturity involves allowing that they have autonomy until they demonstrate instances of being unwilling to exercise it with reason.

To continue the scenario - If adult A does address the question of 'sugar' to the young person, the young person then has an opportunity to respond on the basis of their knowledge of their medical condition - if mature enough, if having been empowered by their carer, if having been involved by carers and medical professionals in the investigation of and treatment of diabetes, then there is a very strong likelihood that the young person will assert their own best interests by simply saying 'no thank you to the sugar' or perhaps ruefully saying ' no I can't I'm diabetic'. Of course it is always open to Adult B to step in, but in doing so they are removig the opportunity for the young person to assert control over their own 'illness identity'.

What really bothers me about this whole thread is that those who find my arguments so unpalatable, have made no effort to take on board that the voices of young people are very rarely heard in the 'wrinkly' dominated forums, and here we have a thread which is about a majoritarian (the wrinklies will always win because there are more of them) petition that is about telling a 'young person owned' organisation to "agree with us or shut up". And all the defences of that position are based around addressing the adults in that 'young person owned' organisation, not about addressing what the young people actually think or believe.



The issue here isn't about advice - it's about the voices of young people. I very much wish that AYME was not assocaited with LT, but if I want to affect that situation, then the appropriate way to do it is to address the members of the organisation - not engage in distant disapprobation. It's not as if AYME isn't contactable, anyone can email them and ask what the members think, and maybe even get a 'young person' to engage with the 'wrinklies', though if I were one of the the young, on the basis of the lack of respect given from this quarter, I'd be inclined to tell the oldies to all 'do one'.

IVI

You concern about 'the children' is admirable. But, as has already been said to you, AYME do not represent the interests of all children with ME/CFS, and WILL NOT represent the interests of those who disagree with their promotion of CBT/GET, psychogenic explanations, 'Lightning Therapy' and 'Reverse Therapy' etc.

Sadly I know this because I have supported a child to make sure her interests are properly represented in all dealings she had, under her direction and only with her consent, who had reason to be horrified at AYME's so called 'representation'.

Claiming people here are 'wrinklies' who aren't frankly 'down with the disabled kids' (which is the effect you've constructed here) is a red herring.

AYME do not represent the interests of all of the children they claim to represent. Even an AYME member could not be said to represent my daughter's interests, especially when some of those young people publicly representing AYME claim they have 'chronic fatigue' and that 'it's the best thing that happened to them' and LURVE CBT/GET, which was just one situation (of many) that made my daughter extremely unhappy with AYME.

Like all the mainstream charities, AYME's behaviour affects people with ME (in this case children). They should be accountable to everyone whose interests they may be adversely affecting (in this case, not only children with ME but the whole ME community). Raising objection to their behaviour is not being mean or patronising to the 'young peoples' with disabilities.

 

[Angela Kennedy]

1. The forum rules tab has been inaccessible from before I registered with this forum

2. At no point did I disparage care-givers, or even 'carers'. Although, unless the forum rules actually prohibit asking such questions, I certainly cosider it reasonable to to raise questions about the general relationship between disabled people and those whose role it is to support them, whether that role is defined by choice or commerce.

3. When writing anything other than the most annodyne prose, it is impossible not offend someone somewhere, articularly if one seeking to get to grips with entrenched views. I am offended by 90% of what I read on these forums, and unless what has been written breaks some law then my being offended is irrelevant, the question whether one writes with civility, I said my intention was not to insult, it is open to others to say I was lying, but I maintain that what I wrote was not insulting, it was delivered civily and was about elucidating answers to valid questions.

IVI

Look, I didn't report you to a moderator, let me make that clear.

But your comments were meant to insult me as a caregiver. You were disparaging my involvement in ME/CFS politics now my daughter is an adult, you accuse me of living a certain way 'vicariously'. Your 'questions' about how people support sufferers was meant to cast aspersions upon my involvement- which is neither 'choice' (in that the decision to continually support someone you love because otherwise they will die, or be thrown into abusive 'care' institutions, or become homeless, or live a life of abject sorrow otherwise) nor 'commerce'.

You kindly left me your blog url (the 'CFS mirror') in a personal correspondence through this forum. It is clear you are writing with some contempt for many in the community (and their supporters). Incorrectly (for various reasons) attempting to present the community in general as cultish, for example, betrays a position that many will find objectionable and - well -hostile.

 

[Snow Leopard]

It's not as if AYME isn't contactable, anyone can email them and ask what the members think, and maybe even get a 'young person' to engage with the 'wrinklies', though if I were one of the the young, on the basis of the lack of respect given from this quarter, I'd be inclined to tell the oldies to all 'do one'.

This is extremely ironic given how the voice of patients with CFS/ME is rarely listened to in general.

I agree that the children should be allowed to give their input. I bet you'll find that most of the children will not believe that CBT/GET will cure them of their symptoms either.

What are you personally doing to assist us in having a voice with regards to rectifying the gross underfunding of CFS research compared to other diseases?

 

[Esther12]

I don't really understand why anyone would assume AYME represents the preferences of young people with ME, just because they claim to do so. All manner of organisations claim to represent all manner of people. It's not normally true.

"Does he want LP?"

There are fair points to be made about whether these sorts of petitions really move discussions foreward, and it's always good to have people putting foreward minority positions on a forum where many members have similar experiences and beliefs, but this sort of thing?: "Isn't it time you stopped hanging out with M.Eers and engaged with something less vicarious ?"

Did I miss something? What justified that comment? Because Angela asked if you posted on MEA?

 

[sproggle]

I just want to bump this thread so people will see it and its original intention: to promote a well worded petition which a friend of mine took great pains to put together in order to help protect children with ME in the UK from the very dangerous so called treatments included in the PACE trial and SMILE trial -which campaigners in the UK are still trying hard to have stopped.

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

It is difficult enough for adults with ME to get their opinions across to those who promote these interventions let alone children who are much more easily persuaded into believing it is up to them to overcome their ME through these so called treatments and so will not see it as being harmful or abusive until long after the event.

Please, if you agree with the petition, sign it and share it widely. We need to send AYME the message that their promotion of this harmful and unscientific approach to ME is unacceptable and needs to change now.

Thanks.