Esther12
Senior Member (Voting Rights)
I'm not a fan of the AfME statement.
[edit: Maybe I was too hard on that statement because AfME have been so bad at asking tough questions to authority figures in the past? I might come back and re-read this later].
edit 3: There are some things about this response that are sign of a positive step forward from AfME ("given issues with the PACE trial and the unhelpful responses from scientists involved") it's just that they're so many steps behind where they should be that I can overlook them when it probably is worth being grateful for crumbs.
“As we made clear in our response to the NICE guideline scope consultation, Action for M.E. would not accept recommendations of any approach based on the deconditioning hypothesis, the notion of false illness beliefs, or in which patients’ legitimate concerns about the consequences of exercise are dismissed or ignored [this emphasis on the underlying model misses the key point - that the evidence claiming to show CBT/GT are effective treatments is worthless junk-science. They can easily change the emphasis of their model to 'central sensitisation' of something, but that doesn't make it any better].
“So far, the Chair and/or Vice Chair have recruited ten professional committee members, and five lay members (ie. people with lived experience of M.E.). Clearly there is some anger about the majority of the professional appointments, and a lack of trust (which is entirely unsurprising given the lack of progress in the field) [it's not the lack of progress that has caused distrust, it's the fact that so many professionals have shown themselves to be untrustworthy, misleading patients about their level of expertise and ability to treat ME/CFS] in the process, and specifically in some of these individuals.
“While entirely understandable, given issues with the PACE trial and the unhelpful responses from scientists involved in, I do not think it is realistic to accurately judge anyone’s commitment to upholding the Nolan principles (to which all committee members are required to adhere) based solely on selected information found online, anecdotal accounts, and their apparent working relationships with other professionals. [How should we judge whether a professional is fit to serve on this committee? If they have a history of misleading patients, why should they now be given a position with so much power over us? It's impossible to ever be certain about how people will behave in the future, but we can still make judgement about who would be best suited to be given huge power in determining how people with ME/CFS are treated.]
“Instead, I think it would be helpful to understand more about the current views and recent experiences of every committee appointment, and their relationship with people living with M.E. My team and I will be contacting them to ask if they would be willing to share this with us – and you, via our website and social media channels.” [Will this involve asking questions that fail to address any of the key points? I really worry that this is going to be AfME producing propaganda, perhaps accidentally, for promoting those who are going to screw us over. If AfME really want to do something like this in a useful way I hope that they will be reaching out to some people who have a good understanding of these issues and, for example, recognised the problems with PACE when it was published].
“I also want to make it very clear to the five lay members of the Committee – Saran Bonser, Sally Burch, Nicola Kidby, Adam Lowe and Dorinda Jack – that we believe your voices, and your experience, to be a crucial and powerful part of this review. Having attended the two NICE workshops on the guideline so far, and having been in touch with the technical team to share feedback from people with M.E. about the recruitment process, I believe the committee’s Chair and Vice Chair are sincere in their determination to produce a guideline that is fit for purpose, and patient-led.” [The chair and vice-chair played an important role in the appointment of this committee - I think that they should be judged by their actions, not their words].
edit 2: I later posted:
[edit: Maybe I was too hard on that statement because AfME have been so bad at asking tough questions to authority figures in the past? I might come back and re-read this later].
edit 3: There are some things about this response that are sign of a positive step forward from AfME ("given issues with the PACE trial and the unhelpful responses from scientists involved") it's just that they're so many steps behind where they should be that I can overlook them when it probably is worth being grateful for crumbs.
“As we made clear in our response to the NICE guideline scope consultation, Action for M.E. would not accept recommendations of any approach based on the deconditioning hypothesis, the notion of false illness beliefs, or in which patients’ legitimate concerns about the consequences of exercise are dismissed or ignored [this emphasis on the underlying model misses the key point - that the evidence claiming to show CBT/GT are effective treatments is worthless junk-science. They can easily change the emphasis of their model to 'central sensitisation' of something, but that doesn't make it any better].
“So far, the Chair and/or Vice Chair have recruited ten professional committee members, and five lay members (ie. people with lived experience of M.E.). Clearly there is some anger about the majority of the professional appointments, and a lack of trust (which is entirely unsurprising given the lack of progress in the field) [it's not the lack of progress that has caused distrust, it's the fact that so many professionals have shown themselves to be untrustworthy, misleading patients about their level of expertise and ability to treat ME/CFS] in the process, and specifically in some of these individuals.
“While entirely understandable, given issues with the PACE trial and the unhelpful responses from scientists involved in, I do not think it is realistic to accurately judge anyone’s commitment to upholding the Nolan principles (to which all committee members are required to adhere) based solely on selected information found online, anecdotal accounts, and their apparent working relationships with other professionals. [How should we judge whether a professional is fit to serve on this committee? If they have a history of misleading patients, why should they now be given a position with so much power over us? It's impossible to ever be certain about how people will behave in the future, but we can still make judgement about who would be best suited to be given huge power in determining how people with ME/CFS are treated.]
“Instead, I think it would be helpful to understand more about the current views and recent experiences of every committee appointment, and their relationship with people living with M.E. My team and I will be contacting them to ask if they would be willing to share this with us – and you, via our website and social media channels.” [Will this involve asking questions that fail to address any of the key points? I really worry that this is going to be AfME producing propaganda, perhaps accidentally, for promoting those who are going to screw us over. If AfME really want to do something like this in a useful way I hope that they will be reaching out to some people who have a good understanding of these issues and, for example, recognised the problems with PACE when it was published].
“I also want to make it very clear to the five lay members of the Committee – Saran Bonser, Sally Burch, Nicola Kidby, Adam Lowe and Dorinda Jack – that we believe your voices, and your experience, to be a crucial and powerful part of this review. Having attended the two NICE workshops on the guideline so far, and having been in touch with the technical team to share feedback from people with M.E. about the recruitment process, I believe the committee’s Chair and Vice Chair are sincere in their determination to produce a guideline that is fit for purpose, and patient-led.” [The chair and vice-chair played an important role in the appointment of this committee - I think that they should be judged by their actions, not their words].
edit 2: I later posted:
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