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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Is it true AfME are funded by the Department of Health? So they will never side against the establishment.
Years ago they were funded by DOH.No, I don't believe it is. I was looking at their accounts recently an couldn't see anything from the DoH.
A big chunk of the income is from subs.
I sent an email to Sonya last week. She replied that someone had signed up members of staff of AfME to the petition and so she was going to ignore it. I responded, but she ignored me and has not replied further.
The exchange is here. https://justpaste.it/171kg
someone had signed up members of staff of AfME to the petition
@JohntheJack Thanks for your effort in arranging this.
How many false signatures were they? Given she has used the reason of false signatures as a get out of clause for not responding at all to your reasonable request , I am concerned AFME could be just using this as an excuse. How can we trust that they did not do this to be able to use as an excuse. I would not put it past them.
I don't know. There were 294 listed. Someone said the vote doesn't count unless the email is verified. Even if that's not true, there were likely 290 real signatures.
On what basis is she making that allegation then??
John's emails were reasonable, the curt reply and lack of further engagement was not. I don't think things are going to change at this charity. I've never been a member or given a penny to them, but those who are still members might want to reflect on the continued inability to stand up to vested interests. I don't know why MER UK pulled out the CMRC - so far it seems to be a lot of supposition - but perhaps patients still engaged with AFME need to pull out from that organisation. I know newer patients are particularly vulnerable to being taken in, but I don't think this organisation is going to change in a direction that is in the best interests of the patients.
Apart from the fact her child now has ME and therefore they now have the same interests as everyone with ME. How could AFME and SC not be "in the best interests of patients" from now on. Our interests are fully aligned and nothing to worry about now.
I am not sure about the logic of this. The child has apparently had ME for some time which would suggest that interests should have coincided over a similar period. There has been no obvious indication of this.
I am not prepared to make comments about the alleged conduct of an individual at an event at which neither I nor any member of Action for M.E. was present. We did not have any input into the content of the presentation and, given that she has no formal role within the charity, do not speak for Esther.
We are very clear about the extent of our relationship with her: we fund a severe paediatric M.E. surveillance study on which she is the principal investigator, and we work alongside her as part of the M.E./CFS Epidemiology and Genomics Alliance.
I can honestly say that for everyone who asks us to shout louder about PACE, there is another begging us to not get distracted.
I’m not able to devote any more time to answering questions I’ve already addressed.
Hi John – I can confirm that with the CMRC, I always represent the range of views presented to the charity whether I agree, disagree or have no view. I also always make it clear where a view I am putting forward is my own.
Thanks
Sonya Chowdhury, Chief Executive, Action for M.E.