It looks as though Solve ME are roaring on regardless. I hope members here will attend the November 10 webinar and try to explain why this is poor quality "research" that actually harms patients and the concept of 'patient-centred design'.
I had that meeting with Emily at Solve ME, and clearly achieved nothing. I don't know how we can stop them serving up people with ME/CFS on a platter to the marketers of bogus gadgets.
Solve ME is probably the main national US ME/CFS patient charity, and they appear to have abandoned the most basic of research principles. Perhaps if they got that message from many members they would think a bit harder?
I had that meeting with Emily at Solve ME, and clearly achieved nothing. I don't know how we can stop them serving up people with ME/CFS on a platter to the marketers of bogus gadgets.
There's the October 20 webinar too where they say that they are aiming to rebuild the research infrastructure that the field runs on.
Solve ME is probably the main national US ME/CFS patient charity, and they appear to have abandoned the most basic of research principles. Perhaps if they got that message from many members they would think a bit harder?
