I am interested in your views about what it is reasonable to expect of our patient charities in terms of the quality of medical and management advice they provide, on websites and information booklets, and by staff when they speak directly with the public.
An AI query tells me that patient charities should refer people to publicly available clinical guidelines and explain medical terminology. The problem of course is that most of the publicly available information about ME/CFS, even from governments or what should be highly credible sources like the Mayo Clinic, are rather rubbish at best, and dangerous in places.
The CDC pages on ME/CFS are pretty good, there is a little bit of a leaning too much towards pacing up and to the idea that treatments of symptoms can make a substantial difference. But, I think it's good enough - if a patient charity said no more than what is on the CDC in terms of ME/CFS management, I would be happy. The problem is that the CDC ME/CFS pages link to some truly awful resources, such at the IACFSME 2014 Clinical Primer. The NICE ME/CFS Guideline is ok-ish. The Science for ME resources are of course good but many influential people in the ME/CFS community have issues with the forum and we don't have many fact sheets yet.
If you were a trustee or board member of a patient charity, what would you be hoping to achieve in terms of the quality of advice given to patients and their families? What is actually realistic to try to achieve in the short term, bearing in mind that most staff and members (and even board members) are likely to believe what has been repeatedly put about by authoritative sources?
How do we get from the current situation of most patient charities having poor quality information to something better?
Do you have any ideas about how a patient charity board can retain the goodwill of its staff (who probably get a lot of job satisfaction from suggesting things that members can try to feel better) and its members as it moves to providing better information? How can a patient charity compete for hearts, minds and donor funds if its story is that there are no cures, very limited symptom treatments, and many of the beliefs about co-morbidities are not supported by evidence?
Is there a risk that a patient charity moving to a more evidence-based stance will just drive its members and potential members to those charities who seem to offer more short-term hope and more support by being willing to provide advice on things like CCI and the use of a range of medications? On the other hand, is there a substantial legal, moral and reputational risk for organisations and the boards of organisations that continue to provide unevidenced advice?
Is it all such a minefield that most potential good board members are probably deciding that being involved with an ME/CFS patient charity is just way too hard and too risky?
An AI query tells me that patient charities should refer people to publicly available clinical guidelines and explain medical terminology. The problem of course is that most of the publicly available information about ME/CFS, even from governments or what should be highly credible sources like the Mayo Clinic, are rather rubbish at best, and dangerous in places.
The CDC pages on ME/CFS are pretty good, there is a little bit of a leaning too much towards pacing up and to the idea that treatments of symptoms can make a substantial difference. But, I think it's good enough - if a patient charity said no more than what is on the CDC in terms of ME/CFS management, I would be happy. The problem is that the CDC ME/CFS pages link to some truly awful resources, such at the IACFSME 2014 Clinical Primer. The NICE ME/CFS Guideline is ok-ish. The Science for ME resources are of course good but many influential people in the ME/CFS community have issues with the forum and we don't have many fact sheets yet.
If you were a trustee or board member of a patient charity, what would you be hoping to achieve in terms of the quality of advice given to patients and their families? What is actually realistic to try to achieve in the short term, bearing in mind that most staff and members (and even board members) are likely to believe what has been repeatedly put about by authoritative sources?
How do we get from the current situation of most patient charities having poor quality information to something better?
Do you have any ideas about how a patient charity board can retain the goodwill of its staff (who probably get a lot of job satisfaction from suggesting things that members can try to feel better) and its members as it moves to providing better information? How can a patient charity compete for hearts, minds and donor funds if its story is that there are no cures, very limited symptom treatments, and many of the beliefs about co-morbidities are not supported by evidence?
Is there a risk that a patient charity moving to a more evidence-based stance will just drive its members and potential members to those charities who seem to offer more short-term hope and more support by being willing to provide advice on things like CCI and the use of a range of medications? On the other hand, is there a substantial legal, moral and reputational risk for organisations and the boards of organisations that continue to provide unevidenced advice?
Is it all such a minefield that most potential good board members are probably deciding that being involved with an ME/CFS patient charity is just way too hard and too risky?
