Patient organisations in ME and CFS seek only understanding
http://www.100md.com
《英国医生杂志》
EDITOR—To compare general practitioners' attitudes to patients with chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME) and those with irritable bowel syndrome was disappointing in the study by Raine et al.1 Particularly disappointing was that the study was conducted in the months after the chief medical officer recognised—with considerable attendant publicity—the severity and impact of chronic fatigue syndrome or myalgic encephalomyelitis on the lives of those affected.2
One outcome of the study was that pressure groups were perceived as influencing clinical encounters, making it harder to legitimise the symptoms. That the authors labelled patients' organisations "pressure groups" was interesting in itself.
The organisations cover a range of views on the illness and the solutions needed. This organisation carries out an information role for patients and professionals and provides a range of services no different from that of any other medium sized charity (www.afme.org.uk). We campaign vigorously of course for recognition of chronic fatigue syndrome and myalgic encephalomyelitis and for funding to remedy years of neglect in this field.
We are not "antidoctor" and our members mostly view their general practitioners as supportive and understanding but faced with a complex illness and lacking a toolkit to help.
Far from patients' organisations wishing to politicise the consulting room, we simply ask for a little more understanding, mixed with a little humility and matched with an eagerness to obtain training and information about diagnosis and treatment.
We do not seek a special status, just that people who are ill with chronic fatigue syndrome or myalgic encephalomyelitis should be treated with the standard of care and professionalism that the severity and impact of their illness merits. Is this politics?
Chris Clark, chief executive
Action for ME, London EC1M 9BL chris@afme.org.uk
Competing interests: CC is chief executive, Action for ME.
References
Raine R, Carter S, Sensky T, Black N. General practitioners' perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: qualitative study. BMJ 2004;328: 1354-7. (5 June.)
CFS/ME Working Group. Report to the chief medical officer of an independent working group. www.dh.gov.uk/assetRoot/04/06/49/45/04064945.pdf (accessed 19 Jun 2004).
One outcome of the study was that pressure groups were perceived as influencing clinical encounters, making it harder to legitimise the symptoms. That the authors labelled patients' organisations "pressure groups" was interesting in itself.
The organisations cover a range of views on the illness and the solutions needed. This organisation carries out an information role for patients and professionals and provides a range of services no different from that of any other medium sized charity (www.afme.org.uk). We campaign vigorously of course for recognition of chronic fatigue syndrome and myalgic encephalomyelitis and for funding to remedy years of neglect in this field.
We are not "antidoctor" and our members mostly view their general practitioners as supportive and understanding but faced with a complex illness and lacking a toolkit to help.
Far from patients' organisations wishing to politicise the consulting room, we simply ask for a little more understanding, mixed with a little humility and matched with an eagerness to obtain training and information about diagnosis and treatment.
We do not seek a special status, just that people who are ill with chronic fatigue syndrome or myalgic encephalomyelitis should be treated with the standard of care and professionalism that the severity and impact of their illness merits. Is this politics?
Chris Clark, chief executive
Action for ME, London EC1M 9BL chris@afme.org.uk
Competing interests: CC is chief executive, Action for ME.
References
Raine R, Carter S, Sensky T, Black N. General practitioners' perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: qualitative study. BMJ 2004;328: 1354-7. (5 June.)
CFS/ME Working Group. Report to the chief medical officer of an independent working group. www.dh.gov.uk/assetRoot/04/06/49/45/04064945.pdf (accessed 19 Jun 2004).