Didn’t ask for much. Apart from the linked letter, didn’t get anything. Perhaps I give too much background on mis-management of fibromyalgia by attaching evidence of conflicts of interest? Indifferent reply from the Hon Peter Dutton, Minister for Health …….care? (click to link).
My memo follows:
May 12th is marked as International Fibromyalgia Awareness day, shared with the ME/CFS campaigns. Fibro unfortunately has no national support group, nor any charitable foundation despite affecting between 6-800,000 Australians (predominately women). There are no studies underway in this country, nor is the prevalence known unless by extrapolation from overseas. On the other hand, Griffith University’s NCNED is committed to investigation of Chronic Fatigue. The disparity between the syndromes results from CFS being seen as attributable to a virus, thus specialist treatment is by referral to an immunologist. Whereas the obvious presentation of fibro being musculoskeletal pain resulted in ‘ownership’ by rheumatologists. Unfortunately it is disowned as being their problem – Profs Buchbinder and Roberts-Thomson being amongst those who deny that the disease belongs on the Australian Rheumatologists Association Database or of there being any need for a fibromyalgia register.
As I highlight to the Director of Monash’s Centre for Ethics in Medicine below, such indifference has resulted in failure to investigate the appropriateness of treatments. Pharma is frequently accused of commercial interest overriding patient welfare but it’s obvious that this situation is unique in extending to misconduct – further explained at http://americannewsreport.com/nationalpainreport/drugs-fibromyalgia-good-8823155.html . The ‘Bad Medicine’ of greatest concern is pregabalin, marketed by Pfizer as Lyrica. In meta-analysis the NumberNeededtoTreat consistently exceeds the NumberNeededtoHarm, but research sponsorship suppresses any concern for the fact that this medication does more harm than good for fibromyalgia. And as the attached response by the office of Senator the Hon Fiona Nash advises, there’s no impetus to improve governance in research. I respectfully ask that consideration be given to a statement for May 12th which will provide encouragement to sufferers of this debilitating condition.
Yours sincerely, Geoff Kirwood