HOME
Canberra FM/CFS Page Australian and NZ Information
In 1999, the National Health and Medical Research Council (NH&MRC) set up a Strategic Research Development Committee to help identify priority areas for research funding.
"For many years, research funding has been based on applications made by researchers for the grants that are available. This investigator driven research, while valuable, has resulted in some important gaps in the research of local issues that are unique, over represented or more severe in the Australian context. That is to say that research driven by academic, scientific or marketing interests might not be headed in the directions consumers need."
The Consumer's Health Forum, as the national peak non-government organisation representing consumers on health care issues, was asked to consult with consumer organisations and health consumers. They were to prepare a paper for discussion at one of three "focus group" meetings (the Health Issues Centre and Australian Consumers' Association represented consumers at the other two). In September 1999 the Consumer Health Forum sent out a questionnaire to organisations representing people with ME/CFS.
The ACT ME/CFS Society Inc completed one of these questionnaires and sent it back with this covering letter:
Matthew Blackmore
Executive Director
Consumer's Health Forum of Australia
PO Box 52 Lyons ACT 2606
Dear Mr Blackmore
Thank you for your letter of 23 September 1999 enclosing the Research Priorities Questionnaire. The ACT ME/CFS Society Inc. is pleased to have the opportunity to provide input on behalf of its members to the NH&MRC's Strategic Research Development Committee's consultation.
We feel that research into the physical causes of chronic fatigue syndrome, myalgic encephalitis, fibromyalgia, multiple chemical sensitivities and related health problems and into possible treatments has been underfunded by Government in the past. We believe that there is valuable research already being done in Australia that desperately needs funding, and that money directed towards this research would obtain real outcomes in a clearer more helpful diagnosis for sufferers of ME/CFS and better management of their illness.
However it is with some misgivings that we once again attempt to put our case, when as recently as February of this year, Dr Jack Best, Chairman of the Strategic Research Development Committee, stated that it was inappropriate to fund research being done in Australia at this time because "it is unclear how Australian researchers define "CFS" and how they select CFS patient cohorts for their studies". He suggested that before any funding would become available, the Australian researchers would need to develop a consensus definition "with clear criteria for selecting and subgrouping subjects for ME/CFS research studies" (letter dated 17 Feb 99, to Jim Oakley of the Victorian ME/CFS Society).
We believe that the argument outlined above is missing the point. We agree that the definition of ME/CFS is problematic, and research results have often been contradictory and inconclusive for this very reason. On the other hand, the research being done in Newcastle and Adelaide seems to us to be very relevant in attempting to defining the problem by matching symptoms with pathology, identifying subgroups with probably different causes for their symptoms, and developing diagnostic tools. This research has also had clear implications for therapies which are already being tried by practitioners, but lack of funding for proper studies means that evidence about whether these therapies are successful or not will remain anecdotal.
Consumers have put their case over and over again and are becoming very cynical that the Government really wants to hear what we are saying. When the Draft Guidelines were published last year much was made of the fact that there had been a consumer consultation beforehand and that comments were welcome. Yet the results of the consultation did not receive proper recognition, the consumer representative on the Working Group found himself battling against the odds to try and influence the outcome; while the many submissions on the Guidelines themselves - some very detailed and to the point - written with great effort by consumers and persons with real experience of the problems of the illness, were ignored.
We feel there may be vested interests at work. We note that there has been a continual funding stream for psychiatric research and that the people involved in that research were influential in the writing of the Draft Guidelines. The lack of recognition in the Guidelines for work on physical causes of ME/CFS was widely noted.
In the Draft Guidelines, ME/CFS, fibromyalgia and multiple chemical sensitivities were labeled psychological or psychiatric in origin, and the result of somatisation. Howver, since the Guidelines came out, there has been further evidence from both Australian and overseas researchers for physical causes of ME/CFS, with (for example) some patients being diagnosed with chronic mycoplasma and rickettsia infections, and even some remarkable improvements in health as a result of appropriate treatment.
Now is the time to fund research into the physical causes of ME/CFS. There is a clear cost advantage to Government in backing real medical research, and identifying physical markers and developing reliable diagnostic tests and effective treatments.
Therefore, we would like once again to state clearly that our members are not interested in any research into psychiatric aspects of ME/CFS and related conditions. We do not wish to see ME/CFS becoming a psychiatric diagnosis. While psychological interventions should remain an aspect of patient support, as for anyone with a serious or chronic illness, we do not wish to see funds being directed to research into cognitive behavioural therapy, graded exercise, and other inappropriate treatments that take no account of the reality of our illnesses.
Yours sincerely
Frances Sandbach
for the Committee ACT ME/CFS Society Inc.
August 2000
[ Top of this page ] [ Australian and NZ Information contents page ]
BACK HOME to the Canberra Fibromyalgia and Chronic Fatigue
Syndrome Page
http://www.masmith.inspired.net.au/
Webmaster: Moira A Smith last revised 8 Jan, 2001