By Sasha Nimmo
Australia’s government is seeking advice from an advisory committee on current research, gaps in research and whether the 2002 clinical guidelines for doctors should be revised. The last time the government began to look at chronic fatigue syndrome was 25 years ago. In 1993 the then Minister for Health, Graham Richardson, established a review to provide advice on diagnostic and management regimes for sufferers of CFS. Nine years later the 2002 guidelines were published; but never endorsed by patient organisations.
During the 1990’s Australia’s federal government spent almost a million dollars on research into chronic fatigue syndrome. It all went to psychiatrist Ian Hickie who worked at the University of New South Wales (UNSW).
1992 saw Hickie given $213,000 for the study ‘Is neurasthenia (chronic fatigue) prevalent in primary care?’. The aim of the study was to “determine the prevalence and sociodemographic and psychiatric correlates of prolonged fatigue syndrome among patients visiting general practitioners”.
In 1994 Hickie was granted $271,000 for the study ‘Do Chronic Fatigue and Depression Run Together in Families’, collecting data on “people with chronic fatigue and/or depression and their relatives”.
In 1996 the NHMRC provided almost half a million dollars for research into chronic fatigue syndrome. The funding was again given to the UNSW to analyse the ‘Pathogenesis of Melancholia’. The chief investigator was Ian Hickie (according to a fax from the Department of Health and Family Services 1996).
1993 The ‘Watson’ Chronic Fatigue Syndrome Review, instigated by the federal health minister, recommended a national consensus conference of key agencies, researchers, clinicians and representative consumers. This recommendation was not followed.
1994 The Royal Australasian College of Physicians (RACP) and the Royal Australian College of General Practice (RACGP) surveys of members revealed “signifigant areas of ignorance, misconceptions and prejudice”.
1995 The RACGP proposed the development of clinical practice guidelines for CFS.
1996 The Commonwealth Department of Health and Aged Care provided a grant of $130,000 (later extended to $200,000) to the RACP. The RACP committed to following procedures outlined in the National Health and Medical Research Council Guidelines for the Development and Implementation of Clinicial Practice Guidelines.
1998 Due date for the release of CFS Clinical Guidelines (a draft was released for comment and attracted widespread comment).
2002 The CFS Clinical Guidelines were published. The Guidelines were strenuously rejected by all state consumer societies and the ME Chronic Fatigue Syndrome Association of Australia. Many Australian and international researchers voiced concerned about the bias of the document.
From an address to the Federal Government Policy Committee of Health and Aging in 2002 by Christine Hunter AM on behalf of the Alison Hunter Memorial Foundation
Hickie went to become an author of the 2002 CFS guidelines, along with his UNSW colleague, Andrew Lloyd.
They worked together on ‘A prospective study of the psychiatric & medical characteristics of post-infective fatigue & chronic fatigue syndrome’, from 2001-2005 and the NHMRC funded the $500,000 study.
The Guidelines say “a multidisciplinary Working Group (including a Consumer Health Forum representative) was established under the auspices of the RACP to develop and disseminate evidence-based guidelines, following the procedures recommended by the NHMRC.
“The Working Group conducted an extensive review of the relevant scientific literature on prolonged fatigue, chronic fatigue and CFS, and the evidence was rated according to a modification of the schema recommended by the NHMRC.”
These guidelines state they are for health care professionals “involved in managing people with fatigue states”.
Two written complaints about the 2002 Australian criteria, here and here, say the 2002 Guidelines would result in misdiagnosis, inappropriate and inadequate medical care and the promotion of widespread misconceptions about the illness.
This history shows the importance of the current ME and CFS advisory committee, listening to patients and experts. This could dictate treatment for the next 25 years and has the potential to either continue to misdirect funding to psychological and exercise programs or to invest in biomedical research and find a treatment which would transform the lives of hundreds of thousands of lives in Australia.
The make-up of the current Australian committee underlines the need for the committee to run an open and transparent process. Unlike the US CFS advisory committee, where all voting scientific positions are reserved for biomedical research scientists with demonstrated expertise in biomedical research applicable to ME and CFS, the Australian committee only has one person with this expertise.
Thank you to Christine Hunter AM from the Alison Hunter Memorial Foundation for contributing information.
4 thoughts on “Mistakes of the past: ‘The Pathogenesis of Melancholia’ and other wasted money.”
Thank you for writing this and finally someone bringing this to the attention of people with MECFS and needing to be raised with the upcoming advisory committee. We have been hoodwinked by most past research especially in Australia and the current patient committee members need to shout loudly and really stand up for patients when, as you say there is already a bias on this so-called scientific committee. It has reached a point where we should not be privileged that finally, we have a say and a seat at the table and meekly need to try and work with these predominately ignorant people. The patients should be the main guides of this engagement. Where are the infectious disease docs, the experts on POTS and mitochondria and the gut etc? Where are reps from the medical establishment that understand the broad complexities of the illness with the need for individual systematic diagnosing and treatment for patients? People like functional medicine and GP specialists in this area. Those that understand we need to look more broadly beyond “normal” testing Those that can see that for some patients there may be overlap with tick and other vector-borne pathogens and also mould and CIRS. What about specialists in heavy metals and nutrient deficiencies and endocrinology and heart specialists who understand the issues with mecfs patients and these functions? The criteria for diagnosing at present is all too broad as people with sleep apnoea and gut dysbiosis get thrown into the CFS mix and once labelled never seem to come out from. Once labelled with CFS it is a nothing we can do mindset” and doctors become lazy to explore areas that could, if not cure but give a better quality of life to people especially those with simple fatiguing issues which are not fully explored but are wrongly labelled with CFS. They should not be just “managing this” they should be getting to the bottom of this to get at least most people well again. A recent report indicates there is plenty a doctor can do but is not guided to do so. That also should be raised by patient representatives. Provide a huge list of out of the normal range of analysis that one should exhaustively go through. A decent back to birth patient history would also be a good starting point. This is at least a starting point NOW rather than waiting for yet more research for those elusive biomarkers. People are sick and we are sick of being sick and not completely and fully investigated as what real physical issues are underlying each individual labelled with CFS, a horrible name for a very sick patient group. Thank you again for the post and lets spread what you wrote far and wide.
Dear Peter,
Thank you. I agree, those people should be on the committee advising government.
We can learn from history to try and avoid the same mistakes, but will we?
I’m going to reference that disgraceful 1996 study in my next letter to the NHMRC .