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For years, the government's National Health and Medical Research Council has been funding a particular group of researchers who increasingly favour labelling people with ME/CFS as psychiatrically ill. In recent consultations, sufferers made it very clear this is not what they want. However, now that the 2001 grants have been made public, it seems nothing has changed.
Grants announced
Grant details
The Sydney Researchers
Research priorities
References
Background and further information
US Govt to fund Sydney research (update, Sept 2001)
A November 2000 press release from Health Minister Wooldridge about National Health and Medical Research Council (NH&MRC) funding announced:
Dr Ian Hickie of the University of New South Wales has been granted $100,000 for the first year of a five-year study of chronic fatigue syndrome (CFS), its links with two viral illnesses, Glandular fever and Ross River Virus and with a non-viral illness, Q Fever. . . . Dr Hickie's study will take place in Western NSW where infections such as Glandular Fever, Ross River Virus and Q Fever are common and have been associated with prolonged states of fatigue. The study is the central component of a larger set of studies which will investigate psychiatric, immunological and infective causes of CFS. [1]
Hickie is Professor of Community Psychiatry at the University of New South Wales and now heads up the government's new National Depression Initiative "Beyond Blue". Publicity for the initiative mentioned his "research expertise in ... physical health consequences of depression, somatic presentations of mood disorders and chronic fatigue states." [2]
While the press release singled out Dr Hickie, details of the grant on the NH&MRC website show Associate Professor Andrew Lloyd and Prof Denis Wakefield as co-recipients of the grant. Lloyd has also received a separate but obviously related grant to study Q fever. Together, the new grants amount to nearly a quarter of a million dollars over the next five years.
Here are the grant details as shown on pages 8 and 84 of the NH&MRC document "Project Grants results for funding in 2001"
page 8:
Standard Projects
University of New South Wales
CI Name/s: A/Pr Andrew R Lloyd, E/Pr Barrie P Marmion, Dr Ray J
Harris
Application ID 157092
Title: Microbiological and immunological determinants of prolonged
illness following Q fever.
($) Funding 2001 120,000
Future Support 2 year(s)
page 84:
Epidemiology Grants
New South Wales
University of New South Wales
CI Name/s: Prof Ian B Hickie, A/Pr Andrew R Lloyd, Ms Tracey A Davenport,
Prof Denis Wakefield
Application ID 157052
Title: A prospective study of the psychiatric & medical
characteristics of post-infective fatigue & chronic fatigue syndrome.
($) Funding 2001 100,000
Future Support 4 year(s)
Contents
Hickie, Lloyd and Wakefield have been publishing together on CFS for some time. They belong to the group, associated with the Prince Henry Hospital and University of New South Wales, sometimes referred to as "the Sydney researchers". Their early work in the late eighties on immunological abnormalities gave great hope to Australian ME/CFS sufferers. In particular their work at that stage showed that depression was a result of the illness and not a cause of it. In a 1990 paper they concluded:
... we have demonstrated that while depression and anxiety are common symptoms in patients suffering from CFS, there is no evidence from our well defined sample to support the hypothesis that CFS is a somatic presentation of an underlying psychological disorder. Instead, our study supports the hypothesis that the current psychological symptoms of patients with CFS are a consequence of the disorder, rather than evidence of antecedent vulnerability. [3]
Around 1994-95, however, they changed their tune. A 1995 paper dismissed immunological findings in CFS as of little significance and stated their new position:
Poor long term outcome appears to be predicted by psychological factors (past or current psychiatric disorder, a rigid belief in an 'infective' aetiology) and behavioural factors (decreased activity and social isolation) rather than immunological or infective factors. [4]
They continue to subscribe to the view that the physical symptoms of ME/CFS are due to somatization - psychological problems manifesting in physical form - and deconditioning. They have joined in an international effort by some psychiatrists and others to put physical aspects of ME/CFS into the "too hard basket" and focus on patients' attitudes, beliefs and "coping styles" instead.
Hickie, Lloyd and Wakefield were influential members of the Working Group that produced the 1997/2001 Draft CFS Clinical Practice Guidelines [5] that so dismayed many ME/CFS sufferers and advocates. These guidelines largely ignored international and Australian scientific evidence of physical abnormalities in ME/CFS. They repeated the idea that CFS is caused and/or perpetuated by believing one is ill, and recommended graded exercise programs and cognitive behavioural therapy as the mainstay of treatment. (Nevertheless, the guidelines also stated that chronic fatigue states had been found to follow Epstein-Barr infections, and cited research suggesting CFS might also be triggered by Ross River virus and Q Fever.)
In 1997, Hickie published an editorial in the journal Psychological Medicine [6] arguing that the diagnosis of "neurasthenia" should be reintroduced as a psychiatric diagnosis for fatigue, and appear in a future editions of the DSM - the psychiatrists' handbook. If that were to come about, anyone whose ME/CFS could not be clearly linked to a physical cause, such as a specific chronic infection, would by definition be suffering from a psychiatric disorder.
The very predictability of yet more funding for the Hickie, Lloyd and Wakefield team is especially disappointing as this round of grants was allocated under a new system that had promised change. In the past, funding by the NH&MRC has been submission-based. In 1999, recognising that "research driven by academic, scientific or marketing interests might not be headed in the directions consumers need" [7] , the NH&MRC set up a Strategic Research Development Committee to identify priority areas for funding. The Consumers' Health Forum (CHF) was one of three organisations asked to consult with the community and report back.
The Consumers' Health Forum sent out a questionnaire to support groups and societies. Organisations and individual CFS patients responded arguing the case for physical, not psychiatric research, pointing out that research teams such as those in Adelaide and Newcastle were doing promising work that deserved funding.
The ACT ME/CFS Society said in its covering letter:
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.
At first these efforts seemed to have borne fruit. The Consumers' Health Forum, at least, represented our views strongly. They singled out CFS in their report as a special "case for concern", noting that they had had a "significant number of responses" from sufferers and their representatives. The authors spelt our names wrong ["chronic fatigue syndrome, myeloencephilitis and neuralgia"] but got our aims right:
These people have been trying to raise awareness of their plight and their research needs with an illness that is hard to define and with no effective treatment or management strategies, for a number of years. Many responses identified that the main research need was for an understanding of the causes and processes of the illness, developing accepted assessment criteria, such as a mapping of the physical dimensions of the condition(s) and effects, or diagnostic tools, so that treatments could be developed. Some of the problems of people with CFS were common to other conditions without a clear diagnosis, such as not having their health needs recognised, or misdiagnosis and inappropriate treatment, including symptoms being attributed to mental illness. [8]
In the event, not only have Hickie and his colleagues received another five years' funding, but I understand that applications from the Newcastle and Adelaide researchers were unsuccessful.
Does the newly funded Sydney study fit in with whatever research priorities were identified by the NH&MRC's Strategic Research Development Committee? Presumably it must. However the Sydney researchers have apparently been planning their project for some time. The grant documentation states the funding is for research into "the psychiatric & medical characteristics of post-infective fatigue & chronic fatigue syndrome" and the press release quoted at the beginning of this article mentions glandular fever (Epstein Barr virus) Ross River Virus and Q Fever. As long ago as 1996, Andrew Lloyd told a meeting of the Victorian ME/CFS Society that he and his team were planning to study people with glandular fever, Ross River Virus or Q fever to find out what immunological and psychological differences there are between those who recover and those who develop chronic fatigue [9]. (He mentioned this prospective study again on an ABC Radio program on CFS in May 2000 [10].)
He said it would be an ambitious study, but one that could answer a lot of questions about CFS. We can only hope this will prove to be true.
Moira Smith
January 2001, with updates
September 2001 - The Centers for Disease Control in the USA have also announced funding for the Sydney post-viral fatigue research:
In August 2001, CDC funded a cooperative agreement (awarded competitively) to the University of New South Wales, Australia, to conduct a cohort study of post-infectious fatigue after acute disease caused by Q-fever (a rickettsia), Ross River virus (an RNA virus), and Epstein Barr virus (a DNA virus). Incident cases occurring in the Macquarie Health Service district will be followed prospectively for 3 years. A pilot study has shown that approximately 30% of patients develop persistent fatigue through 3 months, which is accompanied by symptoms of CFS. Approximately 10% of patients continue with CFS beyond 6 months. The overall objective is to define the disease processes leading to the development of post-infectious fatigue. Specific aims are to test the hypotheses that: 1) chronic cytokine release in response to persistent microbial antigens mediates the symptoms of post-infective fatigue and CFS; 2) post-infective fatigue and subsequent CFS is initiated by abnormal persistence of the causative microorganism; 3) psychological factors perpetuate physical symptoms after infection; and 4) genetic factors predispose to post-infective fatigue and CFS. [11]
[1] "NEW SOUTH WALES GETS $13M FOR HEALTH AND MEDICAL RESEARCH" Media release by Federal Health Minister, Dr Michael Wooldridge, dated 21 Nov 2000 http://www.health.gov.au:80/mediarel/yr2000/mw/mw20114.htm
[2] National Depression Initiative official fact sheet #4 http://www.health.gov.au/depression/infosheet.htm
[3] "The Psychiatric Status of Patients with the Chronic Fatigue Syndrome" by Ian Hickie, Andrew Lloyd, Denis Wakefield and Gordon Parker, published in the British Journal of Psychiatry. Abstract
[4] Hickie IB, Lloyd AR, Wakefield D. "Chronic fatigue syndrome: current perspectives on evaluation and management". The Medical Journal of Australia 1995; 163; 314-318. Abstract
[5] Draft Clinical Practice Guidelines on the evaluation of prolonged fatigue and diagnosis and management of CFS, developed by a Working Group convened by the Royal Australasian College of Physicians. Version 1 (December 1997) is at http://www.mja.com.au/public/guides/cfs/cfs1.html on The Medical Journal of Australia website; version 2 was released June 2001.
[6] Hickie I, Hadzi-Pavlovic D, Ricci C. "Reviving the diagnosis of neurasthenia" Editorial: Psychological Medicine Volume 27 Issue 5 (1997) pp 989-994 Abstract
[7] "Please tell us YOUR health and medical research priorities", Consumers' Health Forum questionnaire publicity, 1999
[8] Summary Paper: Input into the Strategic Research Priorities Discussion Groups " by Helen Hopkins and Matthew Blackmore, Consumers’ Health Forum, October 1999
[9] An International Perspective on CFS Research - talk given to the ME/CFS Society of Victoria's Annual General Meeting Nov 23 1996 by Associate Professor Andrew Lloyd. Originally reported in the Society's magazine Emerge Autumn 1997; now on their website
[10] ABC Radio National's "Life Matters" with Norman Swan -- Chronic Fatigue Syndrome, 12 May 2000.
[11] US Centers for Disease Control, Chronic Fatigue Syndrome Program,
Program Update, August 29, 2001
http://www.cdc.gov/ncidod/diseases/cfs/hot_topics/8.01_update.htm
Draft Clinical Practice Guidelines information and comments on this website
Ted Shaw's article "A critique of the Sydney researchers" describes the early work of Lloyd, Hickie and Wakefield, and contains links to more information.
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last revised 21 Feb 2004