BACK HOME to Canberra FM/CFS page
by Martin Butler
Having read the report and the consumer newsletter and understood the significance of the revised rules of evidence used by the Working Group that discount anecdotal and other consumer opinion as “subjective material”, it is apparent that input from consumers is considered inconsequential if not irrelevant. I hold the same concerns for submissions from consumers and their General Practitioners concerning comment on the draft report also. The request for “constructive” criticism is also a threat to respondents to toe the line on the religious pronouncements of the report or be ignored. However I submit that all criticism is constructive, especially when it points to major flaws.
Before I comment on the report itself I first must object to the very procedure that lead to the establishment of the working party. That procedure taints the credibility of any of this current process under the auspices of the RACP and the recommendations subsequently made by the Working Group. The Working Group came about due to a contract, the terms of reference of which have since been exposed, between the RACP and Medicare at a time when CFS groups were lead to believe that the government had committed to implement the CFS Review Committee’s recommended Consensus Conference with consumer involvement. Notably ACMA had held a consensus conference in Sydney in preparation for the expected all party consensus conference.
However the proposed consensus recommendation proposed by the CFS Review Committee have been hijacked by the vested interests of; a) Medicare (which wants to reduce spending on CFS which it sees as uncontrolled) and b) the elitist RACP (which as is apparent in this draft report is attempting to label CFS as a psychiatric illness and thereby ‘own’ the consultation and research revenue streams. Neither of these objectives are beneficial to CFS patients, their GPs (especially complementary practitioners) or the provision of effective treatment, either now or in the future.
This process is not producing consensus guidelines except amongst the very small and ‘stacked’ so-called “expert panel” of the Working Party itself.
Few people are aware of this con job and may consequently be duped by the apparent legitimacy of the process and the high profiles of its proponents. I therefore call for the findings of this report to be submitted together with the ACMA position and other interested parties to a true consensus working group to establish guidelines that all in the CFS community can own rather than these counterfeit recommendations, whatever their final form, being foisted upon us.
I further object to the timing of the release of this draft for submission, coming just before Christmas when most people are either going on holidays or have festive commitments etc. The report was supposed to have been released much earlier in the year when it could have received more time and attention. But judging by the tone and content of the Draft that would have given people too much opportunity to uncover the deceitfulness of its content and purpose. This is especially relevant when one considers that CFS patients due to their disabilities, often take much longer to comprehend and respond to such a process. A 12 week minimum period for response would have been much fairer to CFS sufferers. They have therefore been cruelly discriminated against whereas the working group itself ‘took its time’, perhaps even delaying the reports release intentionally to coincide with the holiday period.
The report is so biased and unscientific as to be labelled a fraudulent con job. It is an attempt to re-establish the British guidelines and attribute CFS to a psychiatric fatigue state and ignore the CDC openness to a physical aetiology and pathogenesis. Psychiatric attribution is almost all encompassing having eliminated competing physical views by manipulating the rules, by ridicule or outright bias in the use of data and in the recommendations. The fundamental error of focusing on CFS as a fatigue state to link CFS with psychiatric diagnosis is an insupportable construct. The recommended early management of reassurance and supportive care is nothing short of therapeutic nihilism. Unproved drug therapies and CBT are then recommended to treat the misdiagnosed condition. Further, if patients don’t recover under this psychiatric regime (and few with CFS do) they are blamed for the disease and labelled psychosomatics. Finally, those who have been refused a proper diagnoses of CFS over a long period actually “prove” that they have somataform disorder! This report is outrageous and a danger to CFS patients. Lloyd, Hickie et al are exposed as self serving and should be sacked.
The report title appears to be about two different conditions. The authors suggest “that CFS overlaps with other fatigue-related syndromes, such as fibromyalgia or IBS” but the “significance of these overlaps for pathophysiology and treatment is not clear.” They therefore “focused on published studies whose principal topic was CFS” pg26. However the title which includes “prolonged fatigue” (and the actual use of research data and the content of the report, where it serves the authors agenda) belies this statement concerning the focus on CFS.
Also, Chapter 1 starts with a diatribe on “The spectrum of fatigue states” culminating in the assertion that CFS is merely on a continuum of fatigue states and is not even a “disease”. In Chapter 2 the emphasis is once again on fatigue. The section heading and first two headings are respectively; “How should people with fatigue be evaluated”, “What is “fatigue”?” and “How should a doctor evaluate fatigue?”. Not a word about how to evaluate CFS, What is CFS or how to evaluate CFS. Chapter 3 continues this emphasis on fatigue in the title; “... natural history of prolonged fatigue ...” and first section heading; “What is the outcome of fatigue states?” This despite the finding that although “Spontaneous recovery in cases of prolonged fatigue is high” compared to “the long term outcome of CFS ... [is] ... chronic illness and limited patterns of recovery.” and “... complete recovery was uncommon”. An obvious distinction between two separate diseases.
The report is supposed to be about CFS but the authors appear to be totally confused by the overlapping symptom of fatigue. Further reading of the report exposes the need for this confusion which is similar to that of the discredited British report including CFS and fatigue as one, as a major diversion used to link the physical disease of CFS with the psychological illness of depression towards which the authors are biased. In fact it is asserted that “When adults present for medical assessment with fatigue states the most common alternative diagnosis to consider is major depression” (p. 9). This obviously is and will be a major cause of the misdiagnosis of patients with CFS. It is also somewhat terrifying to consider for a PwCFS because once this misdiagnosis is made “a separate diagnosis of CFS is not justified.” i.e. once misdiagnosed you are so for keeps!
The authors fail to recognise that CFS is a significant disease in its own right that has yet to have its aetiology and pathogenesis discovered. The authors need to leave their own agendas aside and understand that fatigue is but a symptom (not always the worst one) of the underlying disease process and address guidelines to the evaluation of that disease. I doubt that there is evidence, even by the rules of this report, to call CFS a fatigue state. The title should therefore not include the reference to prolonged fatigue. The whole report is based upon this misguided concept.
Despite assurances from the Minister of Health regarding the government’s confidence in the integrity of the members of the Working Group, the report’s biased and selective use of evidence and self interested recommendations prove that fears concerning their integrity and/or competence are well founded.
Dr. Loblay is on record as declining to say that CFS is a physical disease, implying he believes it is psychological. Considering that there is no consensus for this view, his bias is unwelcome by the CFS community. The Chairman has been unwilling also to be honest and open about the establishment of the Working Group by Medicare and the RACP. I can only conclude he is hiding something from the CFS community.
Professors Hickie, Wakefield and Lloyd have done some research, often together, the thrust of which is to ascribe psychological cause to CFS or treatment to CFS. This research features disproportionately heavily in the report and consists of 25 of approximately 300 (9%) of papers reviewed which is again quite disproportionate. Further the number of times they use their own work to justify their findings smacks of self interest and bias. Research by ‘friends’ of the authors also gets disproportionate weight.
Other significant opinions and research is ignored or glossed over at the expense of the preferred psychiatric interpretation. This I attribute to the biased so-called comprehensive review carried out by Lloyd, Hickie and the psychiatry school based assistant, Ricci. It is evident that these are the principal authors of the report and steered its main thrust.
The so-called Consumer representative was and is by his own admission, no such thing. He was merely a conduit for the consumer submissions, which to all intents and purposes have been ignored by the medical members of the Working Group, justified no doubt by their revised rules, rules which ignore Appendix C patient surveyed health outcomes.
Once again a true consensus conference where consumers have real relevance is called for. The consumer representative’s comment that it is “apparent to me that an ideological gulf existed between the medical/scientific approach to the writing-up of CFS issues and the actual stories and health consumer issues surrounding those issues.” is a nice way of saying he was ignored and thus consumer input has been also. What evidence is there that consumer input has been utilised?
Significant representation has been omitted in the Working Group. It was acknowledged in the CFS Review Committee report that there is “ an extensive resort to complementary and alternative medicine” by CFS sufferers, often because conventional medicine (as represented by this Working Group) fails to provide relief of their symptoms or understanding of the disease. The omission of representatives from these groups e.g. ACMA, is significant and must be remedied especially in the light of their approaches being patronisingly and unscientifically discounted as having “no evidence” and referred to as “unproven treatments” as if in comparison the ‘preferred’ psychiatric approach including drug therapies is somehow proven, which it is not. (FAQs p. 4). This unequal interpretation exposes the Working Groups bias once again.
The entire report is a presentation of psychiatric dogma rather than an information guide about CFS. “These guidelines are primarily aimed at assisting general practitioners” to realise their incompetence at diagnosing CFS and their utter dependence on psychiatrists to provide a diagnosis and treatment. Although, “In most cases, a general practitioner should be able to make a confident diagnosis of CFS” is proclaimed (Specialist referral p. 2) the remainder of the report goes on to explain that this is not possible. On page 9 we are told “A formal diagnosis of CFS cannot be made without proper psychological evaluation of the patient, strongly hinting that a specialist psychiatrist “may be useful for both diagnostic and treatment purposes”. The inference here being that CFS requires psychiatric treatment by a specialist as a matter of course. Again on pg. 2 “if ... the diagnosis remains in doubt, the opinion of a specialist physician should be sought.” On page 13 the GP is reminded of this very doubt and need for specialists due to “the lack of diagnostic certainty in people with CFS and the reliance on clinical history and examination”. Another GP’s opinion only “may” be sufficient. On the same page the GP is then warned to not try and act as an expert witness, this honour being reserved for the specialist. This all undermines the GP’s relevance and credibility.
The GP should also be aware that due to the evidence based rules, especially the “modified” ones used by this report, their clinical judgement is ranked very lowly and that of their patients doesn’t even matter so their opinion, no matter how expert, can be ignored. These recommendations are self interested claptrap and must be expunged.
There are some superbly qualified GPs treating CFS that have a much better grasp of the disease than many specialists. The fact that they are open enough to accept physical cause and continuing disease process and use alternatives to the drug and psychological remedies of this report appears to put them beyond the pale of the conservative authors.
The Background omits the role a consumer group played in the establishment of the CFSRC which was not established because of “perceived variations in clinical practice” but because we demanded guidelines for Medicare so we could get appropriate treatment without fear of our doctors being subject to the bogus overservicing charges.
The exposure draft is supposed to have been widely circulated to “... interested individual practitioners and individuals” among others. How many of the respondents to the CFS Review Committee received copies? I know several who did not. Surely they are interested parties, especially if this is supposed to be a continuation of that process. Why were they ignored?
With reference to the box in the preface it appears that patient “preference” does not mean patient opinion. I suggest therefore that the authors have “not [gone] to sea at all”.
As the whole report turns upon the guidelines please see Section 6 first.
Why do the authors find it necessary to have to explain the development of these guidelines? Is it to explain away fears that they have been tampered with so as to provide a basis upon which their thesis can prosper and competing views be ignored? Appendix C of the NHMRC guidelines has been ignored so that patient/consumer opinion would not interfere with the subjective consensus opinion of the expert panel which is free to become “evidence” without fear of contradiction. What makes these arbitrarily selected people the only experts that their opinion can rate as evidence? This in the face of the CFS Review Committees finding that there is no consensus among doctors about CFS. This is surely a manufactured consensus which is meaningless and without integrity, manufactured to comply with a predetermined agenda and unscientific preconception of CFS.
It is obvious then why the box entitled “Quality of evidence ratings” has no rating for consumer opinion. It doesn’t rate. This is an outrage, but typical of the patronizing view taken by doctors that blame the patient for a disease the doctors don’t comprehend and can’t cure.
I question the exhaustiveness of the review of CFS that has been undertaken. A selective review to support the author’s predefined thesis is evident throughout the report. The phrase “relevant scientific literature” is a subjective one and describes a need to prejudge literature before it was reviewed. If the literature was on CFS it should have been reviewed. If scientific papers were about an illness with overlapping symptoms they should have all been included or all been excluded. Picking fatigue and rejecting fibromyalgia and IBS is purely biased reviewing. It would be puzzling to try and understand why prolonged fatigue and chronic fatigue was included but fibromyalgia and irritable bowel syndrome were ignored unless the attempt to link CFS to psychiatric illness and distance it from physical illness was not so transparently obvious in the report.
The distortions in the revised rules promote the status quo and eliminate any promising novel yet effective treatments from consideration. Considering that there is such broad disagreement on CFS and many unreplicated studies, to do so is to ‘put one’s head in the sand’. Perhaps promising novel treatments would expose the authors agenda of labelling CFS as psychiatric illness because promising treatments are most often based upon a physical model of CFS.
Considering the fact that there are no treatments (to the knowledge of the authors) that provide consistent amelioration of symptoms, “data from single case series without control subjects” should provide exciting possible new frontiers that should be at the very least tabled as possible hypothesis rather than being ignored. The author’s enthusiasm to protect their “unproven” psychiatric hypothesis is evident once again.
The report notes the heterogeneity of CFS and the high likelihood of multiple contributing factors yet the rules are designed to eliminate any research with conflicting findings perhaps due to “confounding variables.” It makes it all very much easier to toss the lot under a broad fatigue heading which can then be used as evidence for psychiatric illness than to allow that these conflicting findings may indicate different states of the CNS, HPA, immune system etc. which when adequately understood point to a physical CFS. No, that would be a heresy to the dogma of the psychiatric high priests. Otherwise the CDC criteria could be recommended as a basis for comparison but that might limit samples to real CFS and eliminate ‘fatigue’ conditions that give such good results in psychological trials.
The rules focus on a research prerogative rather than patient treatment and outcomes. This is perhaps because the prime authors are researchers and their bias is so transparent in other areas so why not here also? It would appear they are more interested in providing reasons for research funding of their thesis than for effective treatment to patients.
Based on these rules the evidence is ‘no consensus of evidence’ therefore the Working Group’s biased ‘opinions’ prevail as evidence at the expense of empirical physical treatments by GPs that are proven by consumer health outcomes.
For comments on Clinical overview and the rest of the document please go to Part 2
[ Top ] [ Guidelines page ] [ Australian/NZ information] [ Library]
BACK HOME to Canberra Fibromyalgia and Chronic Fatigue Syndrome Page at http://www.masmith.inspired.net.au/
Moira A Smith - Canberra, Australia
last revised 8 March, 1998