BACK HOME to Canberra FM/CFS page
by T R. McGlynn
1. It is essential that the eventual CFS Guidelines be as accurate and objective as possible prior to their planned publication in the Medical Journal of Australia and, presumably, their adoption by Australian medical practitioners. For this reason no arbitrary date should be set as a deadline for their publication.
2. Since parts of the Draft Guidelines are likely to mislead most GPs who read them, they are unacceptable in their present form as a reference document for Australian GPs seeking information on CFS and how to treat patients. This is so because several opinions put forward in the document misinform GPs and because major facts about CFS are omitted from the Draft, rendering the document potentially harmful for CFS patients. Accordingly, all such errors require deletion or revision, after which the second Draft should be widely circulated for comment and review - and with far longer and clearer public notice to patients and ME/CFS Support Groups than occurred in 1997.
3. There is much easily demonstrable bias in the scientific references selected (and not selected) for the Draft's literature review and in the way in which some of those articles are selectively cited to support that bias. Such bias is unacceptable in any document purporting to be an objective review for medical practitioners, especially that majority of GPs who either disbelieve in CFS or are still poorly acquainted with the expanding CFS literature, since they may reasonably expected to be able to rely on the eventual RACP 'CF & CFS Guidelines' as their prime or even sole source of information on CFS.
4. Indeed, though the authors of the Draft may be unaware of it, the selective quotation from some areas of the literature, the exclusion and/or unjustified rejection of much other literature and the frequent resort to ex-cathedra assertion present a pattern that, however inadvertently, makes these Guidelines read as if they had been proposed and devised to serve the economic interests of insurers, employers, psychiatrists and treasuries rather than to assist doctors, CFS patients and carers.
5. There is therefore great concern among Australian CFS patients about the Draft. Should it not be substantially revised, I expect it to become the subject of public comment on a scale sufficient to achieve, whether before or after publication, the many corrections this and other patient submissions aim to justify to and request of the Working Group.
6. As one of hundreds of contributors to collecting and collating consumer input to the Working Group, I write to voice the concern of all involved at how little heed appears to have been taken of the work of Rev C T Ellis and the many other Australian and New Zealand PWCs who have provided evidence, opinions and other assistance to the Working Group.
7. I cannot claim to have been alert or energetic enough to fully analyse the Draft as I have been forced by time constraints to be brief in order to meet the swift deadline for patient responses. All other Australian PWCs have experienced the same (avoidable) stress. Why did the Working Group give so many sick people so little time in which to respond?
1. The "Clinical Overview" is the Draft's "Executive Summary". When finalised, it will be the section most often consulted and cited and for some GPs may be all of the document they ever read attentively. It is therefore essential that it should be comprehensive, accurate and objective. Yet despite extensive sections that are unobjectionable, the clinical overview as a whole is currently none of these things.
2. This is so because the Draft omits many materials familiar even to casual students of CFS literature, scientific or popular. For instance, although Fukuda is often cited and the allied disorders fibromyalgia (FM) and irritable bowel syndrome are referred to in the Draft, Fukuda's references to "multiple chemical sensitivity disorder" are not cited. Likewise, Dr Dedra Buchwald (Arch. Int. Med., 1994) is cited in the Draft's Bibliography, yet her analysis of FM, CFS and MCS as overlapping disorders is not cited in the Draft in the MCS context. Even UK psychiatrist Simon Wessely (Epid. Rev. 1995) refers (p.147) to other syndromes e.g. "so-called allergy or chemical sensitivity syndromes", stating that it is "probable there is substantial overlap between these" and, significantly, "diagnosis for such patients may be an arbitrary process influenced by such factors as the patient's presenting complaint and local referral practices". Yet these observations - indeeed all references to MCS per se - are absent from the present Draft.
3. There are, admittedly, references in the Draft (p.2) to "environmental toxins", but they are wholly dismissive. GPs do not need, apparently, to learn that there is a large and expanding literature on chemical injury, sensitivity, intolerance and neurotoxicity which also refers to CFS e.g. by Iris Bell, Claudia Miller and Grace Ziem - not one of whom is cited in the Bibliography. Grace Ziem's article 'Profile of Patients with Chemical Injury and Sensitivity' (Env. Health Perspectives 105, Suppl. 2, 1997, pp.417-436) refers to "substantial overlap between chemical sensitivity, fibromyalgia and chronic fatigue syndrome (which) may even be the same disorder". The Working Group's failure to consider this aspect under either 'Diagnosis', 'Clinical History', 'Investigation or 'Specialist Referral' is therefore negligent and misleading. As Sherlock Holmes (reputedly) said: -
"The mystery in this case, my dear Watson,
is the dog that did NOT bark in the night".
4. What is the source for the Model in Box 2? On what is it based? Can it be substantiated? I do not think it can be. If it cannot, it should be deleted.
5. There is still widespread ignorance and prejudice in the medical community about CFS and the people who suffer from it e.g. Dr Frank Duffy, Professor of Neurology at Harvard Medical School, stated in a recent ABC Health Report that "I had really been among the individuals who thought that Chronic Fatigue Syndrome was probably a psychiatric disorder allied to malingering or to conversion disorder." I therefore suggest it would be helpful for GPs if permission could be sought to reprinting as appendices to the Guidelines some first-person accounts by GPs with CFS e.g Thomas English (JAMA 1991) quoted (p.9) in the Guidelines but not in the Bibliography, and Claire Fleming (BMJ 308 (6931):797). It would help to add the review by New Zealander David Higgins 'Is CFS a stress-related illness?' (NZ Fam. Physician, Spring 1992, pp.172-174) for its broad coverage of multiple stressors potentially involved in CFS. I also suggest that Australian GPs should be referred to 'Living with ME' by Charles Shepherd, a UK doctor and CFS sufferer (Cedar Books, 2nd ed. 1992). Notwithstanding Dr. Shepherd's conviction that CFS-etiology invariably involves a viral attack, he provides a better introduction to CFS for GPs than does this document.
6. The Clinical Overview is defective, misleadingly proposing only simplistic, uniform, 'textbook solutions' and goals for a condition which is highly complex and individual and which even the authors of the Draft repeatedly claim is heterogeneous. As Thomas English states: "This is no illness for cookbook doctors". Moreover, the Draft's generalisations about "vicious circles of inactivity and disability" (derived from Simon Wessely?) and the alleged general value of 'graded exercise' are disparaging, inappropriate &/or potentially harmful. Such statements as "exercise tolerance improves" and "feasible increases in activity occur within a realistic time-frame e.g. several months" (when the real natural history of CFS suggests that modest improvements may occur, but only over years and with no guarantees) are presented as facts! These are mere assertions based on contentious sources that wholly fail to correspond with my own experience and those of most with CFS known to me. That "initial avoidance of physical activity may lead on to longer-term avoidance of all activity" is also, bizarrely, proffered as fact. Yet many PWCs who have tried to maintain activity by "pushing through", working long past the point at when they should have given up, have found as a result that they became vastly more incapacitated and even bedridden. I developed full-blown CFS in the first place because of my error in persisting in precisely the manner advocated in the present Draft. Reference is also made in the Draft to "discouraging excessive rest". How is the average GP to know what is "excessive" ? 'Excessive' for whom? When? In whose opinion? On which day of which week? Every genuine CFS patient knows that this is sheer nonsense.
7. Furthermore, despite much that is objective or unobjectionable in the 'Overview', any value in it is wholly undermined by the often repeated recommendation that an essentially psychotherapeutic response (CBT) should be the first or only one for the GP to consider. There is far too little evidence to support this proposition because the papers cited here as supportive of CBT are of no greater value than those relating to most other therapeutic models cited elsewhere in the Draft but dismissed on precisely the same grounds - that the evidence for them is either contradictory or inconclusive.
8. The Draft conveys the impression that it will enable all Australian GPs, of whom many currently know very little that is true about CFS, to take full charge of CFS 'patient- management'. Yet nowhere, its errors and omissions aside, does the Draft refer to the fluctuating severity of CFS symptoms, which may vary wildly day to day, yet which few GPs will ever grasp unless and until they get ME/CFS themselves. A sad consequence of this GP ignorance, which the Draft does nothing to dispel, is that most patients have for years had no choice but to reject GP after GP as ignorant, unsympathetic and incapable of listening rather than coming to a 'snap judgment' after a 10 minute interview. Patients have for this reason had to organise their own management until now, albeit with variable success. All patients, however, particularly new ones, will be seriously disadvantaged if they are sooner or later faced by an Australia-wide phalanx of still-ignorant GPs freshly convinced by this erroneous and tendentious document, which encourages them to 'manage' CFS patients by the dubious methods of CBT and Graded Exercise, neither of which is supportable by reference to the Draft's own (p.26) 'Quality of Evidence' ratings. The Draft, in other words, encourages an interventionist vigour more fraught with potentially harmful consequences for patients than most other current therapeutic approaches to CFS that are omitted from or are summarily rejected by this document.
9. Just as there is no mention of chemical sensitivity and its effects, there is also no reference in the text to the frequency with which sufferers experience new allergies and food-reactions. Instead, in the Draft's FAQs on page 4, diet modification is dismissed. Yet many PWCs have gained considerable relief once specific allergies, including food allergies, have been identified. Yet this has, for instance, been supported by some of the work of Dr Robert Loblay, one of this RACP CFS Working Group's own co-chairman!
10. The FAQ item on continuing work (p.4) is as likely to be harmful as the prescription for exercise (see 6 above). Too many patients, unfortunately, try to continue working too long. My own experience of 'keeping going' despite worsening symptoms essentially caused my eventual collapse and resulting long-term incapacity, in other words my CFS. There are also persistent suggestions in the Draft that CFS is allied to depression and is therefore appropriate for CBT or antidepressant treatment, yet the fact is that whereas depressed patients are generally unmotivated, all 'primary CFS' patients know that they are far more limited in what they can do by physical than by any motivational barriers.
11. The response to the FAQ item regarding recovery is equally misleading (see also my comments below under '3: Natural History'). Every PWC I know would love to experience the kind of recovery that the FAQ alleges "typically occurs gradually over weeks to months". We have never seen such a recovery in the many persons we know to genuinely have CFS.
12. The FAQ therefore requires very comprehensive alteration and improvement.
This section debates definitions of CFS and its prevalence. A discussion of 'A Spectrum of Fatigue States' tells us that CFS is 'a subjective state', implausibly proposes a 'fatigue continuum' and equally implausibly claims that it is unlikely that non-specific viral illnesses can trigger CFS. Confusion as to CFS prevalence is also aired rather than clarified and is muddled further by the unhelpful concept of a 'fatigue continuum'. In Box 1.1 'Prolonged fatigue' is defined as lasting "at least a month". Yet Hickie I. (MJA 1996) defines 'prolonged fatigue' as lasting "for more than 2 weeks". Hence, presumably, the high cited prevalence rate for Australia. But this inconsistency is not raised in the text when the paper is cited. See the paragraph "Who is at risk of CFS?" on page 7 in the context of CFS. This may mislead the average GP, who may not read Dr Hickie's paper with care, and thus amounts, however inadvertently, to muddying the waters.
1. Whilst acknowledging that Fukuda's definition of CFS is currently regarded as the standard for research purposes, I believe it would be valuable for Guidelines intended for clinical rather than research purposes to include all of the symptoms commonly - as well as less commonly - experienced by CFS sufferers. These are listed, plus varying estimates of prevalence, in many research papers and popular texts - but not here. Inexplicably, they are not mentioned elswhere in the Draft, either. This list of CFS symptoms should incorporate Fukuda's but to them should be added e.g. visual problems (scotopic vision, accommodation and focusing difficulties), auditory problems, speech difficulties, presyncope-balance-giddiness problems, emotional lability, alcohol intolerance, clumsiness and many others. What purpose is served by casually(?) excluding these and many other commonly experienced symptoms from what should be an eventual "CFS Bible for busy GPs"? Listing all CFS symptoms in the Draft would significantly assist all GPs in diagnosis.
2. The failure even to refer to the Newcastle research into biochemical abnormalities in CFS, which may eventually result in a test for CFS and/or elucidate possible organic causes, suggests yet another bias on the part of the writers of the Draft. The Newcastle - and the Adelaide - work is worthy of mention in any Australian document on CFS, if only to inform GPs that significant laboratory-based CFS research is taking place here.
3. Again, we see in this section demonstrable bias in the selection of references and in the way in which they are used e.g. on page 12 the failure to distinguish between prior and concurrent depression is highly misleading. Taerk, Kruesi and Hickie are all cited in the context of CFS and depression. Yet Hickie (1990) is actually strongly critical of Taerk's and Kruesi's conclusions, a fact that is not made clear in the Draft. Why not?
4. As stated a propos the 'Clinical Overview', the failure to include Multiple Chemical Sensitivity and diet factors in the section on overlapping disorders is an extraordinary omission. They should be included in the text and in the diagram and list in Box 2.5.
5. In this same section, why should "inexplicable symptoms" (p.13) be uncritically assumed to be "due to underlying psychological processes". As Claudia Miller (Toxicology 1996, 111 :69-86) suggests "most would agree in principle that organic bases for illnesses should be ruled out before psychological explanations are invoked". Perhaps, in this same context, on page 11 in the section 'History', the writers could provide a definition of their very emotive but imprecise reference to "unusual physical explanations of illness". What are these explanations? Why are they deemed 'unusual'? By whom? And what about the many far more plausible physical etiologies that patients - and doctors - have suggested? And what about the expanding physiological findings of laboratory research into CFS worldwide?
6. What is the justification for the statement regarding the likelihood of spontaneous resolution of 'short duration CFS' (p.14)? Specifically, what enables the GP to determine in the 11th month, say, that 'Patient X' is a '12-month', '50-month or 500-month' patient? The statement that the "great majority of people with CFS improve gradually or eventually recover" is utterly misleading. By combining two possible outcomes in a single sentence, the impression is given that most CFS patients eventually recover, which is untrue. The statement fails, miserably, to convey the many years required for a modest percentage of CFS patients to achieve 'gradual improvement', fails to convey how rarely full recovery occurs, fails to mention the frequency of relapse, fails to mention the large proportion of patients who register little or no improvement, fails to cite the modest proportion who continuously deteriorate and fails to mention the several recorded instances of death from the sequelae of CFS, especially in young PWCs, uncomplicated by another primary condition.
7. One cannot help suspecting that there may be members of the Working Group who have little direct experience of CFS patients - or even of perusing the literature - and that those who have researched or treated CFS patients have seen remarkably few severe cases.
1. CFS is not a notifiable illness, is frequently misdiagnosed and is still given little credence by many Australian doctors. Therefore, any general statements about rates of spontaneous recovery or any other outcomes in CFS must be guarded since they can only be based upon flawed and fragmentary statistical studies. The Draft's own references to heterogeneity in CFS should, in this same context, further caution all parties concerned.
2. Since there have been so few studies so far, the omission of Charles Bombardier's survey entitled 'Outcome and Prognosis of Patients with Chronic Fatigue vs. Chronic Fatigue Syndrome' (Arch Intern Med 1995, 111:2105-2110) is an odd one in a purported "exhaustive review and evaluation of the scientific literature" (p.26) given that Dr Bombardier's survey of 445 patients is larger than that involved in any other study cited. His study should be included and its findings given appropriate emphasis.
3. The survey by Hinds (1993) is listed in Box 3.2 but there is no discussion of Hinds' paper in the text. The text, for instance, fails to convey that 40% of Hinds' subjects were still ill after 5 years and that the 19% she reports as recovering took up to 6 years to do so. Moreover, of the latter, 32%, strangely, reported that "full recovery" meant that several years later they were still "unable to resume previous levels of activity"!
4. The most intriguing item in the Draft, on pp 15-16, would not be out of place in a witchcraft trial. It is the traditional citation of the prisoner's (read "patient's) beliefs as an integral element of the indictment (read "diagnosis"). The heresy attacked here is the evidently widespread and apparently erroneous conviction that CFS may have a physical cause or causes, such as a virus, exposure to organic solvents, iatrogeny, work-related stress, trauma, Sick Building or GWS. This belief is reported, probably accurately, to be correlated with 'poorer outcomes'. Yet the authors of the Draft appear to have given no thought to the possibility that these annoying, and allegedly delusional patient beliefs may be excellent surrogate measures of the genuineness or severity of CFS symptoms. Nor is any credence extended, it seems, to the possibility that 'better outcomes' (e.g. recovery in 1 or 2 years) may occur largely in cases of mild primary depression (fatigue in such cases being among the minor sequelae) erroneously but conveniently diagnosed as "CFS" and then, distortingly, incorporated into the growing flow of well funded, psychiatrically biased and misleading studies of prevalence and recovery.
5. This eccentric emphasis on 'erroneous patient beliefs' (which it would be rational to regard as reflecting patient experience - rather than delusions) raises, in view of the biased referencing elsewhere in the Draft, the disturbing question for readers of the extent to which beliefs of certain Working Group members based neither on experience nor on evidence may have played a major role in the creation of this Draft document.
6. One is reminded of another parallel - the not infrequent suggestion by doctors and certain others that CFS patients, despite the catastrophic income-losses most experience, are 'essentially pursuing secondary gains'. Is it not conceivable that certain undeclared beliefs of some of this document's authors may have an even firmer link to professional expectations of (real rather than imaginary) 'secondary gains' to be anticipated if the present Draft's 'management recommendations' were to receive official endorsement?
7. Moreover, in view of the alleged "illness-perpetuating beliefs" of many PWCs, how should a GP respond to a new patient who - presumably equally unjustifiably - attributes his or her CFS to a firm conviction that it had no physical origin but was instead caused by a prior, occult psychiatric condition?
8. Surely the principal authors of the Draft Guidelines cannot have had in mind here the happy outcome "Heads we win, tails you lose"?
1. This section is the most contentious in the Draft. It can be faulted in almost every paragraph. Many statements are presented as if factual without supporting references. Despite overwhelming evidence to the contrary, CFS is presented as a purely psychological disorder, or at least one in which the posited variable of a hypothetically incapacitating belief (!) is presented as the main factor governing severity and persistence of CFS.
2. It is claimed that all studies referred to in the Draft have been systematically evaluated and ranked according to NHMRC Guidelines. In the evaluations in the Draft on pp.23-24, many studies have been assessed as lacking consensus or as "conflicting". In Box 4.1, however, the few studies of Cognitive Behavioural Therapy and/or Graded Exercise in CFS cited have evidently produced equally conflicting results and therefore equally lack consensus support. Notwithstanding this, the authors of the Draft have, with no attempt at justification, chosen to assess them "on balance" as constituting the intended "Cornerstone of Management for people with CFS". They appear, accordingly, as two of only three recommended treatments identified in the grey box on page 17. Yet Wilson (Am. J. Med. 1994) in his review of treatments of CFS refers to CBT and, citing an earlier study by his group, states that for CFS patients "no additional effect was obtained from CBT". Oddly, this same study (by a Dr Andrew Lloyd, 1993) is not included in the list of references for 'CBT' in Box 4.1.
3. In short, this inconsistency in assessment suggests gross bias. It is in any case contradicted by the statement on p.17 that "any claim that a particular treatment can cure most people with CFS is likely to be spurious". Just so. The UK Royal Colleges Report on CFS, by a clearly 'pre-packed' membership, resulting in a predictable and deplorable psychiatric emphasis, has been universally condemned, including in a 'Lancet' editorial, yet its main recommendations closely parallel those of this document.
4. References in the Draft to CBT and 'Graded Exercise' should therefore be altered to convey to GPs the need to regard both of these proposed therapies as being no better proven than any of the 26 other CFS-treatments reviewed in the Draft. (See 5.2 below)
5. Sleep management (p.21): Four recommendations are made. Nothing in the Draft better illustrates the error of advocating standardised responses to this fluctuating condition - with its infinite gradation in severity. Of four recommendations on sleep, only No.2 (avoid stimulants) is applicable. No.1 (restrict sleep to 8/9 hours) is in many cases unachievable. No.3 (abolish daytime naps) is nonsense and No.4 (promote daytime physical activity) would require numerous 'activity-levels' to be extremely carefully defined.
6. In Box 4.4 on page 21 entitled "Breaking Vicious Circles - a Rationale for Therapy", the accompanying 'spiral diagram' misrepresents not only the CFS experience but also the possibilities of intervention. Rather than a spiral leading to depression and disability, suggesting attitudinal and motivational decline over a lengthy period, the reality of CFS for most patients is a swifter, uncomprehended (and definitely non-spiral!) physical collapse into fatigue and disability within weeks at most, followed by years of stumbling across an endless, ravine-split plateau well below the level of the rest of the world, yet often without signs of depression. The graphic presentation to GPs of a spiral trajectory for CFS leisurely enough to permit significant exacerbation via subsequent deconditioning or depression, or else effective improvement by any kind of intervention, is misleading except for genuine depressives for whom the Guidelines purportedly are not intended. This irrelevant, misleading diagram and all textual references to its supposed implications and opportunities for intervention should therefore be removed from the Guidelines.
7. The last paragraph of p.21 is disparaging and harmful to patients in that it criticises CFS Support Groups: "Groups may reinforce stereotypes of chronicity and disability (and) increase alienation from medical and government agencies and encourage treatments lacking scientific evaluation". Since Support Groups, books and internet links provide PWCs with a range of data (including valuable information on the reported attitudes towards CFS patients of certain eminent medical persons!) far superior to that available from the average baffled, sceptical or hostile GP, they are not only useful but will become even more vital if the eventual Guidelines still denigrate Support Groups in this way. This baseless, mischievous criticism should therefore be replaced in the eventual Guidelines by a measured statement approving the general value to all patients of ME/CFS Support Groups.
8. We note that a term for Support Groups used by one prominent author of the Draft Guidelines is 'Pity-Parties'...
1. This section is unfortunately almost entirely tabular in format while no text relating to it appears in the "Clinical Overview". Yet it tightly and very selectively condenses into three pages and five tables and diagrams almost all of the Draft's references to likely CFS etiologies - alleged psychological ones aside - that all Australian GPs should be aware of and consider when confronted by patients who claim or appear to have CFS.
2. We read on page 22 that the "effective treatments for people with CFS are likely to follow (not precede) delineation of the pathological processes underlying the disorder" - an uncontroversial assertion which, unfortunately, is flatly contradicted by the whole of page 20, where, under the heading "Is there a role for behavioural treatment approaches?" CBT and 'Graded Physical Activity' are extolled as the 'corner-stone' of CFS management! The rest of page 20 consists largely of Box 4.3, in which 26 non-behavioural approaches - for which the evidence is often as good as any for CBT - are all summarily dismissed as "Treatments for which scientific evidence is lacking".
3. The diagram 5.5 on p.25 is excellent. Sadly, it was not made a part of the Clinical Overview even though it helps to identify as 'Risk Factors' many, though not all, of the possible 'triggers' which so often precede CFS and which are not mentioned elsewhere in the text. However, inoculations, injections, anaesthesia, shock, transfusions, trauma and other physical stressors should also be added here plus, perhaps, others over time...
4. In Box 5.4 'Poisoning' gets a mention. The references cited relate to specific chemicals but there is no mention of Multiple Chemical Sensitivity. Strangely, although Buchwald and Garrity (1994) are cited in the context of silicone implants, the article cited also compares American patients with CFS, FM and MCS. Yet that comparison, the major theme of their paper, is here inexplicably passed over in silence.
5. As stated above re the 'Clinical Overview', there is no mention in the Draft of any of numerous scientific papers on the strong contribution (singly or in combination), of toxic chemical exposures to CFS, to which Buchwald, Bell, Miller and Ziem, inter alia, refer. The finding that 20-25% of 'Gulf War Syndrome' sufferers in US studies qualify for a CFS diagnosis are also worthy of note and should therefore have featured very prominently in this superficially impressive but, on closer examination, sadly defective document.
T R. McGlynn (Westwood, Launceston)
1 February 1998
<thormac@vision.net.au>
[ 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 30 May, 2001