HOME Canberra FM/CFS page > Australian/NZ information > Guidelines>
by T. R. McGlynn
SUMMARY (see also paragraphs 19-21 below)
Australian ME/CFS Societies should publicly and unequivocally state that this version (V2) of the RACP's so-called "CF & CFS Guidelines" is unacceptable for much the same reasons as applied to the 1997 version, including:
(a) demonstrable bias in respect of the kinds of evidence cited and
(b) the potential for serious harm to patients V2 could cause in the hands of the many doctors who presently know less about Myalgic Encephalopathy (including even its original, correct name) than a substantial percentage of Australian ME patients.
(Comments on Version 1)
1 No bibliography is provided, rendering V2 incomplete and constituting a very serious hindrance to analysis and criticism in the month (!) allowed. Since the Working Group has had 4 years in which to update the initial bibliography, this omission appears too convenient to be accidental, especially as half of July has already elapsed with still no sign of the missing bibliography. From the text alone, however, it is clear that 70% (by volume) of the published literature on ME seems to be uncharted territory for the principal authors of V2, while the 30% from which almost all their citations appear to be derived is a literature so eccentric - and so repetitive - as to amount to less than 10% of the useful data on ME so far brought to medical and public attention worldwide.
2 V2 is self-contradictory. Why is even V2's title not the same as that of V1? There are numerous conflicting assertions, at widely spaced intervals, about (e.g.) the nature, pathophysiological authenticity and chronicity &c of so called 'chronic fatigue syndrome'.
3 The impression gained from reading V2 is that the original 1997 version has been left essentially intact but that superficial, anodyne comments have been randomly added in an attempt to deflect those among its critics who may be less alert or informed. However, the essence of the obnoxious and potentially harmful 1997 original survives intact.
4 Since 1996 the Guidelines exercise has suffered from the confusing proposition that ME is essentially a 'fatigue condition' legitimately categorisable as one (or more?) 'fatigue states' in an alleged gradient or continuum characterised by 'fatigue severity' alone. This proposition, however, is shaky and misleading. The concept of a 'fatigue-continuum' into which ME somehow 'fits' is a construct that would have presented a severe challenge to the imagination of the present authors were it not for certain US-based amateur nosologists (with little combined experience of treating ME) having in 1988 added to 'ME' the wholly unnecessary, distracting and derogatory name of "CFS" (Jason L's recent study shows very contrasting medical responses to identical patient groups labelled as "ME" and "CFS").
5 V2 is biased. There are, still, shockingly few references to most of the acknowledged research-leaders on ME/CFS, apparently because almost all are engaged in unravelling various physiological (including environmental and chemical) causes, symptoms and other aspects of ME/CFS that are either unknown to or are dismissed by the authors of V2.
6 Leading authorities on ME/CFS either not (or not sufficiently) cited include:-
Rowe P.C., Bell D., Komaroff A.L., Lapp C., Moldofsky H., Dowsett E.G., Simpson L.O., Costa D.C., Suhadolnik R.J., Mena I., Demitrack M.A., Natelson B.M., Bombardier C.H., Snow. P, Woodward R.V., Goldstein J, Klimas N, Boda. W.L, DeLuca J., Lerner M., Dunstan H., Haier G., Barrows D.M., McGregor N., Baker E.L., de Meierleier K., Bianchedi M., Miller C. S., Ziem G., Bell I., Winder C., Little C., Walden R.J., Martin J., Richards R.S., Jason L., Burnet R., Pearn. J., Scroop. G., Chaudhuri A., Behan P.O & W.M H., Jadin C. L., Hyde B., Roberts T.K., Marcel B., Piirmohamed J., Butt H.L., Tirelli. U., Goudsmit. E., Chester A.C., Spurgin M., Schwartz R.B., Nixon P.G., Sandman C.A., Corrigan F.M. et al
7 Hence, much post-1995 ME literature is not cited while the few on the Working Group with some kind of claim to ME/CFS expertise seem to have used the exercise essentially as a vehicle for promoting their own narrow, nowadays much-embattled views. The work of theirs and others (e.g Wessely S., Sharpe M., Straus S. et al) to which they refer is biased towards psychiatric explanations and responses for which evidence is at best highly equivocal or else has been contradicted by subsequently published work (e.g. on CBT).
8 V2 is also biased in omitting other etiological and/or exacerbating factors in ME/CFS (e.g. solvents, pesticides, herbicides, over-prescription of pharmaceutical and/or other drugs, anaesthesia, other iatrogenic causes, trauma and stress factors) that either complement or are in conflict with the principal authors' most recently published views.
9 We find, for instance, such gems as "there are no abnormal physiological findings". Can this be because all the authors of this document are wholly unaware of the large and growing literature on ME-specific neurological, immunological, endocrinological, cardiac, haematological and other abnormalities in ME/CFS? Or is there an alternative explanation for the authors' apparently comprehensive ignorance of most or all recent work in these areas? Furthermore, MRI and SPECT scan peculiarities, aberrant urinary markers, ion channel abnormalities and the high incidence of orthostatic hypotension (OH) and of related circulatory and haematological problems are here all passed over in silence.
10 As orientation on these deficiencies I recommend A L. Komaroff's editorial in the Am.J.Med 2000: 108:169-171 entitled "The Biology of CFS", which ends: "(K de Merlier's) report is inconsistent with the hypothesis that CFS involves symptoms that are only imagined or amplified by underlying psychiatric distress - symptoms with no biological basis. It is time to put that hypothesis behind us in order to pursue biological clues, such as the observations reported in this issue of the American Journal of Medicine, in our quest to find answers for patients suffering from this syndrome."
11 GPs should next, in default of a better guide, refer to the proceedings of the 1998 & 1999 Manly Conferences on ME/CFS and their recent equivalents in Brussels (2000) and Seattle (2001). The title of the first of these, "The Clinical & Scientific Basis of CFS, From Myth Towards Management" (Manly, Sydney, 1998) neatly illuminates the research path ahead, which promises to lead medicine away from the mists of the dying mythology that is exemplified by too many aspects of the document under review.
12 Under "overlapping conditions" are no references to Multiple Chemical Sensitivity or to organophosphates, pesticides, herbicides, solvents or other chemicals as causes of ME/ CFS. Yet note that Fukuda K., Hickie I., Straus S. et al in 1994 (Ann. Int. Med vol 121, 953-9) cited "multiple chemical sensitivity disorder" - without apparent embarrassment!
13 We also find no reference to Gulf War Syndrome as a further overlapping entity, yet 20-25% of US and European GWS patients also reportedly qualify for an ME/CFS diagnosis.
14 Despite the statement that "the underlying pathophysiology (of ME/CFS) is not known", the Guidelines recommend that "graded exercise programmes have been shown to be safe for people with CFS" - yet no supporting reference is offered for this erroneous assertion.
15 Despite the same statement that "the underlying pathophysiology (of ME/CFS) is not known", the authors also assert that a factor leading to negative outcomes is "patient belief that the illness is purely physical in origin". Yet these same patient beliefs clearly echo Komaroff's Am.J.Med view of 2000. One wonders whether joyous assertions by patients of their firm belief in a largely or wholly psychiatric etiology for their ME/CFS have been shown by anyone to be equally consistently correlated with better outcomes?
16 This comment that 'patient attitude' is a major factor affecting outcomes is curious in that it makes no allowance for one or more equally plausible alternative explanations - e.g that whoever has very severe ME (i.e. actually has it) cannot (a) labour under the illusion that it is not a crushing physical fact and/or chemical/biological entity and (b) is very unlikely, therefore, to recover for many years - if at all.
17 As for CBT (cognitive behavioural therapy), sources cited in its support (Fulcher K.Y. & White P.D, 1997; Wearden A.J. et al. 1998; Deale A. et al, 1997 &c) have been criticised for consistently selecting subjects according to Oxford criteria. Moreover, in view of the fact that King and Ward have recently shown that CBT, comparatively, provides no long-term benefit for depressed patients, how plausible can its alleged relevance to ME/CFS be? (King M. et al "Randomised controlled trial of non-directive counselling, CBT and usual GP care in the management of depression as well as mixed anxiety and depression in primary care. in 'Health Technol. Assess.' 2000:4(19):1-83 and Ward E. et al "Randomised controlled trial of non-directive counselling, CBT and usual GP care for patients with depression. 1: clinical effectiveness. 'BMJ' 2000 Dec ;321(7237):1362-3.)
18 There are other notable inconsistencies or editorial oversights, for example several are contradictory estimates of ME/CFS duration. We are told (a) that it is a chronic illness, elsewhere that it (b) can be long term if not indefinite and yet again (c) that many patients return to acceptable levels of functioning over periods of 3 to 6 months!
19 Despite the long interval
since the initial 1997 Draft, this document suggests (but only if we limit ourselves to
charitable conjectures) either haste, inattention to detail and elimination of
inconsistencies, a lack of funding or all of these... The effect, whether or not
intentionally, is a constant muddying of the waters:
"Yes, your condition 'feels' extremely physical but it can be
dealt with effectively by changing your attitudes towards the causes - whatever they, er,
may be..."
"No, we shall not jettison any of the biased and insupportable
material that so offended patients in our Draft One, but we hope you will be cheered up by
our inclusion of emollient statements that contradict the essence of Draft One but which
we are sure will not deflect busy GPs from swiftly finding our unchanged line on treatment
- Graded Exercise and CBT."
"By the way, we have also thoughtfully incorporated some new and
very helpful insights from animal training into our new, smiley, empathic approach to
recalcitrant or combative patients!"
20 These Guidelines are a failure. This flawed document, moreover, cannot be sufficiently changed in its essentials by a 'comments within one month' process as has been proposed.
21 However, I suggest that there are still at least three (3) theoretical options:-
(1) A major rewrite leading to its being (a) wholly rewritten, (b) drastically shortened. This process, requiring months, would take on board all comments such as those above.
(2) Alternatively, it could (and more economically) be consigned to a quiet grave.
(3) Should neither of the above options eventuate, the best remaining alternative is to give the document a rousing public send-off - before settling it into a quiet grave.
I am sure the Australian ME Community will be able to find the resources for progressing any one of the above 3 alternative solutions to a satisfactory - and quiet - conclusion.
At least one patient representative on the UK equivalent of the RACP 'CF & CFS' Working Group warned the Chairman that in his opinion the potential harm to patients latent in certain unsound treatment recommendations in the Royal Colleges Report could in future lead to otherwise avoidable patient deaths and thus to potential manslaughter charges.
TRM, Westwood, Tasmania, July 2001.
[ Top ] [ Guidelines page ] [ Australian/NZ information]
BACK HOME to Canberra Fibromyalgia and Chronic Fatigue Syndrome Page at http://www.masmith.inspired.net.au/
Moira A Smith - Canberra, Australia
last revised 3 August, 2001