AHMF: Guidelines response Sheath

Joan Sheath

To whom it may concern:

Herewith is my response to the "Chronic Fatigue Syndrome Guidelines, Revised Draft 2001", released 28th June 2001 for comment...

I have felt very angry and disappointed as I have read through this document, because:

Basically the underlying recommendations for diagnosis and management of this very serious physical illness have not changed from those contained in the First Draft, released in December '97; in which the 'cornerstone of management' recommendations were Cognitive Behavioural Therapy, graded exercise, and sleep restriction, all of which are very harmful in their effect on people with ME/CFS. This is despite the many comprehensive, referenced, and first hand responses refuting those recommendations, having been sent to the RACP Working Party with the release of the '97 Draft, all totally ignored.
One is left without confidence that these Guidelines will ever produce any sort of real help for the increasing numbers of people so affected within our community. They will, in fact, be harmful! This Draft 2001 is built on older studies, biased toward the psychological and psychiatric; and with a glaring absence of inclusion the many studies of the past several years, where so much evidence of biological abnormalities is being shown, thereby terminating any possible advance in knowledge of understanding; of appropriate treatment; or of possible cure. On Page 4 it is stated 'They (the Guidelines) are based on information available at time of publication'. Not true!
These Draft Guidelines have been released for comment, yet this is an incomplete document: no proper references have been given, just the name of the researcher/s and year, so that just which study is being referred to, is not known. The accompanying note to this document states that 'the references are currently being updated', also some tables will be updated, 'while you are reading the text'. This is hardly fair or professional, and is inexcusable, after almost 4 years. What is the agenda behind this?
Despite stating that the cause is not known at present, these guidelines have put a lid on any future attempts to understand this very serious, total body illness, by restricting pathology testing to just the very basic tests to exclude other conditions. This document lists a number of tests which it states have no role in standard laboratory evaluation of people with CFS: Viral studies, tests for Lyme disease, immune system tests, urinary protein metabolite screening, neuro-imaging studies (which would include Spect & MRI brain scans), and tests for auto-immunity, all of which have been documented to be abnormal in people with CFS. (Note: These Guidelines state 'characteristically, there are no abnormal physical findings in people with CFS'). Rather, it gives the overall perception of dismissal of all evidence pointing to a multi-faceted condition; of profound disturbances of the neurological, endocrine, & immune systems, and of cellular metabolism, which have been documenterd to be abnormal in people with CFS and related illnesses; and thereby limits possible management to unproven psychological processes.
One is led to believe that people affected with ME/CFS and allied illnesses are all to be classified under the term 'Neurasthenia', a goal Australian psychiatrist and member of the Working Group, Prof. Ian Hickie, is known to be aiming for. Ref. a paper, "Reviving the Diagnosis of Neurasthenia" published by Dr Hickie in 1997 in the journal 'Psychological Medicine'. There are a number of disturbing statements in Draft 2001 which are quite contrary to actual fact, eg. "no abnormal physical findings", "up to two-thirds of adults with CFS have either prior, or concurrent diagnosis of major depression", "poorer outcome associated with a person's belief that the person's illness is purely physical in origin", "Cognitive Behavioural Therapy is effective for people with CFS", "Graded Aerobic Exercise is safe and effective for people with CFS". Fatigue is only one symptom of ME/CFS, and is quite unlike all other fatigue states, to which ME/CFS is being linked in this document. It is known that Dr Hickie believes 'Neurasthenia' should include all the fatigue syndromes (prolonged fatigue, chronic fatigue, and chronic fatigue syndrome), and that fatigue disorders should have their own specific category in the psychiatric classification systems DSM-IV; ICD-10.
Another disturbing aspect of the Draft 2001 is the importance placed on psychological evaluation using self- report Questionaires GHQ-30, SPHERE, and interview schedules such as PRIME-MD. Professor Ian Hickie is co-author of 'SPHERE'. The questions listed in SPHERE may be seen in an attachment to my response. All of this shows just how little regard there is for the seriousness of the multi-system disorder of ME/CFS, and how every symptom to which anyone answers "yes", will be considered indicative of a mental disorder.

I write these comments as one who has led the ME/CFS/FM Support Association Toowoomba Inc. since 1991, retiring from the Presidency last November due to deteriorating health (but continuing as News Sheet Editor); and as a sufferer of ME for almost 30 years. I have been very aware of the development and progress of the CFS Clinical Practice Guidelines since their inception, and have closely followed research progress around the world and in Australia. I had the privelege of attending the CFS International Conferences held in Sydney in 1998 & 1999, and have followed in detail the presentations at other major conferences since: the 2nd World Congress in Brussels in 2000, and the 5th AACFS Conference held in Seattle this year. The evidence of multiple biological abnormalities is on record for all to see.

Why is the Working Group ignoring all of this information? Why are there no recommendations for provision of much needed ME/CFS specialist centres to assess the extent of this very serious problem, to try to find ways of preventing it's spread, while most importantly of all, to find ways of providing true relief for those whose lives are devastated by this serious illness ?

These Guidelines are psychologically biased, and will be very harmful if implemented, leaving people with no hope for true understanding and helpful management, and only perpetuating or worsening their condition.

It is my belief that the CFS Guidelines Draft 2001 should be scrapped, as should the Working Group, who have not proven themselves able to provide an objective, honest and unbiased assessment of the evidence relating to so serious a health problem affecting an increasing portion of the community world-wide.

Yours sincerely,

Joan Sheath.