BACK HOME to Canberra FM/CFS page
by Peter de Jager
Ms Victoria Toulkidis
Project Officer
Royal Australian College of Physicians
Thank you for sending me a copy of the Exposure Draft of the Clinical Practice Guidelines on the evaluation of prolonged fatigue and the diagnosis and management of chronic fatigue syndrome, the CFS Health Consumer Perspective and the feedback form. I have commented separately on the CFS Health Consumer Perspective.
I have not used the feedback form. While I recognise the need for you to categorise feedback, I found that the format was not suitable for what I wanted to say.
I have read the Preface and Clinical Overview in detail, but only skimmed the remainder of the document. As a person with CFS (PwCFS), I found the task of a detailed review of the remainder of the document to be beyond me, not in terms of ability to understand but in terms of the energy this would have required, which I conserved for such matters as visiting doctors and trying to continue to do useful work. As it is, it has taken me several weeks to compose this letter.
Before I give my comments, however, and in view of some of the comments which I make, I believe that you should know something about me and my background.
In my case CFS had a gradual onset. With the benefit of hindsight, I now realise that I have been ill for at least ten years, but I was diagnosed only four years ago. I have, over the last five years as actively as possible tried various treatments which might ameliorate my symptoms, with some success.
I am also a trained scientist. I have two degrees, the first a B.Sc. (Sydney) in Pure Mathematics and Chemistry, the second a B.A. (NSW) in Economics and Psychology. I have maintained an interest in Psychology and taught it at the tertiary level. Psychological testing has shown that I am highly intelligent, with very high scores on abilities such as Critical Thinking. Fortunately, over the last few months, the “brain fog” (term used by PwCFS to describe cognitive effects of the illness) from which I suffered has lifted, and there have been many periods when my cognitive functioning has not been seriously impaired.
I mention this because I would like you to note that I am qualified to comment on the scientific merit of the Draft, and on the reasoning in it. I also believe that I am qualified to comment on the psychological explanations which occur throughout the document.
I recognise that you are looking for “constructive” criticism. I’m not sure what you mean by that: I have taken it to mean that, where I think the Draft Guidelines are lacking or are incorrect, I should not simply say so but give reasons why. I have done so in the following comments.
In the Preface (Background) the Draft states that: “In 1995, as a result of the Review Committee's recommendations, the Commonwealth Department of Health funded the Royal Australian College of General Practitioners to conduct a survey of general practitioners' opinions and practices in relation to CFS. Meanwhile, representatives of the Review Committee, the RACP and ASCIA met and agreed to develop an expert consensus position regarding the diagnosis and management of CFS.”
Instead, the Draft is entitled “Draft Clinical Practice Guidelines on the evaluation of prolonged fatigue and the diagnosis and management of chronic fatigue syndrome”. The overall thrust of the document is that CFS is part of a “spectrum of fatigue states”. This is no doubt due to the inclusion of “fatigue” in the misnomer for this disease and as a result the Draft focuses on only this one aspect. It makes no sense to do so. My experience, and that of many other PwCFS, is that the chronic pain and cognitive effects are far more serious than the “fatigue” (if that’s what you call the bone-crushing weariness). It makes just as much sense to say that CFS is part of a spectrum of chronic pain states, or of cognitive dysfunction states.
The guidelines should be on CFS, no more and no less.
Except for the inclusion of “Perspectives” boxes, quite often inappropriately, the input of the Consumer Health representative has been totally disregarded in the Draft. The publication of the carefully gathered comments of PwCFS as a separate document, not distributed to health care professionals, means that the experience of the actual sufferers has been effectively marginalised. Its inclusion in the package sent to health professionals reviewing the Exposure Draft would have given them a far better understanding of what CFS is and does to PwCFS than the Exposure Draft. I must admit that I thought long and hard on whether I would submit my comments at all when I realised this, and am concerned that the comments in this letter will be disregarded.
The CFS Health Consumer Perspective document thoroughly covers my own experience in obtaining a diagnosis, trying to manage the effects of the illness and coping with the psychological and sociological results of being chronically ill. The alternative therapies and other useful strategies listed in this document do work for a lot of PwCFS, and should not be glibly dismissed.
The overall effect of the guidelines is to blame the patient for not getting better (having “wrong beliefs” about the disease). This is insulting and demeaning.
The guidelines should “Listen to the Patient”.
It has been reported that at least one member of the Working Party did not attend any meetings and does not have any CFS patients. I also understand that other members of the working party are not actively involved in treating PwCFS. Persons with a background in Psychiatry comprised two thirds of the subcommittee which wrote the Draft. This has had the effect of biasing recommendations for diagnosis and treatment towards psychiatric intervention and devaluing the contributions biochemists (especially the University of Newcastle team) are making towards understanding the way in which PwCFS’s bodies malfunction. It has also resulted in many treatments and therapies which have proven to be of benefit to PwCFS being disregarded or dismissed as “unproven”.
The guidelines should be rewritten by a team of doctors and medical scientists actually treating and researching CFS.
The inclusion of a range of fatigue states as the subject matter, and the lack of adherence to a rigorous definition of which subjects are suitable for CFS research (such as the CDC 1994 definition) in the studies cited, means that the total sample on which conclusions are based is heterogeneous. As such, it is no wonder that generally no conclusions could be reached by the Working Group! However, it also means that those conclusions which are reached are invalid.
This is because the guidelines have not recognised a basic logical fallacy. Just because some members of a heterogeneous group (as an example, those fatigued due to depression) find a treatment beneficial (let’s say CBT) does NOT enable one to form the conclusion that all members of the group (including those actually suffering from CFS) would benefit.
The guidelines should restrict studies used to reach conclusions to those which adopt a rigorous definition of suitable research subjects.
One glaring instance is the consistent association of psychiatric morbidity (depression and somatoform disorders) with CFS. Has it occurred to the writers that, with the rate of misdiagnosis of CFS, many persons who actually have been seriously ill with CFS for a number of years but have not been diagnosed as such would have a prior history of being anxious and depressed? Do they realise that the diagnostic instruments which lead to an evaluation of depression or somatization attribute the effects of an undiagnosed illness to a psychological origin? Referral to a psychiatrist, especially one who regards CFS as a post-viral behavioural disorder, would certainly not be helpful.
The guidelines should attempt to interpret findings from the patient’s viewpoint.
One instance is the statement that the thought that “minute amounts of environmental toxins may be causing irreversible immunological or neurological damage” is “unwarranted”. Do the writers know this for a fact? Chromosomal damage definitely isn’t being done? Where is the research that proves this is so? Need I remind the writers that until recently the medical profession ridiculed the belief that ulcers were caused by a bacterium?
The working party should appoint one of its members as a “Devil’s Advocate” to systematically challenge each assertion in the Draft to ensure it is supported by evidence.
As any first year student in statistics or psychology should learn, correlations are just that (one variable has a relationship with another variable), and cannot be taken to imply causation. The relationship may, for example, be explained by the effect of any number of further variables. The Draft does not recognise this.
A particularly silly example is the Draft’s recommendations following the observation of a correlation between a person’s belief that the illness is purely physical in origin and poorer outcome. I do not dispute that this correlation exists. However, the following statement is preposterous:
“Given that simplistic attributions of a purely physical basis for the illness are associated with poor outcome, people with CFS should be encouraged to adopt the widest possible view of the psychosocial, medical and rehabilitative strategies to promote recovery.”
In other words a belief in a purely physical origin should be discouraged, because it will improve the outcome! If you change your view of the illness you will get better! The “simplistic attribution” is causing you to be ill!
How about this variable positively affecting both variables: The person really is physically ill. Because they are, they attribute the illness to a physical origin and they do not get better (at least not by altering their view).
The Draft should be rigorously reviewed and all instances of causation being assigned to a correlation should be excised.
In conclusion, I consider that the Draft should be substantially rewritten, preferably by a more knowledgeable working party and subcommittee. I consider that the revision should be of such a magnitude that the result of this rewriting should be a second draft, again distributed for public comment.
Peter de Jager February 1998
[ 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 17 February, 1998