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ME/CFS SOUTH AUSTRALIA INC

Registered Charity 3104

Email:
sacfs@sacfs.asn.au

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PO Box 322,
Modbury North,
South Australia 5092

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ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.

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ME/CFS South Australia Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.

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Graded Exercise Therapy
1: Introduction
2: Subject recruitment etc
3: Randomisation etc
4: Outcome measures


Your Experiences

We welcome your contributions – tell us about your experiences with exercise and/or CBT. Has your doctor ever suggested CBT? If so, did you go ahead with the treatment and was it helpful for you?

Please try your hand at a paper critique or summarise (if more appropriate) a research article for an upcoming edition of Talking Point. You can visit the monthly Research Abstracts list to select a referenced paper for this purpose.


Medical articles

Basic information
ME/CFS: a basic overview (PDF, 57KB)
Overlap between CFS & other symptom-based syndromes (PDF, 19KB)
Multiple Chemical Sensitivity (PDF, 32KB)
MCS: Basic Overview (PDF, 18KB)
Fibromyalgia Syndrome (PDF, 34KB)

Information for ME/CFS physicians
Autonomic function in CFS (PDF, 32KB)
Cardiovascular Function & Exercise in CFS (PDF, 33KB)
ME/CFS Guidelines: Management Guidelines for General Practitioners (PDF, 460KB)
ME/CFS: Basic Facts for General Practitioners (PDF, 18KB)
Cognitive Function in CFS (PDF, 32KB)
Research Definition of CFS, known as the CDC or Fukuda (1994) [external link]

Miscellaneous articles
CFS-like states (Jan 6, 2005)
Grade Exercise Therapy for ME… or you? (Mar 2001)
Adelaide research into CFS, fibromyalgia, & brain fog (Sep 22, 2004)

Graded Exercise Therapy for ME... or You? (continued)

Subject Recruitment and Criteria

Study participants were recruited by the Oxford criteria. Unfortunately, this criteria does not diagnose ME/CFS patients exclusively, but rather may allow inclusion of patients who have the symptom of “chronic fatigue” as a result of various other illnesses and disorders. Particularly, patients with mental and primary depressive orders may be mistakenly “diagnosed” as ME/CFS sufferers by these criteria. As Bagnall (2001) suggests, there is evidence for this occurring in the present study, whereby a number of patients were excluded (after their primary selection according to the Oxford criteria) for various reasons, including psychiatric exclusions. Moreover one consultant physician confirmed the diagnosis and we have not been advised whether this physician has a background knowledge of, and experience with, the illness of ME/CFS. I personally find it difficult to accept that one individual alone (per patient) could constitute such a major diagnosis, particularly when the criteria are so subjective. Perhaps a panel including ME/CFS experienced physicians (and possibly other health professionals) would have provided a more valid and accurate diagnosis.

David (2001) provides an interesting discussion of this in her Rapid Response, and reminds us that an expert CDC diagnostic criteria working group (1994) rejected the Oxford criteria. Of course, it must not be forgotten that there has also been much discussion regarding the validity of the CDC criteria. David’s literature observations indicate that the Oxford criteria are conveniently used and “widely accepted” by adherents to the CBT model. David goes on to state “This definition is used for one reason and for one reason only. In practice, they tend to exclude people with any kind of disease process (ongoing infections, neurological problems etc.), leaving psychiatrists and psychologists with a sample dominated by individuals whose health is likely to improve with CBT.”

Yet another potential flaw in subject recruitment is the source of patient recruitment: a “chronic fatigue” clinic. Again, the cross-section of patients utilising this clinic may be far from representative of a true ME/CFS patient population. If this were the case, accurate subject selection would depend even more on valid diagnostic criteria, which as stated, were not applied. This misrepresentation is further evidenced by the fact that at base-line a quarter to a half of “CFS” patients were “working” (refer to Table 2). Clark (2001) suggests that this is “an indication that the study was biased toward those with milder forms of the illness.” We know – through associating or working with patients with ME/CFS – that typical “work” is out of the question for most individuals who have not entered a recovery phase of the illness. It is critical that more research is carried out (and by non-psychiatric researchers) to determine a true indication of the levels of disability (as quantified by objective outcomes such as specific measures of working capacity).

Another frequent problem – and one with significant ethical basis – also noted in the current publication methodology is that, as Clark states, “Those with the severest symptoms have been consistently ignored in research and are least likely to access the few specialist services that do exist.” He continues with “We call for clinicians to take responsibility for those most profoundly affected.” Certainly the sickest individuals (long term and acute in the initial stages of the illness) are significantly marginalised. Surely this contributes to, and continues to perpetuate, the myth that there is no organic basis to illness of ME/CFS. Moreover, the exclusion from the study of patients confined to wheel chair or bed shows complete ignorance of the illness; ME/CFS certainly may fluctuate to the degree where people attain different degrees of limited mobility on a monthly or even weekly basis.

According to this deficiency in recruitment criteria and protocol, perhaps the title of the paper should be aptly renamed to “Randomised controlled trial of patient education to encourage graded exercise in patients with chronic fatigue as a symptom” or “.... patients with symptomology meeting the Oxford diagnostic criteria.”

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