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ME/CFS SOUTH AUSTRALIA INC

Registered Charity 3104

Email:
sacfs@sacfs.asn.au

Mailing address:

PO Box 322,
Modbury North,
South Australia 5092

Phone:
1300 128 339

Office Hours:
Monday - Friday,
10am - 4pm
(phone)

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.

Disclaimer

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.

Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.

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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)

Outcome Measures

Much discussion has ensued regarding the problems associated with the “fatigue scale” developed (conveniently) by Hickie and colleagues, and the limitations of the MOS subscale, both used to assess outcome (David 2001; Goudsmit 2001). In general, both these measures are particularly subjective and cannot differentiate between patients with CFS and depression, or between degrees of fatigue. David (2001) mentions: “According to Bentall et al, the physical functioning subscale scores ‘directly address this issue.’ They don’t. They do not cover avoidance as much as perceived limitations in terms of running, walking at least one block, climbing at least one flight of stairs, moving a table, lifting or carrying groceries, go bowling, and bathe/dress oneself. The scores do not indicate whether these or any other activities were reduced by 5%, 15%, or by 50%.” [Note: ‘this issue’ (as stated above) refers to the difference in avoidance of activity at base-line and after intervention for treatment groups as compared with the control group.]

Accordingly, the only symptoms assessed as intervention outcome measures were fatigue, emotional distress and sleeping problems. Many ME/CFS patients could think of numerous other symptoms (including cognitive dysfunction, sore throat/glands and orthostatic intolerance) that might warrant measurement through significant levels of disablement imposed. A more appropriate outcome measure would have been to assess how many intervention treated subjects were capable of performing specific (and realistic to employment potential) working tasks at the end of the trial as compared with the baseline at the beginning of the intervention. A comparison with the controls (not receiving any level of the intervention treatment) should give some indication of usefulness of this intervention in establishing workability. Given author emphasis on commenting that the therapy is “shorter,” “requiring less therapist skill” than CBT and “cost effective” it would seem logical that they make some comment regarding out-come in terms of the level of labour/working capacity restored. After all, this is a very important component of government assessment of the extent of the cost of an illness to the country. Whether this workability is sustainable (and is therefore cost effective in the long-term) is another question altogether – certainly patients should have been followed up several times further, many months beyond the completion of the intervention.

References

Bagnall G (2001), Medical accountability (http://www.bmj.com/cgi/eletters/322/7283/387#EL1).

Bentall R (2001), Reply to our critics (http://www.bmj.com/cgi/eletters/322/7283/387#EL7).

Chaudhuri A (2001), The weakest link (http://www.bmj.com/cgi/eletters/322/7283/387#EL3).

Clark C (2001), The importance of a therapeutic partnership with M.E. (CFS) patients (http://www.bmj.com/cgi/eletters/322/7283/387#EL5).

David S (2001), Unfair response is most revealing (http://www.bmj.com/cgi/eletters/322/7283/387#EL9).

Goudsmit E (2001), Response to Powell et al (http://www.bmj.com/cgi/eletters/322/7283/387#EL2).


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