ACT ME/CFS Society Inc
The Basis of the Guidelines
- The literature review presented in the guidelines is incomplete and biased; information reporting the organic view of CFS is under-represented or substantially absent, whereas that involving psychiatric opinion and psychological aspects is correspondingly over-represented. There is evidence of specific organic abnormalities in significant numbers of people with CFS, and credible information representing the entire range of studies should be presented for completeness, with or without a high evidence rating.
- There is concern that application of the requirements of evidence-based medicine to psychological/psychiatric research gives credibility to subjective expert judgement in this area, which would not be granted by the stricter requirements of empirical evidence within organic medicine.
Testing and Diagnosis
- The routine screening tests recommended in the guidelines are insufficient for the reliable diagnosis of CFS. Some specialised tests, which usually return an abnormal result in CFS patients, would confirm the diagnosis and potentially increase the understanding of the illness. Significant organic abnormalities should be followed up.
- Symptoms newly emerging in a person with CFS should be investigated in their own right and not automatically attributed to the CFS.
- The guidelines in their current form are not sufficiently helpful to the ordinary GP to warrant release. They are impractical and of little use to a GP: they are not clinically applicable as they stand.
- There is no adequate clinical description of CFS. It is not characterised or described well enough for recognition as a characteristic syndrome distinct from other, similar conditions. The syndrome is characterised by a pervasive sense of unwellness rather like having the 'flu', accompanied by a pattern of other symptoms. The fatigue experienced within CFS has special characteristics it is devastating, it appears unpredictably, it fluctuates without apparent cause. The fatigue is exacerbated by physical or mental effort and can be delayed by 24 hours or more.
- There is insufficient information provided for GPs to support their guidance of people with CFS (especially the newly-diagnosed) in managing their own condition. Examples include how to ration energy, prioritise activities, pace themselves, adjust aspirations, modify lifestyles, and how to balance gentle activity and rest. This is the information most needed in practice.
- A person with CFS needs to learn which factors commonly exacerbate his/her symptoms or cause a relapse; examples of these factors may include over-exertion (either mentally or physically), infections, stress, alcohol, general anaesthetics and exposure to certain chemicals. (The person's tolerance to exertion may vary significantly over time; an activity tolerable at one time may well be quite intolerable at another.)
- With the patient's consent, treatment options based on anecdotal evidence should be permitted on a trial-and-error basis: not all patients can or should have to wait for the gold standard of double blind, placebo-controlled trials.
- Bearing in mind that the root causes of CFS remain poorly understood and that chronic infection may play a role in some cases, symptomatic treatment has a valid role.
- Inflexible, graded exercise programmes are inappropriate. After activity has been reduced to a level that is tolerated by the individual for a long period, the aim may be carefully paced increases in physical activity, but this will not be practical in all cases. Patients should not be pushed to physical or mental exhaustion. Small amounts of physical activity may be encouraged (but never enforced).
- Psychotherapy (cognitive behavioural therapy in particular) is recommended for all patients with no acknowledgement that it is inappropriate (indeed potentially harmful) for some patients. Some CFS patients report substantial harm from psychotherapy applied inappropriately, and significant resistance to 'blanket' psychotherapy can be expected.
- Furthermore, cognitive behavioural therapy (CBT) is but one of the schools of psychotherapy, and none of the schools provide techniques appropriate for all issues, all patients or all occasions. Recommending CBT to the exclusion of the other schools is premature and unwarranted without an examination of the alternatives and credible rejection of them. CBT is positively harmful in some circumstances.
- A heterogeneous group of people fit the current diagnostic criteria; thus it is unlikely that a single treatment strategy would help everyone. There are people at different stages of illness and different degrees of severity. One individual can respond differently to a given treatment at different times. There is too much variation between individuals and also over time within one individual for prescriptive guidelines to be useful. CFS is no illness for cookbook doctors; they need open and enquiring minds.
- The guidelines do not fully acknowledge the especially difficult and vulnerable position of children and adolescents with CFS. Relevant factors include their lack of autonomy, the added financial strain on parents, their limited or non-existent ability to manage even part-time jobs for employment preparation and income supplementation, and their limited career prospects because of their illness.
- The guidelines need strengthening in this area. Doctors need to be aware of the medico-legal issues affecting patients and should seek professional support if necessary. Different legislation may apply in to different aspects of a case (eg superannuation, social security, insurance and life assurance) and the interpretation of law requires some expertise. Doctors should be prepared to comment aptly and in a manner directed to the appropriate legislation.
The guidelines as they stand are open to abuse and could be used to the detriment of the health of people with a chronic illness. There is still concern about the possibility of patients being forced into inappropriate treatment options under this draft of the guidelines; children are particularly at risk. There are too many stories of children's separation from their families because of the mislabelling of CFS as psychiatric and disagreements over its appropriate treatment. Such cases should not continue.
With all of the above points in mind, this draft of the guidelines is still considered inadequate and potentially damaging. It is recommended that they be withdrawn and redrafted ab initio.
It may be appropriate to await publication of the Canadian clinical definitions and treatment protocols for ME/CFS and fibromyalgia. It is understood that the Canadian project achieved a consensus conspicuously lacking in Australia, and its documentation may provide an appropriate basis for Australian guidelines.
Frances B Sandbach
On behalf of the Committee,
ACT ME/CFS Society Inc
Alison Hunter Memorial Foundation
PO Box 6132 North Sydney 2059 Australia
Phone/Fax +61 2 9958 6285
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