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SUBMISSION ON DRAFT CFS GUIDELINES

Dear Ms Toulkidis

We are grateful to the Working party for giving us an opportunity to comment on these guidelines and acknowledge the work that has gone into them.

Our overall impressions are as follows:

• Because the document talks about chronic fatigue and Chronic Fatigue Syndrome it is confusing for readers to know whether the research cited refers to a "fatigue" state or to diagnosed Chronic Fatigue Syndrome.
• We are very disappointed that the consistent evidence of patient experiences as presented in the Health Consumer Representatives perspective has been virtually ignored in the preparation of these draft guidelines. This is particularly relevant to providing practical information on management which is lacking in the current document.
• There has always been a paucity of research in CFS for comparative purposes and of the studies that have been reviewed by these guidelines, there appears to be very heavy emphasis on studies undertaken by one particular research group.

Specific comments on the guidelines are attached.

In view of the degree of misunderstanding and misinformation about Chronic Fatigue Syndrome that is already in the community, it is important that these issues are addressed in the guidelines. Failure to do so could prove to be detrimental to patients and unhelpful to treating doctors. We believe that this is an important document and that a second draft should be released for comment.

Yours sincerely
(President, ACT ME/CFS Society Inc.)
February 1998

Specific Comments

p.2 Management: As the clinical criteria for CFS have already been stated it seems unnecessary to include emotive terms such as malingering and mere depression at this point.

p.2 Understanding illness: "No pharmacological agent has been reliably shown to be effective treatment for CFS" We would suggest that palliative medications such as pain killers, muscle relaxants, antidepressants are very helpful in managing the symptoms.

p.3 Physical activity: The mistake is that people are pushing themselves too hard, not that of putting things off - this is good management. Therefore: delete "of putting off chores or social engagement until they feel better" then add: "Patients should be counselled to work within their limitations imposed by their illness, and not try to push through their pain and fatigue barriers, as this only exacerbates the condition."

p.3 Sleep: see comments for p.21 Sleep Management.

FAQs boxes: FAQs are about issues that are important to patients. However the space allocated to cover the issues is insufficient. Either the answers to questions should be complete and correct, or they should be deleted.

Q. Are people with CFS eligible for Sickness Benefits? This question should read - "Are people with CFS eligible for income support through Centrelink (formerly DSS)?"
Answer: As with any other medically certified illness or disability, people with CFS may qualify for income support. The doctor needs to be aware of the eligibility criteria for the relevant payments, which are Disability Support Pension, Sickness Allowance, Newstart (Incapacitated) Allowance and Youth Training (Incapacitated) Allowance.

Q. How long will it take to recover? In the answer the term "high likelihood" of recovery implies a much greater than 50% probability. This likelihood of recovery is not supported by the evidence in the literature.

Q. Can people with CFS continue working? Starting the answer with "Yes" is totally misleading as it implies that everyone is capable of continuing full-time work. Most of the successful compensation claims relating to CFS have been based on exacerbation of symptoms based on an inappropriate return to work. This is an individual assessment that needs to be based on many factors. An absence from work should be followed by a graded return to work.

Q. Are there long term problems following CFS? This answer should be amended to read, "there is no evidence that this condition is associated with increased risk of infection or cancer."

p.l1 Mental state: This section seems to be totally unrelated to this document and is very misleading when related to people suffering Chronic Fatigue Syndrome.

p.12 Does chronic fatigue overlap with other illnesses? This title should read, "Is chronic fatigue associated with other illnesses?" This whole section illustrates the confusion for the reader between chronic fatigue and Chronic Fatigue Syndrome. If depression is mentioned in conjunction with Chronic Fatigue Syndrome, the probability that the depression may in fact be associated with the stresses involved with suffering a very debilitating chronic illness should be raised.

p.15 Chapter 3 The emphasis is on rates of recovery but does not readily give a clear picture as to what percentage of CFS patients remain significantly disabled or in fact deteriorate.

p.15 What is the outcome of fatigue states? Stating that "patients were very unlikely to develop other medical conditions" is a direct contradiction of the statement on p. 17 and is contrary to advice given out by CFS Societies. For example, the NSW CFS Society Newsletter "M.E. and You" states in each issue that:

"It is important to have regular checkups. Not all symptoms may be caused by CFS, and should you develop any new symptoms, or experience the worsening of an existing one, see your medical practitioner. CFS does not confer immunity to other illnesses. Routine health checks such as blood pressure and cholesterol, tests for bowel cancer, etc and for women, breast checks and smear tests, are still just as important. Keep as healthy as possible."

Point 4 in box - This is an unnecessary and unhelpful comment - it appears to make highly selective use of the evidence.

p.17 The inclusion of a paragraph about the expectations of a treatment trial for CFS seems misplaced in a chapter on patient management.

p.20 Behavioural treatment
With regard to the behavioural component that encourages resumption of physical and mental tasks there is a need to acknowledge the limitations of CFS.

It is important to emphasis the importance of planning a program that is totally individualistic and flexible and not set each person up against a benchmark of "normal" progress; to note the need for such a program to be undertaken with a great deal of supervision and support; to highlight the frustrating relapsing nature of the illness ie what is possible one day may be unattainable on another day; to note that the effects of over-exertion often only set in 1 - 2 days after the exercise has been undertaken; and to acknowledge the requirement for patients to undertake other lifestyle chores which may not be possible in addition to a specific exercise program.

Trying to asses how much activity is enough and how much is too much is a constant juggling act for all CFS sufferers, and it would be naive to suggest that an outside person could offer a better judgement on this issue. Listening to and working with the patient is essential in obtaining any positive outcome with this type of program.

With regard to cognitive treatment there is an erroneous assumption that all people with CFS have the stated belief system which is asserted in the document to inhibit recovery. It should be emphasised that the need for this type of therapy must be carefully assessed and is certainly not appropriate in all cases. When there is reluctance to undertake a level of activity that a sufferer has learnt by experience will cause a relapse, this should not be misinterpreted as "fear of physical activity". Social isolation which occurs as a result of having to drop out of normal activities and is a problem to many CFS sufferers should not automatically be assumed to be a deliberate behavioural choice.

The research finding that a belief in a physical cause impedes recovery is challenged on the limited findings in this field to date and as no definitive cause has yet been identified, the general practitioner has no "knowledge base" to refute this belief. It would be more helpful to discuss the hypotheses and acknowledge that no single cause has yet been found.

Describing Cognitive Behavioural Therapy as a cornerstone of management of people with CFS is inappropriate unless specific proven guidelines on how to conduct a universally effective program for all levels of CFS sufferers can be provided to the medical practitioners who would be responsible for its implementation.

p.21 Sleep Management Having exactly 8 hours' sleep a night is a goal sought after by most of the population, but unfortunately not the reality. Many people require more sleep to function adequately and for many CFS sufferers, a short nap in the afternoon can enable them to continue functioning for the rest of the day. Whilst a regular sleep pattern would be welcomed by most sufferers, it is inappropriate to set such rigid standards. Again there needs to be a focus on the individual's needs.

p.21 Should a doctor put the person with CFS in contact with support groups?

"Inevitably, members of CFS support groups tend to include those with the most prolonged illnesses (Sharpe et al. 1992). Therefore, the groups may inadvertently reinforce stereotypes of chronicity and disability. Depending on the nature of the groups, some may serve to increase alienation from medical and government agencies and encourage forms of treatment that lack scientific evaluation."

The comment on the negative effects of patient groups is unsupported by any evidence and is in direct contradiction to the comments on the role of support groups on page 4. This is offensive to the State Societies who go to great lengths to encourage patients to be under the supervision of a medical practitioner and to provide balanced information on treatment options.

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Moira A Smith - Canberra, Australia
last revised 8 March, 1998