AHMF: Guidelines response ME Association of Australia

ME/Chronic Fatigue Syndrome Association of Australia

RE: CHRONIC FATIGUE SYNDROME CLINICAL PRACTICE GUIDELINES

Dear Dr Loblay,

Thank you for the opportunity to comment on Draft Two of the Guidelines. I have not followed the methodology of response suggested by the email forwarding the Guidelines because I do not believe that our organisation, representing consumers around Australia, can support the current version.

It is my hope that the members of the working party will meet in a face to face situation to fully debate the contents of Draft Two in light of all of the responses and suggested references put before you. Surely CFS patients are entitled to the very best outcome possible from a guidelines document. General Practitioners, the significant target audience for this document should be able to find it useful, relevant and accurate.

There is no doubt that CFS is a very complex illness of unknown pathophysiology and that research throughout the world is diverse, continually changing, challenging and exciting. Please ensure that the Clinical Practice Guidelines document reflects this.

Please aim for a document that reinforces honesty in the doctor/patient relationship and offers realistic expectations in terms of treatment and outcomes.

Diagnosis of CFS

The importance of taking a comprehensive clinical history should be emphasised. The GP might need to allow for longer than a 10 minute consultation.
The profound nature of the fatigue should be noted. The fatigue state can alter during the day.
"no abnormal physical findings" —What about swollen lymph glands, sore throats, low grade fever etc as mentioned in the text box.
Investigation—Please refer to the papers presented at the Brussels Conference in 2000 and the Fifth International Research and Clinical Conference Jan 2001. Also why not investigate infectious disease serology at time of early onset? No mention of Urinalysis, spectral scans etc. The Doctor and patient should surely be in the best position to decide what testing is appropriate.
Under Management please delete first sentence. We are dealing with established CFS and it is dangerous to blur fatigue with CFS. Many GP's treating significant populations with CFS report the recommendation to rest in the early stages of the illness and find it beneficial to the patient.
Cost of CFS to Community—These figures are outdated. Please quote the 2001 dollar figure. Is the assumption still at 0.02% of population?
Physical Activity—Is this fact or opinion? Again this is a very individual decision. Graded exercise programmes are safe for some but not all patients. What exercise is meant in this context? Patients at the severe end of the spectrum will not even be able to walk to the letterbox.
Sleep—sleep hygiene has little relevance in an illness such as CFS. You state that there is no direct evidence to support the position taken. I can also sight clinical experience that states that sleep hygiene is of no benefit. Have you ever watched a very ill CFS patient trying to stay awake? It is a pathetic sight. They simply cannot do it, no matter how strong willed they maybe. What is noted is that as the patient returns to good health, the ability to return to more 'normal' sleep patterns occurs. Please delete sleep hygiene as a management strategy.
The inclusion of the SPHERE (Hickie et al. 1996) is a major concern. When doing the check against symptoms most CFS patients would score a perfect positive "yes" response to each. This reinforces concerns about how this illness is really viewed. If judged on SPHERE the psychological state would be poor. We contest that this is not the average situation with CFS patients and ask that reference to the SPHERE be removed.

Psychological and Social Support

Support groups do play an important role, and whilst I agree that advice from individuals does vary, it should be stated in the document that many support groups run conferences and training sessions for medical practitioners interested in the illness. These doctors include GPs, specialists and researchers. Some sessions attract CME points. In the last ten years it has been my observation that support groups, when requested, have supplied increasing amounts of literature to the medical community.

How should the context of the illness be assessed?

In our view this paper overlooks the severe end of the spectrum—(p23) "At the severe end many are housebound." Many people with CFS are housebound however the severe end is far worse. At the severe end they will be bedridden, unable to feed properly and unable to attend to personal care. It is very important that this is recognised because access to care through services such as HACC will only be available if this recognition is given.
"The diagnosis after six months" (p23). A skilled GP who has taken an excellent medical history should be able to intervene so that the person's world does not fall apart whilst waiting for the magic time to arrive. Appropriate advocacy should happen as soon as it is required. It is a little like asking how dead is dead? Commonsense dictates to do whatever is needed to support the patient.

What Laboratory Tests are Appropriate

Again there is a blurring between fatigue states and CFS. This paper should refer to CFS only.

Management

It is noted that a range of antidepressants and other CNS agents have judicious approval. It should be noted that some patients with CFS have very bad reactions to this treatment regime.
CBT can have a benefit for some groups of patients however it must be managed in conjunction with a skilled practitioner.
The disease education model, advocating self-management, is more beneficial than the rehabilitation model. This model is too inflexible to work for CFS patients. This illness of unknown origin takes its course.
Social withdrawal is not a widely advocated treatment and we suggest that reference to this be removed from page 32.
Rest, particularly in the early stages is advocated. Are you really suggesting that sick people keep working and performing at their "normal", well pace. In other words pushing themselves to exhaustion. This section needs a rethink!
The sleep hygiene, as already discussed should be removed. In our view it is inappropriate.
You fail to address the issue of food intolerance and management of some symptoms. Please include research on this subject.

What are the disadvantages of a diagnosis of CFS?

Please remove this section, it is most unhelpful. If a patient has any other illness the doctor will tell him or her so. Why is CFS different? This illness, like many others, has its full spectrum of extremes from severe to mild. That is a fact of life. Some survive bowel cancer and others do not, however if diagnosed correctly all will have the diagnosis bowel cancer.

The role of patient support groups

This has been discussed earlier. If you intend to leave it in please allow a consumer to have significant input into the final preparation of this section.
You again ignore the role of the support groups in providing information to the medical community and providing money for research. This is self-help at its very best.

We ask that this document be read in conjunction with the reference list supplied by Mr Peter Evans [below] and the paper submitted by Mr Jim Oakley with specific emphasis on references to a number of scientific papers that are either misquoted or not quoted in Draft Two

In conclusion I must state that our organisation no longer supports the guidelines. We were originally highly supportive and co-operated in every way possible.

A document such as this should be prepared by Doctors who have significant experience in treating CFS patients and those who work in all areas of CFS research.
It should be prepared within an organised, well-planned timeframe.
It should be written after extensive, current literature searches have been evaluated.
The contents should stand up to rigorous debate and peer review.
The document should be professional in its presentation at draft release stages.
The outcome should be positive for the medical community and CFS consumers.

To accept anything less than this is totally unjust to the CFS patients. We do not want this and I can only hope that you do not want to be responsible for this outcome either. Any working party member who responds, "Yes, that the document is fine", clearly has not read it in its entirety and is unfamiliar with the current research. In light of the vast array of information put before you please do not continue with the publication of these guidelines.

Yours sincerely,

Judy Lovett, on behalf of the Board,
ME/Chronic Fatigue Syndrome Association of Australia

(supplied by Peter Evans)

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