RACP Guidelines for CFS

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

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?

What Laboratory Tests are Appropriate

Management

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

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.

  1. 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.
  2. It should be prepared within an organised, well-planned timeframe.
  3. It should be written after extensive, current literature searches have been evaluated.
  4. The contents should stand up to rigorous debate and peer review.
  5. The document should be professional in its presentation at draft release stages.
  6. 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

References
(supplied by Peter Evans)

Sharpe M, et al. Cognitive behaviour therapy for the chronic fatigue syndrome: a randomised controlled trial. BMJ 1996;312:22-6.
Deale A, et al. Cognitive behaviour therapy for chronic fatigue syndrome: a randomised controlled trial. American Journal of Psychiatry 1997; 154:408-414.
Fulcher KY and White PD. Randomised controlled trial of graded exercise in patients with the chronic fatigue syndrome. BMJ 1997;314:1647-1652.
Weardon AJ, et al. Randomised, double-blind, placebo controlled treatment trial of fluoxetine and graded exercise for chronic fatigue syndrome. British Journal of Psychiatry 1998;172:485-490.
Powell P, et al. BMJ 2001; 322:387.
Sharpe MC, et al. A report ­ chronic fatigue syndrome: guidelines for research. Journal of the Royal Society of Medicine 1991;84:118-121.
Fukuda K, et al. The chronic fatigue syndrome: a comprehensive approach to its definition and study. Annals of Internal Medicine 1994;121:953-959
Friedberg F, and Krupp LB. A comparison of cognitive behavioural treatment for chronic fatigue syndrome and primary depression. Clinical Infectious Diseases 1994;18(Suppl. 1):S105-110.
Lloyd AR, et al. Immunological and psychologic therapy for patients with Chronic Fatigue Syndrome: A double-blind, placebo-controlled trial. American Journal of Medicine 1993;94:197-203.
Bou-Holaigah MD, et al. The Relationship Between Neurally Mediated Hypotension and the Chronic Fatigue Syndrome. Journal of the American Medical Association 1995;274:961-967.
Freeman R, et al. Does the Chronic Fatigue Syndrome Involve the Autonomic Nervous System? The American Journal of Medicine 1996; 102:357-364.
Schondorf, et al. Orthostatic intolerance in the chronic fatigue syndrome. Journal of the Autonomic Nervous System 1999; 75:192-201.
Stewart JM, et al. Patterns of orthostatic intolerance: The orthostatic tachycardia syndrome and adolescent chronic fatigue. The Journal of Pediatrics 1999;135,2,1:218-225.
Klimas N. New England Journal of Medicine HealthNews July 15, 1997, p4.
Suhadolnik RJ. Upregulation of the 2-5A Synthetase/RnaseL Antiviral Pathway Associated with Chronic Fatigue Syndrome. Clinical Infectious Diseases 1994;18(Suppl1):S96-104.
Suhadolnik RJ, et al. Biochemical Evidence for a novel low molecular weight 2-5A dependent RnaseL in chronic fatigue syndrome. Journal of Interferon and Cytokine Research 1997;17:377-385.
De Meirleir K, et al. A 37 kDa 2-5A Binding Protein as a Potential Biochemical Marker for Chronic Fatigue Syndrome. The American Journal of Medicine 2000;108:99-105.
Vojdani A, et al. Detection of Mycoplasma genus and mycoplasma fermentans by PCR in patients with Chronic Fatigue Syndrome. FEMS Immunology and Medical Microbiology 22 (1998) 355-365.
Lerner AM, et al. Cardiac Involvement in Patients with Chronic Fatigue Syndrome as Documented with Holter and Biopsy Data in Birmingham, Michigan, 1991-1993. Infectious Diseases in Clinical Practice 1997;6:327-333.
Deale A, Chalder T and Wessely S. Illness beliefs and treatment outcome in chronic fatigue syndrome. Journal of Psychosomatic Research 1998;45,1:77-83.
A.Skowera, S. Wessely, et al. High prevalence of serum markers of coeliac disease in patients with chronic fatigue syndrome. Journal of Clinical Pathology 2001: 54:335-336

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