AHMF: RACP letter appendix 14

Betrayal of the Severely Ill?
Appendix 14: Letter from ME/FMS Country Network Australia to RACP Working Group

ME/FMS COUNTRY NETWORK AUSTRALIA
PO Box 6024
South Lismore,
NSW 2480
Phone & Fax: (02) 6621 5047
email: nrmecfs@nrg.com.au
web page: http://nrg.com.au/~nrmecfs/

18th April 1998

Dear Working Group Member

We support the letter from the Alison Hunter Memorial Foundation regarding the Draft Clinical Guidelines for Chronic Fatigue Syndrome.

These guidelines have and are still doing untold damage and suffering to people with this illness and those yet to be diagnosed.

The guidelines do not address the severity of the illness and do not recognise deaths which occur as of complications.

Some of the objections we see to the guidelines are:

People with CFS have concurrent depression. (This statement indicates a link between CFS and a psychiatric disorder.)
Characteristically, there are no abnormal physical findings in people with CFS. (A lot of research shows otherwise.)
Avoiding day-time naps. (Sufferers do not see this as a practical measure.)
When adults present for medical assessment with fatigue states the most common alternative is major depression. (This statement again refers to sufferers in a psychiatric context.)
The factors associated with poorer outcomes include older age, concurrent psychiatric disorder, and the person's belief that the illness in purely physical in origin. (This statement infers that there is a known cause where there is not).
Cognitive-behavioural therapies for people with CFS link the principle of good clinical management with varying degrees of graded physical activity and psychological intervention. (This appears to endorse a specific treatment which is yet to have its cause determined).
On balance, the evidence strongly suggests that cognitive-behavioural treatment incorporating graded physical activity should be the cornerstone of management of people with CFS. (As above point, together where is the evidence?)
Inevitably, members of CFS support groups tend to include those with the most prolonged illnesses. Therefore, 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. (This is purely an opinion of the author and has no scientific backing.)
One death by suicide and two unrelated deaths occurred in 2075 people followed up in 19 published studies of the outcome of prolonged fatigue and CFS. These studies included mean follow-up periods ranging from six months to four years, thus suggesting that suicide rates and overall mortality are not increased in people with CFS. (There may be deaths not attributed to CFS. 2075 people is not a large sample size.)

We ask that all the information and submission be carefully scrutinised and that they then be distributed for consumer comment.

To be truly representative of our members we implore you to read this and listen to our concerns.

Yours sincerely
Merle Fullerton JP
Chairperson

Return to the AHMF Letter to the RACP.