AHMF: RACP letter appendix 12

Betrayal of the Severely Ill?
Appendix 12: Letter from QLD ME/CFS Society to the RACP Working Group

M.E./Chronic Fatigue Syndrome Society of Queensland Inc.
(Incorporating Fibromyalgia Syndrome)
PO Box 938,
Fortitude Valley
Qld 4006
Phone (07) 3832 9744
Fax (07) 3832 9755

To the Members of the Working Group:

We wish to endorse the points made by Christine Hunter. We wish to add that-
(a) the failure of the draft to emphasise that exercise/activity should always be kept within the patient's current tolerances, and
(b) it's psychiatric emphasis has already led to an unpleasant incident in Queensland involving the severer end of the CFS spectrum -

A young woman who had been hospitalised due to the severity of her illness (she was having difficulty remaining upright due to her blood pressure collapsing) was removed to a psychiatric ward against the wishes of her treating physician. The physician was actually threatened with the loss of his visiting rights to the hospital if he did not consent to the move. The young woman had a copy of the draft placed in her face with the "exercise bits" highlighted. She was told by an infectious diseases physician that she could expect to faint several times, but it was only through exercising that she would get better. The staff have been saying to her that she is just a "naughty girl" (she's 26 and a qualified physiotherapist) and "doesn't want to get better". Her mother is currently sleeping on the floor of her room to prevent psychiatric patients invading it at night, or staff members verbally criticising her or attempting to make her do physical tasks beyond her capacity.

We believe that many doctors reading the guidelines will assume that patients must be exercised, at all costs, at levels which are quite unrealistic, and that patients who become distressed or sicker are "not trying", or "don't want to get better" unless it is strongly emphasised that:

Patients must remain within their current physical tolerance and not exacerbate their symptoms by their activity, and
There are a number of severely ill patients who can only do a very small amount of activity, are largely bed bound and require constant care.

If this is not done, well meaning doctors are likely to injure patients, and patients are likely to avoid medical treatment for fear of simply being tortured. We believe that, on the current state of draft, it will not be long before a patient is severely injured, and doctors face civil liability.

Yours faithfully
Peter Evans
President

Return to the AHMF Letter to the RACP.