Directly from the ‘Horses’ Mouths’

Doris M Jones MSc (Reference Group Member, CMO’s Working Group)

In July 1998 the then Chief Medical Officer, Sir Kenneth Calman, announced the setting up of a Working Group on CFS/ME, to include patients, carers, patient group representatives as well as medical experts, including Psychiatrists.  The aim was to find out what really worked in treating these conditions and based on findings, to then compile Guidelines on Diagnosis and Treatment for Clinicians and other Health Care Professionals.

Over 80 people took part in this 3 year exercise, including myself.  Patient Support Groups as well as individuals took great pains to get feed-back directly from patients on what kind of treatments worked and which did not.  Eventually details were available on 3074 patients, and the summarized results showed very clearly that:

1.               The most helpful strategies were:

a)     Pacing activity with rest       (2300/2568 cases = 90%)

b)     Bed rest                                  (2165/2426 cases = 89%)

c)     Dietary changes                     (1496/2226 cases = 67%)

2.               The least effective strategy was:

CBT  (made no difference)   ( 232/ 423 cases = 55%)

          (made things worse)    (  91/  423 cases = 22%)

3.               The most harmful strategy was:

Graded exercises

(made no difference)             ( 235/1467 cases = 16%)

(made things worse)              ( 707/1467 cases = 48%)

It was psychiatrists who could not accept these findings and as a group walked out, refusing to endorse or sign what was already a much ‘toned-down’ final draft report.

Already in November 2000 the ABPI produced a glossy detailed booklet entitled ‘the expert patient’, stressing the importance of patient participation and input in treatment and healing processes.

In September 2001 the DOH produced an even more comprehensive booklet entitled ‘The Expert Patient: A new Approach to Chronic Disease Management for the 21st Century’, the results of investigations carried out by a Task Force in which the present Chief Medical Officer, Professor Liam Donaldson, was closely involved.  The CMO has since stressed this new approach time and again on many occasions.

Surely it is time that psychiatrists took some notice and actually listened to what patients tell them.  I have yet to come across a patient who complains about any treatment which works, whether this is allopathic, psychological methods (like CBT) or exercise regimes (like Graded Exercises).  If it works, no-one will complain; the problem is these approaches very often don’t, and this is the one and only reason why patients are so persistent in their demands for other options and are determined to get to the real causes of their ill health.  No-one has yet found one single answer to these new and difficult diseases, but one thing is certain: psychiatrists have made things worse for many, in more ways than one.