Date sent:      	Mon, 24 Sep 2001 

JAMA Response - Dr Shepherd


DR CHARLES SHEPHERD
MEDICAL DIRECTOR
M E ASSOCIATION 
4 CORRINGHAM ROAD, STANFORD LE HOPE, ESSEX SS17 OAH, UK

____________________________________________________________

TO:  THE EDITOR, JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION
RE:  'CHRONIC FATIGUE SYNDROME - TRIALS AND TRIBULATIONS'


Dear Editor

In his editorial (1) on two systematic reviews of treatment interventions for chronic
fatigue syndrome (CFS), Simon Wessely rightly concludes that many patient advocates
will criticise the way the results are likely to be interpreted and demonstrate no
desire to lobby for increased provision of cognitive behaviour therapy (CBT) and
graded exercise therapy (GET) programmes for these patients.  He is, however, being
disingenuous to infer that this is due to misguided passions over the possible causes
of CFS.

Like most patient support groups, the ME Association provides information on all
treatment options currently under review.  But rather than just base our conclusions
on results from a very limited number of randomised controlled trials, we also take
account of evidence that includes feedback from both patients and their clinicians.

In the case of GET, the results of three large treatment surveys involving (UK)
patients indicate that there is more dissatisfaction here than with any other form of
management intervention.  The largest survey (2), involving 2,338 respondents, found
that out of 1,214 who had tried GET, 34% believed it was helpful, 16% reported no
change, but a disturbing 50% (ie 610) believed GET had made their condition worse. 
The reason for this may well relate to the view that many CFS patients are already
functioning at or near their level of maximal physical performance and that
inappropriate extra activity can easily produce a relapse (3).  In addition, there is
growing evidence that the explanation behind GET - ie that CFS patients are
physically unfit and deconditioned - is not consistent with objective measures of
physiological functioning (4).

With CBT, patient support groups have no problem in acknowledging that formal
programmes aimed at improving the way in which patients cope with practical aspects
of their illness, such as sleep disturbance and activity management, can sometimes be
helpful.  Unfortunately, most CBT is administered in a psychiatric setting where
there is a strong emphasis on the controversial hypothesis that CFS is largely
perpetuated by abnormal illness beliefs and behaviour - an approach which many
patients find unhelpful and unacceptable.  Again, the results of all three treatment
surveys - the largest of which (repondents = 285) found that 67% reported no change;
7% found CBT helpful, and 26% were made worse - are very different to those obtained
in randomised controlled trials.

So long as research evidence and patient experience remain so far apart in the areas
of CBT and GET, the ME Association feels fully justified in maintaining its current
position.


Dr Charles Shepherd


REFERENCES

1  Wessely S.  Chronic fatigue syndrome - trials and tribulations.  JAMA.  2001; 286:

2  Action for ME.  The Severely Affected - A Survey of Members of Action for ME. 
2001.

3  Lapp CW.  Exercise limits in chronic fatigue syndrome.  American Journal of
Medicine. 1997; 103: 83 - 84.

4  Bazelmans E, Bleijenberg G, Van Der Meer JWM, Folgering H.  Is physical
deconditioning a perpetuating factor in chronic fatigue syndrome?  A controlled study
on maximal exercise performance and relations with fatigue, impairment and physical
activity.  Psychological Medicine.  2001; 31: 107 - 114.


NOTE TO EDITOR RE POTENTIAL CONFLICTS OF INTEREST:

Simon Wessely quite rightly declares his involvement with Prisma Health - a
commercial organisation that acts for insurance companies by arranging rehabilitation
programmes for people with CFS that involve CBT and GE.  He does not however refer to
the fact that he is a member of the Advisory Panel to the York Systematic Review -
surely this should have been noted. And was a doctor so closely involved with the
review the correct person to write an editorial that makes a number of very serious
criticisms aimed at those of us who act as patient advocates in what is a very
difficult area of medicine?