Response by Margaret Williams                                                


11th March 2003


Following a posting on FreeMEuk  (Matters for the MRC RAG on “CFS/ME” to consider / 6th March 2003) in which she brought two points to the specific attention of the MRC RAG, the two points being (i) evidence presented by Dr Daniel Clauw at the recent 6th AACFS International Conference that CBT is ineffective when followed up at 6 and 12 months and (ii) the findings of a recent Cochrane review led by Simon Wessely that “counselling” as a means of preventing post-traumatic stress disorder was at best useless and at worst made people worse), Margaret Williams was personally criticised by Ellen Goudsmit. Margaret Williams wishes it to be known that, unsolicited, Ellen Goudsmit apologised, but for the avoidance of doubt, Margaret Williams (who herself did three years academic and clinical psychology before changing clinical direction) has provided the following response to some of the charges levelled, which she hopes others may find useful:


Whilst Ellen Goudsmit maintains that CBT does work for 50% of CFS patients, I do not agree that it works for those with ME, which is what I care about.  Undefined “CFS” is too heterogeneous to be meaningful, hence the ever-louder calls for sub-grouping from almost everywhere except in the UK.  As far as “counselling” goes, I’m sure it’s fine for those with psycho-social problems, but counselling is counselling, whatever it is called 

(CBT or “counselling”) and whoever it is delivered by --- it is essentially the same principle  ie. to change people’s beliefs and the way they think and cope.  Of course I accept that it must be delivered  correctly, whatever it’s called and whoever it’s delivered by, but in my opinion neither CBT nor counselling can work to alleviate whole body cell-membrane-mediated neurologically / immunologically generated symptoms of ME / ICD-CFS.  It can, of course, mitigate palliatively against any consequential co-morbid psychopathology which may exist or develop, but that is not the same thing as pushing it as the ‘evidence-based’ primary management strategy across the board for everyone with a label of “CFS”, however profoundly sick they may be  (as in the MRC RAG on “CFS/ME” draft document of 17th December 2002 re the direction of future research strategy).  And I’m NOT knocking psychological interventions ---  all I’m saying is that they need to be used appropriately.