Fighting for an honest view of CFS

By psychologist Ellen Goudsmit, who's done a lot of research into CFS:

Prof. White asks us to stop fighting him and focus on fighting CFS but he has a formidable history of making life difficult for patients and any colleagues with different views. Has he suddenly changed his mind or is this a case of ‘spin’?

The sympathetic and reasonable attitude shown by Prof. White on You and Yours and  in his reply on Co-Cure is inconsistent with his misrepresentation of the research and views of both patients and colleagues. His record includes trivialising the illness (e.g. references to hypervigilence making normal symptoms appear worse,) and criticisms of  a lay version of pacing which he is now studying as part of the PACE trial (presumably to prove its flaws). This is inconsistent with the kind of patient-centered, objectivity one expects from a sympathetic physician who cares about this illness. It reflects a more subjective, selective approach. That’s what some of  us are fighting. I certainly have no interest in challenging  a perfectly reasonable individual giving an objective opinion.

The emphasis in his descriptions of the illness are recognisably psychiatric. While we all acknowledge that psychiatric conditions have physical effects (as ‘physical’ diseases can have psychological effects), the subtext in all his recent articles is that CFS is psychiatric/psychosomatic.  Moreover, the treatment advocated assumes a psychiatric/psychosomatic  aetiology. He may be against Cartesian dualism, but his articles show  a distinct fondness for dualistic thinking. Thus any virus infection may be a trigger, but I rarely see references to the 30% of patients with evidence of ongoing infection. This is the subset for whom GET might be unsafe. As for proteins in the CSF (Natelson et al), it’s not a finding one tends to come across in the writings of the CBT school. Perhaps because it might give a more balanced view of the literature, and sew doubts in the minds of readers.  Such evidence shows the complexity of CFS, and that requires a different type of treatment the ones Prof. White advocates.

If Prof. White wants us to stop challenging him, he must show more respect for the views of patients and the work of colleagues who  don’t support the CBT model.  We’re only fighting back to stop people being misled.

Conflict of interest. Prof. White has consistently ignored my work on pacing, preferring to give people the impression that there’s only one version, i.e. the one which is largely based on ideas for a different patient group and which he (rightly) tends to criticise as nonsense.

Ellen M. Goudsmit CPsychol CSci AFBPsS

For information on ME and CFS, see: http://freespace.virgin.net/david.axford/melist.htm