The recent acquittal of Kay Gilderdale, who had been charged with the attempted murder of her 31 year old daughter Lynn, has led to blanket press coverage. Yet Alastair Santhouse, consultant at The South London and Maudsley NHS Foundation Trust and colleagues from Institute of Psychiatry, King's College London, argue that the media has largely portrayed the condition as a progressive, paralysing, and commonly fatal illness, and little has been said about the uncertainties and controversies that this diagnosis has always attracted.
While not commenting on this specific case, the authors point out that severe presentations of chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) such as that of Lynn Gilderdale are unusual, and that, if a diagnosis of CFS/ME is made, data clearly show that mortality is not increased.
The greatest risk to life is likely to be suicide, they explain. And this is often linked to depression that can be effectively treated.
Treatments such as cognitive behavioural therapy and graded exercise therapy have also been shown to work in CFS/ME and are recommended by the National Institute for Health and Clinical Excellence (NICE). In patients with severe CFS/ME, such programmes may be prolonged, but they can be the trigger for improvements and sometimes dramatic recovery, add the authors.
In contrast, the alternative to treatment is often no treatment, and this can have a disastrous effect on the patient, who may feel that the medical profession has given up on them as a hopeless case, they warn.
Undoubtedly current treatments could be improved, recovery may not be complete in many cases, and access to services for those too disabled to attend hospital clinics needs to be improved, they write. Furthermore, doctors are often uncertain about what they are dealing with, and perhaps inevitably a breakdown of trust between doctors and the patients and their families often occurs.
But they believe that the medical profession must continue to go with the evidence in choosing treatments, in what can be a fraught clinical situation. "We owe it to our patients and to our professionalism to do what we can to help those with this potentially treatable condition because, notwithstanding the difficulties, this is our primary duty," they conclude.