Individual ME recovery stories as experienced by Jo Chambers (Observer, March 28) importantly offer hope and encouragement to other patients diagnosed with ME/CFS that improvement, and perhaps even recovery, may be possible.
It is however necessary to provide a little broader context and balance as there are inherent dangers in extrapolating individual experiences to a wider patient population.
ME is internationally defined as a neuroimmune inflammatory illness, whereas chronic fatigue does not in itself constitute a diagnosis; more a symptom that may be present in a number of often quite different medical conditions.
In 2005, Dr Vance Spence, chairman of ME Research UK, gave an important presentation to an audience of nearly 200 patients and health care professionals at the Coventry & Warwickshire Chamber of Commerce, identifying a number of core issues with regard to diagnosing, researching and ultimately treating patients, bundled rather unhelpfully under a broad spectrum of chronic fatigue syndrome (CFS).
Dr Spence highlighted a lack of diagnostic clarity, pointing out that ‘the terms ME and CFS mean different things to different people’ and that ‘misuse of terminology by the mass media is common’ although this is perhaps understandable as research published in 2011 found that over 40 per cent of patients referred from primary care with CFS were found to have been misdiagnosed.
Other important issues highlighted by Dr Spence were the lack of biomedical research funding and the predominance in the UK of an illness model that frequently ignored international biomedical research although there are some signs from the Medical Research Council that this may finally be being addressed.
It does appear that some presentations of ME/CFS may effectively be self-limiting with recovery occurrinbg spontaneously perhaps after two or three years.
Other patients experience periods of relapses and remission, whilst for some the illness remains chronically unremitting with devastating consequences for the individual and families concerned.
Sadly, despite their own best efforts and supreme motivation, many ME patients (Observer readers may wish to Google Voices from the Shadows) will not be walking anywhere any time soon, let alone running.
Duncan Cox and Tracey Browett
Co-ordinators, Warwickshire Network for ME
This letter refers to a story that appeared in The Coventry Observer on March 28. A slightly different version was run by the Solihull Observer and can be read HERE.