Dr Charles Shepherd, medical adviser to The ME Association, responds to article in The Independent on Sunday, 14 December 2014.
Having worked in hospital psychiatry, I know that mental illness can be just as horrible as physical illness and that people with mental illness still face far too many barriers when it comes to obtaining the support and management they deserve.
However, as a doctor working in ME/chronic fatigue syndrome, I cannot agree with the way the cause and classification of this complex neuroimmune disease has been presented in this article as a mental illness.
There is now robust evidence of ME/CFS being triggered by a range of infections and perpetuated by significant abnormalities involving key parts of the the brain, the immune system, the endocrine (hormone producing) system, and mitochondria (energy producing organelles) in skeletal muscle. The most recent biomedical model of ME/CFS causation, presented at the ME/CFS Research Collaborative conference this year, involves infection and immune system activation leading to neuroinflammation in specific parts of the brain which control cognition, fatigue, pain, sleep etc.
ME/CFS is therefore included in the World Health Organisation International Classification of Diseases (ICD10 – G93:3) as a neurological disease – a position fully accepted by the Department of Health.
So the proper place for assessment, diagnosis and management of these patients is in hospital-based units run by physicians who understand the complexities of the illness, and who are supported by a multidisciplinary team of health professionals.
NHS referral services also have a duty to provide care and management for those at the severe (25%) end of the ME/CFS spectrum – people who are bedbound, housebound or wheelchair bound – and children/adolescents, where this is one of the commonest causes of long term sickness absence from school.
If people with severe diabetes or multiple sclerosis were being denied hospital based services, or domiciliary (home visiting) services, there would be an outcry.
Yet this is what is happening on a daily basis to people with severe ME, where the availability of specialist referral services is even less than that for mental illness (reference).
Consequently, many of these patients enter a state of therapeutic neglect because their GPs do not have the knowledge or experience to manage their condition. The charity sector is left to pick up the pieces.
The scandal surrounding ME/CFS is far worse than the one involving mental illness.
Reference:
McDermott C et al. What is the current NHS service provision for patients severely affected by chronic fatigue syndrome/myalgic encephalomyelitis? A national scoping exercise. BMJ Open, 2014, Jul 1;4 (6) e005083
http://www.ncbi.nlm.nih.gov/pubmed/24984956
Dr Charles Shepherd
Hon Medical Adviser, ME Association
7 Apollo Office Court
Radclive Road
Gawcott
Buckingham MK184DF
Thankyou Dr Shepherd for composing the above reply, to yet another vile and inaccurate Sunday newspaper article.
It is astonishing to me, that in presenting such a deliberately distorted account in a national newspaper, both Wessely and the Independent on Sunday are not in breach of some kind of ethical or press standards code, by pedalling such lies and manipulations.
In my opinion, Wessely’s selective use of certain findings and calculated exclusion / ignorance of others (principally immunology), amounts to wilful negligence and he should be held to account for it.
It seems to me there is so much ignorance among people who have had no contact with ME/CFS sufferers. I live in Spain and the neurologist in his report said I had Fibromyalgia which by comparison is a NEWER condition. How come the later is accept but not the former?
It’s sad that 30 years on the same discussions are going on and people with severe ME are being left out to die by some. It’s time people accepted the facts and started to take responsibility for harm caused and to help people with ME get the help and support long over due to them. Thankyou Dr Shephard once more for taking your time to further the cause of ME and as a good friend of mine says… If something is published in the papers it means it isn’t good enough for peer reviewed journals so whenever I read yet another bit of journalism I just think ‘ah not good enough for a medical journal hey’.