A Reply to the Department of Health

Joint Commissioning Panel for Mental Health, MUS Reporthttp://www.jcpmh.info/wp-content/uploads/jcpmh-mus-guide.pdf

This is my reply to the Department of Health, many thanks for all your comments, which were extremely helpful in formulating my response. (Special thanks to Jerrold Spinhirne.)
Thank you for your email dated April 20th. Even though you have stated that the Government recognises Myalgic Encephalomyelitis as a Neurological Disease, patients like my wife are left for decades to suffer, in agony, with no appropriate medical service, no clinical expertise to advise, no investigation, no cure and little hope.
The health system does not accommodate or understand their complex needs.
Patients with the most severe forms of this illness suffer decades without proper or appropriate input or medical recognition.
Rather than identifying the underlying physical cause of illness, discovering the specific underlying physiological malfunctions and treating them biomedically, the focus is on fatigue and an inappropriate, indeed often harmful, psychosocial response.
In your response you use the term “CFS/ME”, however there is no such WHO Classification as “CFS/ME”. ME is a neurological disease with multi-system dysfunction. CFS is a made -up construct of heterogeneous nature.
The ill-defined hybrid condition "CFS/ME" has never been entered in the ICD and is not consistent with WHO ICD rules. No one is served by having the conglomerate made up term, “CFS/ME”, that does not accurately diagnose their disease.
I am not certain why you advised me to take up the issue with NICE’s Chief Executive, Andrew Dillon as I have already clarified with NICE that they do not list ME as a Somatoform Disorder.
My concern is that the Royal College of Psychiatry and the Royal College of General Practitioners, have specifically informed Commissioners, in contradiction of NICE and the Government ,through the JCPMH, that Myalgic Encephalomyelitis is a mental disorder, while claiming, quite wrongly, that their stance is in line with NICE guidelines.
Having spent the last two decades fighting for a biomedical service for people with ME, which will support and effectively meet the needs of the most severely affected, I am extremely concerned, as I stressed in my letter to you, about the impact of the JCPMH’s Report on service provision.
This is not about the NICE Guideline, it is about holding the Royal Colleges to account for the misinformation they have supplied to Health Commissioners.
It is my understanding that the Royal Colleges are accountable to the Secretary of State. Please can you confirm this ?
If not, can you tell me who they are accountable to ?
How can the Royal Colleges be made to acknowledge and retract the incorrect information they have provided to Commissioners and the public, immediately, in order to protect people with ME, from being even more mislabelled, misinterpreted and mistreated ?
Specifically, please can you tell how I can make a formal complaint that will effectively investigate and address the serious issue that I have raised ?
The Royal Colleges must surely be held accountable for their grave misrepresentation of the physical disease Myalgic Encephalomyelitis as a mental health disorder?
Many thanks
Greg Crowhurst


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