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A Reply to the Department of Health

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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 under…

A Reply from the Department of Health

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April 21 2017 JCPMH Report http://www.jcpmh.info/wp-content/uploads/jcpmh-mus-guide.pdf In response to my recent letter to the Secretary of State, (http://carersfight.blogspot.in/…/an-open-letter-to-secretar…) the Department of Health have clarified that : " This Government accepts the World Health Organization’s classification of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) as a neurological condition of unknown origin and that health and social care professionals should manage it as such. " The issue, of course, is that people with ME do not receive appropriate medical treatment, rather "best practice" dictates psychiatric therapy; CBT and GET for "maladaptive thinking" and behaviour change. The issue, of course, is that the most severely affected are left to cope in unspeakable agony and suffering with no specialist care, support, advice, investigation, cure whatsoever available. Such a dangerous situation. So outrageous ! The issue , of c…

An open letter to the Secretary of State for Health, regarding the JCPMH MUS Report.

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On Feb 9th 2017,the Royal College of Psychiatrists and the Royal College of General Practitioners
 published  "Guidance for Commissioners of services for people with medically unexplained symptoms – practical mental health commissioning" (Joint Commissioning Panel for Mental Health), specifically listing Myalgic Encephalomyelitis as a "Functional Somatic Disorder", in other words a mental disorder.

On Feb 20th, I wrote to the Royal College of Psychiatrists stressing how  Myalgic Encephalomyelitis (ME) is not a mental disorder. It has been recognised by the World Health Organisation since 1969 as an organic neurological disease, classified under ICD code G93.3.

In November 1987 ME was recognised as an organic disease by the Department of Health (Hansard: 27th November 1987:353).  The CMO report of 2002 described ME  as a "genuine illness" which,"imposes a substantial burden on the health of the UK population." On Nov 20 2012 the Countess of Mar…

NICE does not list ME as a Functional Somatic Disorder

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In their  letter to me dated March 2nd,the Joint Commisioning Panel for Mental Health  (JCPMH) claim that their "Guidance for commissioners of services for people with medically unexplained symptoms" which lists Myalgic Encephalomyelitis as a "Functional Somatic Disorder", in other words a mental disorder,  is "in line  with NICE guidelines and with current practice."

That is simply wrong.

I wrote  to NICE on March 13  to clarify whether the JCPMH Report is correct in stating that  ME is a somatoform disorder.  They confirmed (March 15) :

"Thank you for contacting the National Institute for Health and Care Excellence (NICE) regarding our guideline chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management (CG53)

We have not listed ME as a functional somatic disorder in the above guideline and unfortunately I am unable to comment on the report issued by the Joint Commissioning Panel for Mental Health."

It is …

25% Group and Stonebird Response to BACME article on care provision for severe ME.

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Response to BACME  (British Association for ME/CFS) Working Group on Severe CFS/ME  Shared Clinical Practice Document Version 1
When you work with someone who has Severe ME you need to be more sensitive and aware than you can possibly imagine. Harm, even death for some, may follow poor treatment, care and ignorance.
 The frailty of someone with Severe/Very Severe ME cannot be exaggerated nor adequately described. You need to take the greatest of care.

The problem with this BACME document is its underlying psychosocial values and attitudes. If you expect a person to get better, that will be your intention, that will be your goal, that is going to influ-ence all your thoughts and actions in your caring role, especially if you set goals or limit care over time.

The care provided by someone with a biomedical understanding of Severe ME is going to be funda-mentally different, however much the starting point of care might appear to be similar in this docu-ment, to the person who has a psychoso…

Will you speak out ?

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The mislabeling of ME as Functional Somatic Disorder, in other words a mental health issue in the recently published 'Joint Commissioning Panel for Mental Health (JCPMH) Guidance for Commissioners of services for people with medically unexplained symptoms', could not be more serious.

(http://www.jcpmh.info/resource/guidance-commissioners-services-people-medically-unexplained-symptoms/)

Left unchallenged the JCPMH Report is bound to have a damaging impact upon medical understanding and service provision.

I have made a complaint to the Royal College of psychiatrists, raising pertinent facts that show ME is a physical disease, classified by the WHO  as a neurological disease.

In response to my complaint, I  have received a letter  signed by the Co-Chair, Expert Reference Group for JCPMH Guide on Commissioning for MUS, Co-Chair, Expert Reference Group for JCPMH Guide on Commissioning for MUS, Co-Chair, Joint Commissioning Panel for Mental Health Royal College of Psychiatrists and …