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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 …

Why ME must be removed from the JCPMH Report : Guidance for Commissioners of Services for People with Medically Unexplained Symptoms

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The Joint Commisioning Panel for Mental Health has recently published "Guidance for commissioners of services for people with medically unexplained symptoms,
specifically listing Myalgic Encephalomyelitis as a "Functional Somatic Disorder".
This is not the first time that an incorrect reclassification has been attempted. In October 2001 an attempt was made to have ME ‘unofficially’ reclassified, as a mental disorder in a U.K adaptation of a WHO publication, the ‘WHO Guide to Mental Health in Primary Care’, developed by the Collaborating Centre of the Institute of Psychiatry, London and included under the classification F48.0 “Unexplained medical symptoms.” 

After a reprimand from the WHO, an erratum was eventually issued, acknowledging that the wrong classification.


For anyone wishing to challenge this report, the following may be of interest.
Background
Myalgic Encephalomyelitis (ME) has been recognised by the World Health Organisation since 1969 as an organic neuro…

A DAY WHEN I COULD HAVE, SHOULD HAVE, WOULD HAVE..... EXCEPT I COULD NOT

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Today I am screaming internally with the weakness, shifting, crushing pain, the throbbing numbness, torture from the simplest noise or movement.Everything feels broken inside me. No path to communicate, to verbalise, to express. No path to comprehension, understanding. No path to memory or information. No way to explain or describe the agonised reality I live in. Every sound hits me. Every noise hurts me. Every unexpected invasion of my space paralyses me. My muscles are dead to feeling but alive to pain. Contact so exquisitely unbearable it is impossible to convey the sensation it engenders or the pain level. This forces me into intolerable, invisible isolation. For even if I am in the same room as you I am not experiencing you or the environment in the same way. Even the sound of your breathing can be an irritation to me because it is assaulting my senses.The I that is me, is trapped deep within me, suppressed and compressed into smaller and darker spaces as eyes stare, vision is lo…

MENTAL CAPACITY ACT 2005, A DECADE ON Conference

The potential for deprivation of liberty under the Mental Capacity Act is worrying, especially for people with Severe ME. We are all aware of how Sophia Mirza was sectioned under the Mental Health Act and the terrible consequences.Our hearts go out to Karina Hansen in Denmark, for all she has endured. The Edith Ellen Foundation are organizing a Conference :
MENTAL CAPACITY ACT 2005, A DECADE ON , for families in Norfolk.
https://www.eventbrite.co.uk/e/the-mental-capacity-act-a-decade-on-whats-wrong-and-whats-right-tickets-30162256120