Severe ME Day

It has been a beautiful Summer's Day here, my wife, Linda, though has spent it in the dark, behind thick sound proof curtains.  Her hypersensitivity to the environment has reached frightening levels .

The scandal and injustice surrounding ME is a deep pain. We can only pray that maybe Severe Myalgic Encephalomyeltis Understanding & Remembrance Day next week, August 8th makes some kind of impact.

 To that extent I have just launched Stonebird's webpage :

 http://www.stonebird.co.uk/understand/html/index.html

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A letter to Sir Andrew Dillon , Chief Executive, NICE

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Stonebird 27th July 2017
Sir Andrew Dillon, Chief Executive, NICE
Dear Andrew Dillon,
Re : Myalgic Encephalomyelitis
I have cared full time, for 25 years, for my wife who has a diagnosis of Very Severe ME, my Nursing Standard article "Supporting people with severe myalgic encephalomyelitis" is referenced by NICE in the original 2007 guidelines. In 2015 I was third place finalist, BJN, Nurse of the Year, for which I received an award specifically for my work in raising awareness of and advocating for people with Severe ME. I was Secretary of the 25% Severe ME Group charity for many years and represented the Group at the Gibson Parliamentary Inquiry.
In February the Joint Commissioning Panel for Mental Health document published Guidance for Commissioners of services for people with medically unexplained symptoms – practical mental health commissioning, which misinformed Commissioners that Myalgic Encephalomyelitis is a Somatoform, mental health disorder.
The response, in a letter to me…
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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…
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NICE : a Reply Regarding my letter to Sir Andrew Dillon

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Stonebird Greg Crowhurst Aug 30th 2017
On July 27, I wrote to Sir Andrew Dillon re Myalgic Encephalomyelitis. This is NICE’s reply, dated 29th August. 
I have added the  questions I asked and made some brief comments.
Thank you for contacting the National Institute for Health and Care Excellence (NICE) regarding our guideline on chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management (CG53), Sir Andrew Dillon has asked the corporate communications team to respond on his behalf.
I appreciate that this is an important matter for you and I have addressed of your questions in turn below.
In March this year we advised you by email that we were unable to comment on how another organisation interprets our guideline and this is still the case. If the JCPMH have referred to our guideline in a different way then you would need to take this point up with them directly, NICE is unable to get involved.
Comment: Despite my best efforts, letters to the Department o…
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