No Way to Live !

Unable to move, in intolerable increased pain, even dim light too bright to tolerate, tortured by sound.

 No way to live.

 We need Biomedical answers. 

 We need serious Biomedical investigation. 

 We need a new pathway creating for the most severely affected, based on respecting our physical dysfunction and a genuine intention to understand first - then aim to help.

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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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A 10 point nursing model of practice for patients with Myalgic Encephalomyelitis (ME)

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There is an urgent need  to develop an appropriate  model of practice for patients with  Myalgic Encephalomyelitis (ME). 
Crawford, Aitken and McCagh (2008) found that nurses still respond more positively to patients with Multiple Sclerosis and Rheumatoid Arthritis than patients with ME, which they are more likely to wrongly view as a psychological disorder.
Nurses are not being educated in Myalgic Encephalomyelitis, making it difficult for them to recognise the mistreatment of ME and also making it unsafe for patients with ME to be exposed to a hospital/ medical environment.
A 2009 study (Chew-Graham et al ), for example, found little evidence that Nurses are being taught about ME. One person stated that: “ people probably just look at them and think, oh you know he's just tired all the time: lazy...lazy bastards and wasting doctor's time.'”
A study of the literature reveals an alarming lack of awareness of the seriousness of the disease. Without the appropriate understand…
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