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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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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Paralysis, a qualitative study of people with Severe Myalgic Encephalomyelitis

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Greg and Linda Crowhurst (August 8th 2013).
Synopsis
Paralysis is a symptom that is rarely highlighted in the literature for ME, yet is found amongst the most severely ill ME population and even some of those not so severely affected. My wife has experienced it for almost 2 decades, without adequate exploration, alongside exposure to denial and dismissal, ignorance and neglect as well as harmful treatment.
We wanted to find out if there was anyone else with a similar experience to my wife's or if she was a rare and very severe case. We wanted to highlight the seriousness of this symptom and ask why it is being ignored and down played not only by the medical profession, with its inappropriate focus on fatigue and the psychosocial response, but also by the main charities, none of whom, flag it up as a main symptom.
This qualitative research study indicates that there are significant others experiencing apparently similar paralysis and that my wife is not unique. It begs the question why…
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Why the separation of ME from CFS is long overdue

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Myalgic Encephalomyelitis, a neurological disease with multi-system dysfunction is continuing to disappear from view, lost in a fatigue focus that does not clinically represent the reality of this severely disabling chronic disease.

There should, you would think, be no compromise on identifying and separating Myalgic Encephalomyelitis from other conditions and recognising the need for a full medical service with a biomedical pathway, for people with Myalgic Encephalomyelitis (ME).

This is sadly not the case and that has profound implications for those people who have ME especially the most severely affected, who are so isolated as to be almost invisible to health services, social services and society generally, too ill to engage with them. 
It is unlikely that anyone outside the situation really know what life is like for people with Severe and Very Severe ME, who are house and or bed bound, unable to interact in a normal way and separated from ordinary life by acute environmental hy…
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