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Showing posts from August, 2013

Compromise is not acceptable

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Stonebird statement on the UK CFS/ME Research Collaborative
THE PSYCHOBABBLERS STRUCK AGAIN…
..as they announced a new UK CFS/ME research Collaborative…(to) ..study “functional somatic syndromes and prior mood disorders.”

THE NATIONAL FORUM, SUMMER 2013, NATIONAL CFIDS FOUNDATION

To compromise the truth of ME is to compromise lives. 

It is time  to stand up for Myalgic encephalomelitis as a distinct neurological disease. To cooperate with the new collaborative initiative, to attract research funding sounds seductive and appealing to the unaware - however it is to accept the  research of poorly identified cohorts of patients , including those who do not have ME at all, but have been collected together under the insidious umbrella title of CFS.

CFS standing for Chronic fatigue syndrome, is a complete misrepresentation of our disease and a denial of many of our most serious and disabling physical symptoms.

For too long people have compromised.

For too long have we been misrepresented by those w…

I feel so lonely

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HereIn this momentWith these indescribable sensations
With this unbearable weaknessWith this complete inability to do anythingI feel so separated from everyoneAnd everythingBecause none of me is normalNone of me works like it shouldNone of the ill me is seen in its fullnessBecause it is truly invisibleNothing can make this moment rightNothing can help me feel any betterthan I can bolster in myselfNot enough is being doneTo make this illness go awayAnd not enough is being doneTo make the psychiatrists go awayWhere is their shame?Where is their contrition?Nowhere.Where is the harm?Everywhere.Every moment someone is suffering:Tormented, distressed, in agony, helpless, incapacitatedBy this illnessAll the time it is allowed to be called CFSAll the time it is allowed to be misrepresentedAs deconditioning and wrong thoughtAll the time there is no coherent biomedical response.That

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…