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Showing posts from September, 2012

Let us say "no more CFS."

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I have always had Severe ME, have  never known a moment since I became ill and collapsed that has been without severe constant pain, paralysis, light and noise sensitivity, pins and needles,  numbness, muscle dysfunction  ,  damaged motor control, gut issues  and a host of complex  sensitivities and other  symptoms.
 I quickly developed shaking spasms and my cognitive function deteriorated massively over almost 2 decades now, so that I can no longer do what I call in/ out transactions.
 Anything requiring information to come in , whether reading or listening, be understood, then  reflected upon or thought about, then acted on in some physical way in some out going action such as writing, speaking , sorting out, dealing with externally, is quite  simply and shockingly beyond my capability.
 I cannot tolerate or comprehend noise or information, I cannot bear visual stimulation requiring focus or cognition.
What is probably most shocking though  is that even though this symptom onslaught ha…

How to separate ME from CFS

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The Hourglass Model
Greg Crowhurst 21st September 2012

You have to be feeling some kind of hope right now, what with that rocket blast, the Lipkin  Report, Mansel  Aylward on the doorstep  apologising, the other day ,  to a group of disability campaigners   - for the biopsychosocial model and now this from the 25% Group and The Young ME Sufferers Trust , in Scotland  :

Patient representatives at the Cross Party Group on ME today delivered an overwhelming vote that ME, as a discrete neurological disease, must be treated separately from other fatiguing conditions.

In the face of a massive diagnostic muddle (the label 'CFS' being a wide term with various different diagnostic criteria) any specialist clinics set up in
Scotland should identify and treat people with ME, and not a spectrum of fatigue states.

The votes cast were as follows:

For ME: 27 votes

For ME-CFS to encompass a range of fatiguing conditions: 5 votes. (.....my emphasis)


At last !

The question must  be asked though  - why wa…

A response to Mansel Aylward's apology

I have just posted this on Black triangle : Before the Coalition came to power , Steve Webb, Liberal Democrat work and pensions spokesman, commented in relation to the Labour Government’s Welfare to Work programme : “The rhetoric sounds great – ‘We’re going to focus on what you can do and not what you can’t do’ – but we all know that what that really means in practice is getting tougher and setting the bar higher.” He added : “What worries me is the idea of a future Tory government going further, faster down this track and already budgeting for millions of savings, saying there’s obviously people who don’t need this money.” How ironic ! With little protest , Labour’s Welfare to Work programme found seriously ill people, people with debilitating conditions and serious disabilities illegible for Employment and Support Allowance (ESA), the benefit that replaced Incapacity Benefit in October 2008. That is because they had been subjected to the notorious Work Capability Assessment (WCA) which …
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It has to be ME - not CFS !!! Greg Crowhurst 16th September 2012
The separation of ME from CFS, so  ending the decades of  injustice and suffering caused by that  label to people with ME and their families, is , in my opinion, the greatest issue facing people with ME right now :  ME and CFS are not equivalent terms. ME is a neurological disease, CFS is a made-up term that encompasses a wide range of conditions. CFS includes Chronic Fatigue, a mental illness, as well as ME, a neurological disease; it is therefore unsafe, unreliable and unrealistic . ME does not exist on a continuum with Chronic Fatigue or CFS any more than Cancer , or Multiple Sclerosis does. ME is not a fatigue illness ,  in the way it is contextualised in CFS; you don't even have to have fatigue to have ME. A service cannot treat WHO-ICD-10-G93.3 ME/PVFS patients while also using the CDC/Fukuda CFS definition, without doing a gross disservice to taxonomic logic . The International Consensus Criteria (ICC)…

No words anymore

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There are no words anymore. We sit in silence, Linda increasingly unable even to bear my presence, so screamingly hypersensitive is she  to noise, light, touch, movement. The red areas indicate raw
 pain :


Noise !

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