Showing posts from January, 2017

The Year of No Compromise

Greg Crowhurst 8th March 2008 (Updated January 2017) When you look closely at what the psychiatric lobby are actually recommending , the tactics they are using and the practices they are advocating, it becomes extremely clear that they do not benefit the severe ME sufferer. The issues though are not always that obvious or easy to grasp ; not given the physical isolation, the severe illness, the brain fog and the other profound levels of disability that people are experiencing with WHO neurological Myalgic Encephalomyelitis. This is a simple summary of the inferred messages underpinning the psychiatric paradigm , currently being heavily promoted in the UK: The   recommendations : do not investigate  ME patients . do not provide  special facilities for ME patients  other than psychiatric clinics . do not offer special training to doctors about the disease . do not offer  appropriate medical care for ME patients .  do not offer  respite care for ME patients . do not

The struggle and the agony.

I don't understand why there is so little outrage about the way CFS has taken over ME. Every day pushes my wife deeper and deeper into an agony so profound it is defies any human capacity to cope, yet cope she must. Extraordinarily, she clings onto hope. But we have to be our own Consultant, our own Medical Specialist, for there is no one else and never will be for someone this severely affected, all the time that "ME" is allowed to have such a broad range of meaning. I don't understand, where is the fire, where is the anger, where is the fight for the TRUTH of Myalgic Encephalomyelitis, anymore ? This video is about the struggle and the agony : One of these days We are going to be heard One of these days All that we fought for is going to be heard I heard the Stonebird sing One of these days You're going to win Oh you ain't no has-been One of these days you're going to win One of these da

Have I wasted my time fighting for “ME” ?

Stonebird Greg Crowhurst January 2017 I never thought, not for a nanosecond, that after more than two decades of struggle, there would be such a thing as advocacy groups strongly pushing for CFS to be reclassified as ME.(Jason 2016). There is so much more than a change of name that is at stake here. You cannot change a label that encompasses a heterogeneous group of people all with different illnesses and conditions and make it mean Myalgic Encephalomyelitis; it is not the same thing at all. Thankfully others are taking a much tougher line, arguing that “ myalgic encephalomyelitis should retain a strict definition as a distinct neurological disease that includes measurable abnormal changes in the brain and central nervous system .” (Jason 2016) But who is listening to them? And how much power and say do they have, at the end of the day? It is a travesty that  “ME” has been taken over by CFS and rendered a useless label with variable meaning. The term “ME” helps no one