By Greg Crowhurst
As another year of agony threatens to grind us into awful nothingness, as I hang dishevelled with bleeding fingertips, digging deep, wrecking my brain, trying to inject, with a breaking heart, a little hope and optimism, I find by accident, a reference by Hooper and Williams, to something I wrote a long time ago :
“In a paper dated 8th March 2008 entitled “The Year of No Compromise” Greg Crowhurst, a health care professional whose wife is one of the most severely affected ME/CFS sufferers in the UK, said the following
“This is a simple summary of the inferred messages underpinning the psychiatric paradigm, currently being heavily promoted in the UK”.
….Crowhurst’s summary exactly captures the situation in the UK:
- 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 disorder
- do not offer appropriate medical care for ME patients
- do not offer respite care for ME patients
- do not offer State benefits for those with ME do not conduct biomedical research into the disorder
- the wreaking of havoc in the lives of ME patients and their families by the arrogant pursuit of a psychiatric construct of the disorder.
- the attempts to subvert the international classification of this disorder from neurological to behavioural
- the propagation of untruths and falsehoods about the disorder
- the building of affiliations with corporate industry
- the insidious infiltration of all the major institutions
- the denigration of those with ME
- the attempt to make "ME" disappear in a sea of chronic fatigue
- the refusal to see or acknowledge the multiplicity of symptoms
- the ignoring and misinterpretation of the biomedical evidence
- the suppression of published findings
- the vested interests
- the arresting and sectioning of protestors
- the silencing of ME patients, through being given a psychiatric label
- the suppression of dissent
- the labelling of ME patients as the "undeserving sick", as malingerers
- the forcible removal of sick children and adults from their homes.
Seven years later things have not changed !
Significantly though last summer Professor Mark Baker, Director of the Centre for Clinical Practice at NICE, stated in July 2014 that the current Guideline for “ME/CFS” does not :
- meet the needs of people with ME - or NICE's needs either.
- address the real issues in ME
- promote innovation
- has had a “disappointing” impact on specialist care and commissioning issues.
..and that “something” is needed to steer patients away from dangerous neglect and towards expert diagnosis and treatment.
Well, that is progress ! However, as I write in the latest 25% Group Christmas Magazine :
"I turn to the lonely wall and I am thinking to myself, when are the campaign groups going to face-up to the fact that whatever we throw at the Psyches, the NICE’s... , they just absorb with a great big belly laugh. Rant and rave all you like on the internet and they agree with you, with a sly twinkle. Your concerns, your outrage, your petitions they will even sign up to, while slapping you on the back, with a dagger in their hand. "
Even so - as Baker's extraordinary admission last year indicates, we ARE making progress. There IS reason for hope.
But we HAVE to discover a new radicalism !! It has been a long, long road. Many of us are beyond worn-out, it is such a struggle surviving.
Could this year be an ME Spring ? Alone among all the Charities that have sold us out, the 25% Group is taking a stand this year, inviting patients to share their experience of ME, so that "we can wake up the powers that be to the reality of patient experience."
Yes, yes !!! Patient experience is EXACTLY what is required, especially in this Election Year in the UK; exposing the reality of what is happening as opposed to the psychiatric rhetoric is a long overdue. Why has this initiative not happened sooner ??
Please support the 25% Group.
Make THIS the year you say "NO MORE, not for a MINUTE more am I going to put up with this " !!!!
Make this the year you make a formal complaint about your dire lack of treatment !!!
Make this the year you ACT !!
Please, please take a stand this year : on behalf of us all.