Includes comments from 25% members on CBT, GET and the effect of the ‘psychiatric’ approach to M.E.

 "This will be revealed as one of the biggest medical scandals in history" declared a severe ME sufferer. This Report, based on an email survey of sixty- four severely ill, classical, Ramsay-defined ME/CFS sufferers, with a "multiplicity of symptoms" including, muscle phenomena, circulatory impairment and cerebral dysfunction (Ramsay 1988), was conducted at short notice in December 2005 especially for the Parliamentary Inquiry, by the 25% Severe ME Group.

"It is bad having severe ME but not as bad as being treated as a time wasting malingerer by the medical profession and the Department of Works and Pensions", remarked one respondent.

A respondent describes how "This illness makes life hard enough as it is. It is so much worse that, whilst there is the ability to investigate this illness, that opportunity is being deliberately ignored. The choice the medical profession is making to treat a physical illness with psycho-nonsense is never going to cure anybody."

*O*  ME Awareness: Check out the facts Greg & Linda Crowhurst April 20th 2008

You simply cannot sit safely on the fence believing that you are being reasonable. There is no balance to be struck between psycho-corporatism and a true biomedical approach. People are dying right now from this illness.

Martin Luther King, writing from his Birmingham prison cell, in the midst of an equally impossible struggle commented that "I have been gravely disappointed with the white moderate.

I have almost reached the regrettable conclusion that the Negro's great stumbling block in his stride towards freedom is not the White Citizen's Councilor or the Ku Klux Klanner, but the white moderate who is more devoted to "order" than to justice, who prefers a negative peace which is the absence of tension to a positive peace which is the presence of justice, who constantly says, "I agree with you in the goal you seek but I cannot agree with your methods of direct action"; who paternalistically believes he can set the timetable for another man's freedom; who lives by a mythical concept of time and who constantly advises the Negro to wait for a more "convenient season".

Shallow understanding from people of good will is more frustrating than absolute misunderstanding from people of ill will. Lukewarm acceptance is more bewildering than outright rejection."

(Why We can't Wait, Letter from a Birmingham Jail, Harper & Row 1963)

The greatest threat to people with ME right now, comes not just from the psycho-corporate lobby; they are so easily exposed. It comes from the moderates, the lukewarmers, the pragmatists, the compromisers right at the centre; who cannot see the damage they are doing by negotiating the truth away.

Beware.

Be a trouble maker by Greg Crowhurst

We have to get in there and take on the PCT’s and the SHA’s.

It means day-to-day dedication to the task. It means incredible courage and determination and above all a complete refusal to compromise on the truth that ME is a physical, neurological disease.

The corporation’s grip on the State is growing ever more powerful. Most citizen’s movements, says George Monbiot (Captive State, Pan 2000), are weak and to take on the corporations means also confronting "the states that have succumbed to their domination" This can only be challenged, says Monbiot, by "troublemaking – the sole guarantor of liberty".

As freed slave and anti-slavery campaigner, Frederick Douglas, wrote so powerfully in 1857 : "Those who profess to favour freedom and yet depreciate agitation, are men who want crops without plowing up the ground. They want rain without thunder and lightning…Power concedes nothing without a demand. It never did and it never will".

A victory Greg Crowhurst Nov 7 2007

14 years of living with severe ME ;  poverty, a painful, paralysed struggle, every single moment. It was our wedding anniversary yesterday.

What a particularly exquisite joy it was then to  witness   the BBC's Marl Daley, famous in the UK for his expose of institutional racism in the  Police force,  launch into a devastating critique of UNUM, on the news at 10 last night.

UNUM 's extraordinary , growing,  life-destroying influence over ME sufferer's lives has been the bane of our life, for well over a decade.

This Desert :ME under New Labour and Unum. Greg Crowhurst Oct 10th  2007

I fear things are getting much worse for people with ME in the UK. This article tries to show how.

*O* The reality of living with severe Myalgic Encephalomyelitis 2 September 2007 Linda A Crowhurst, Severe ME sufferer Unable to work for 16 years

The recently published NICE guidelines (Aug 22) on "CFS/ME"are shameful, they ,offer nothing to true ME sufferers.

ME; it is waking up in intense unbearable unbelievable pain for 14 years and knowing it's going to probably be the same forever not because it has to be like that but because it is being manipulated like that.

Having severe ME is unimaginable ; the experience is so different , intense and unremitting than anything I have ever experienced before.

Why do I have to accept the denial of the WHO categorising of my neurological disease in the NICE guidelines and the promotion of a biopsychosocial psychiatrically motivated approach to my disease, when it is not a mental health illness?

Why do I have to accept a complete lack of biomedical clinics and a derth of biomedical clinicians in dealing with my disease?

Why is there no government backing for physical research? Why are People who have vested interests in insurance companies allowed to be advisors to DWP regarding guidance in my illness?

How can the psychiatrists be allowed to define inaccurately my disease with too few symptoms and promote a vague symptom of fatigue that is not the primary dysfunction in ME? How can the psychiatric lobby get away with changing the name to CFS to ensure this wrong focus? How can the neurological nature of this illness be dismissed and people who have neurological symptoms be denied a proper service because of them? How can inappropriate therapeutic techniques be promoted by NICE when they are not wanted by people with ME as they make them more ill and disabled potentially if not actually?

Why is the ME community so divided when the issues are so clear?

People with neurological Encephalomyelitis are physically ill.

They need biomedical research and new biomedical treatments developing. They need physical research to understand the disease and develop a true identification process. They need accurate diagnostic criteria, accurate physical diagnosis and prognosis.

We need to stand up for the truth of our disease.

We need to speak out the truth of this devastating physical illness and we need to be strong together.

We need to demand that the focus on fatigue be stopped and stopped now.

Videos by Linda and Greg Crowhurst: see Greg Crowhurst's video diary

See also: www.metrainingco.org.uk