Now you know where Nowhere is

My wife is not a disinterested observer in this process, despite all her suffering she, as Sam Keen (Fire in the Belly, Platkus 1992, p. 165) puts it, roars with the "thunder and lightning" in her.

Keen , in his extraordinary book, describes those "spiritual warriors alive with moral outrage" who take "risks..and give vent to prophetic anger at secret wars and hidden government."

Never have I known my wife to be so angry as she was, yesterday when there appeared to be a hint that we might go along with the NHS's "compromise" . Her anger , which I cannot possibly describe, was white hot with outrage.

ME sufferers have had enough of being denied, ignored, manipulated through truth and lies out of existence ; this is the time to say "no more !"

When you really suffer, says John O'Donohue (Eternal Echoes, Bantam Press, 1998, p.161), then you know where "Nowhere is". Nowhere is huddled up in the corner, out of sight, out of mind, in screaming, crawling pain for year upon year without ceasing.

And the NHS wants us to "compromise", yet still sign up to a document that has steadfastly ignored patient input, that has removed all mention of conducting proper Tests, of signing up to the Canadian Definition,and offers CBT and GET. In other words a document that gives the green light to a sham of a consultation process that will result in nothing more than exists already, a useless NICE-based , therapy-led service , that offers nothing, not a jot, to the most severely ill.

Leaving us nowhere.

The people we deal with in the NHS`are just decent folk trying to do their job and they seem sincere in their intention to try and help. This goes beyond them .We have asked and asked- who keeps "redacting", removing patient/carer input ? Who is really driving this process ? But we have had no answers to that.

This goes all the way to the vast vested interests that , under the Conservatives and New Labour have been given such free reign to dominate the research agenda and determine health policy, especially in relation to ME.

Truly THERE IS NO OTHER ILLNESS, THAT IS SO DISCRIMINATED AGAINST AS ME.

As Jodi Bassett states so well : "The problem is not a lack of scientific evidence supporting M.E., but that the mountain of evidence which exists is continually ignored by those in positions of power who are abusing that power to further their own vested interests, helped immeasurably by the creation of ‘CFS.’ For 20 years this massive scientific fraud has continued almost unchallenged by the world’s media, human rights groups and governments. It is a worldwide disgrace." http://www.hfme.org/whobenefitsfromcfs.htm

This is what my wife's anger is about ; from what I saw yesterday , it was truly prophetic. Change is coming because just maybe, for the first time, a group of ME patients and carers are going to take a stand and say "No !"

You had to be there to witness the power of that.

Popular posts from this blog

Why ME must be removed from the JCPMH Report : Guidance for Commissioners of Services for People with Medically Unexplained Symptoms

Why the separation of ME from CFS is long overdue

Paralysis, a qualitative study of people with Severe Myalgic Encephalomyelitis