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Showing posts from August, 2014

Dashed hopes and inappropriate services.

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Stonebird
What I want for Severe ME, yesterday, today and tomorrow...
Linda Crowhurst
I wrote this list of needs about eight years ago. What is devastating about it is that not one of these items has been fulfilled and enteroviral ME seems to have almost completely disappeared from recognition .

 Surely it is time we had accountability and responsibility for the serious medical neglect of some of the most severely ill and isolated people in the country. 
When will the charities achieve any of these goals by seeking and speaking the truth required to get change?
1 Universal respect that ME is a real, physical disease, not a syndrome or a fatigue state, by honouring it's proper name - Myalgic Encephalomyelitis.
How many clinicians, professionals, charities, groups, individuals actually do this?
2 Appropriate full criteria that succinctly and clearly identify the disease.
How many different criteria and poor criteria are being used to supposedly identify people with ME, thereby misdirecting u…

Concerns about Biomedical CFS, not ME Research

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Stonebird
Greg and Linda Crowhurst August 2014
What is happening to "Myalgic Encephalomyelitis ( ME)?
The John Richardson Group clearly states: Enteroviruses “were and remain the cause of Myalgic Encephalomyelitis”..
Unfortunately,  since ME was mislabelled as Chronic Fatigue Syndrome and the medical profession around the world " accepted without critique, the change from WHO G93.3 to CFS." ( John Richardson Group) it has become a basket diagnosis for many different conditions, focusing on a broad fatigue criterion, rather than the true elements of enteroviral ME. Since then it has changed from a serious, life threatening disease, found in epidemic form to a "vague concept encouraged by the State, research funding and designated clinics" (John Richardson Group).
We fear that the disease, as originally defined by Ramsay, is fast becoming an umbrella term, even if the name ME is used, subject to many different interpretations, incorporating a wide range of meaning …

My campaign

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I will campaign in my own way, to get rid of the term "CFS", no matter the practical issues. I see it as the most urgent task facing us.

I was part of the Learning Difficulty/Mental Health , People First/Survivors Speak out movement back in the 80's; this coincided with the closure of the large  mental hospitals and asylums;  I witnessed , at first hand, how very meaningful and extraordinarily powerful  it is  for people to take their power back  - and how much names and labels mean.

When I trained as Nurse, my qualification was "Registered Nurse for People who have a Mental Handicap." Today, not that many years later, "mental handicap" is  just so inappropriate, the correct term to use is " Learning Difficulties".

A while ago, those  same human beings were being classed as "Idiots", "Imbeciles" , "Morons" or "Cretin",terms that were  slowly replaced by the much more "enlightened  "Retarded"…

Homebound Music

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Coming very soon : I am currently building the webpage, music by those who have to stay at home.

The gap between ME and CFS is now at breaking point !!

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Read in the new edition of ME Global Chronicle about how parents are being accused of abuse, read about the new "Karina" case in Denmark, read about Joanne's incredibly serious , horrific "treatment" in Germany, read one woman's account of starving to death, with no medical care and contrast their stories with the cutting-edge clinical research published elsewhere in the magazine, the biomarkers, all the indicators of severe physical dysfunction and ask yourself how have things come to this ?

Why has AfME, for example, over many years giving psychiatry such a prominent voice, instead of sending it and its fanatical death-makers packing ? Witness their upcoming symposium on "Severe ME" for example.

What our national ME Organizations have been getting up to for the last two decades, making themselves rich, bears little or no relationship to the struggle ME patients, especially the most Severely Affected face. How have things got to this ?

We know the a…

House and bedbound does not describe Severe ME.

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Greg & Linda Crowhurst August 2014
(Published in : The ME Global Chronicle #6 August 2014 http://let-me.be/download.php?list.1)
When you look with honest eyes and open heart at the plight of people with Severe ME; the ones who represent most fully what ME is, with their tormented bodies, widespread cognitive dysfunction, crushing muscle dysfunction, untreatable multi-layered pain, shaking spasms, transient paralysis, acute noise sensitivity, light sensitivity, touch, motion and chemical sensitivity, complex gut issues and difficulties swallowing and eating, the pretense that the disease is manageable and treatable psychologically is shocking.
The medical neglect and the isolation of the most ill is a tragedy and a travesty. People with Severe M.E. are not being investigated adequately, not being properly medically treated, not being represented accurately or portrayed fairly.
In order to survive, cope with the profound challenges that living in an increasingly hostile environment c…

Action for ME Symposium on Severe ME : alarm bells !

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I have just been informed that Action for ME are hosting a symposium on Severe ME, : Friday 14  November.

Immediately alarm bells clanged left, right and centre : I was right !!

Two of the speakers have published an article (http://bmjopen.bmj.com/content/4/6/e005083.full) , citing references to "recovery" from "Severe ME" through CBT, GET and PACING.

This is outrageous !!

There is no recovery possible in Severe ME, without investigating and treating the underlying pathology .

Severe ME is the last bastion, in the psyche's increasingly frantic and outrageous attempts, over decades, to bury the disease under CFS.

How much longer are we going to tolerate the blatant misrepresentation of ME, by the very ones who are supposed to be representing our interests ?

What is the word beyond unbearable?

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I float around
In a sea of impossibility Punctuated and defined by pain and paralysis. The world floats by without me. People live in the world. I, however, live life below the starting point for access. There is no word for this space. I call it 'below Maslo'. Where hopes and dreams are just that. They never come to fruition. They are shrouded in impossibility. Every lost moment takes me further from the world. Every holiday missed, every visit denied, every activity put on hold, Every hope of interaction, feeling, connection, stunted and then ripped away By torment and torturing symptoms: The environment a play space for the able Has become a hostile, dangerous, impossible place for me. Very Severe ME: so much more than disability, So much more than most illness experience, Abstract in its unexpected, unpredictable, catastrophic and deteriorative nature. A living nightmare for the most afflicted Never able to feel well in any moment Anywhere within or without you. Always in indescribable agony. Ev…

The shocking truth

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This is what we mean when we say Myalgic Encephalomyelitis :
 it is time to state the shocking truth.

Where have all the ME Doctors gone ?

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The role of the facilitator

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Stonebird

THE ROLE OF THE FACILITATOR

When someone cares for someone with Severe ME/ Very Severe ME they take on the role of facilitator. They are the hands and feet of the person. 
They do things for the person that the person wants doing. In ME the issues are extremely complicated in how to help without causing deterioration and aggravating symptoms, impacting heath.
This is what being a facilitator is all about:
Facts about ME: know all you can about the physical reality of Severe ME - Know them.
Aware of the harm you can inadvertently do - Be alert to this.
Care about every single thing you do - Make sure you get it right for the person.
Immediate - Respond straight away.
Loving - Do everything in a compassionate and loving way.
Ignore your own personal feelings and opinions - You are representing the person.
Take into account all hypersensitivities and post- exertional impact - Everything matters.
Avoid mistakes - You cannot afford to make any when health is at stake.
Think all the time abou…

This is Aug 8 : Severe ME Understanding & Remembrance Day

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,
When I feel I have no strength left, then I will remember and know, that You are my strength. When I feel like I have no one to lean on, then I will remember and know, that I can lean on You. When I feel overwhelmed by the dark realities of ME, then I will remember and know, that I can seek refuge under Your wings. There I shall wait, because I remember and know, that Your light will still shine on me.
With thanks for beautiful words by Nini