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A RESPONSE TO BRIEFING FOR ‘MYALGIC ENCEPHALOMYELITIS: TREATMENT AND RESEARCH’ WESTMINSTER HALL, JUNE 21ST 2018

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Stonebird 
Although very good there are some important omissions in this Briefing Document that we think would consolidate it further: 1. Of particular importance to people with Severe ME is to mention: a.The failure of the FINE Trial
b. The inappropriate current NICE recommendation for Graded Activity Management for the severely affected (elements of CBT & GET) We feel the FINE trial failure is key to protecting people with Severe ME. Although PACE is constantly flagged up, FINE unfortunately is rarely mentioned, yet it is proof that the psychosocial approach does not work for people with Severe ME. 2. We are greatly concerned about the danger of increasing what is on offer right here, right now, without a corresponding, fundamental sea-change of attitude within the NHS. There is a huge need in this document to stress BOTH the creation of a new and separate biomedical pathway alongside and an overt break with the psychosocial Fatigue clinic ethos. It is not enough just to ask for …

This is Severe ME

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My new book is about how to care for someone this ill. Notice how the word "Fatigue" does not occur in this devastating list of symptoms. https://www.youtube.com/watch?v=bCU5TI_m3K4 "CARING FOR ME", out very soon.

THE STONEBIRD REVISED DEFINITION OF SEVERE ME:

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Severe ME is a hellish experience that you live and endure without treatment, cure or respect.  Severe ME is not knowing how to cope from minute to minute, moment to moment.
Severe ME is being tormented by people doing ordinary things.
Severe ME is brutal and cruel paralysis.
Severe ME is being totally ill, all the time.
Severe ME is being unable to read.
Severe ME is being unable to hold anything.
Severe ME is falling over regularly.
Severe ME is your mind not working.
Severe ME is being unable to speak on the phone.
Severe ME is being unable to tolerate two-way conversation or anyone in the room at all.
Severe ME is finding that going to bed makes you feel even more ill.
Severe ME is discovering that there is no possibility of rest, ever.
Severe ME is being unable to see anybody because they make you more ill, because you are so hypersensitive.
Severe ME is not knowing what to eat that won't hurt you.
Severe ME is being neglected by the Health Service.
Severe ME is having to regularly have to…

QUESTIONS THAT MUST BE ANSWERED

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There was a very important Scoping meeting at NICE on Friday, unfortunately I was unable to attend. We have not yet seen any feedback from that meeting. The 25% Group and Stonebird has drafted this response. These are our joint concerns, which we hope will be fully addressed.
http://stonebird.co.uk/SCOPE/scope.pdf

We Say No MORE !!!

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We Say No MORE to psychiatric abuse and misinterpretation. We Say No MORE to ME and CFS being equated as the same.
We Say No MORE to the Oxford Definition and Fukuda definition being used to identify fatigue patients as having ME.
We Say No MORE to the mislabelling of ME as Opathy, CF, CFS/ME or even ME/CFS.
We Say No MORE to the psychosocial pathway for ME.
We Say No MORE to generalised fatigue being described as the primary symptom for ME.
We Say No MORE to misrepresentation.
We Say No MORE to misinterpretation.
We Say No MORE to the wrong education of practitioners.
We Say No MORE to ignorance.
We Say No MORE to the psychiatric domination of our biomedical, neurological, physical disease..
We Say No MORE to the denial of its many and complex symptoms.
We Say No MORE to not listening to us.
We Say No MORE to preset psychiatric agendas.
We Say No MORE to biopsychosocial misdirection.
We Say No MORE to the twisting of the truth about ME.
We Say No MORE to media bias.
We Say No MORE to the popular cul…

It's Just a Fairy Story

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At all times, it is worth bearing in mind that there is not a shred of proof for anything that the Psychiatric Lobby proclaims in relation to ME.  It's all a made-up fantasy, based on nothing more than "because I say so", a fairy story that has wreaked unimaginable havoc and suffering. Regarding the NICE Guideline, there will be no change until the psychiatric lobby are completely expelled from their profoundly destructive involvement in Myalgic Encephalomyelitis.

Fundamentally Flawed

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Earlier this year, the 25% Severe ME Group and Stonebird wrote a joint letter to Professor Mark Baker at NICE, its purpose was:
(1) To express concern that the current Clinical Guideline (CG53) is unsafe and requires a health warning. (2) To ensure that any replacement guideline facilitates an approach to care delivery, management and treatment of M.E. patients that is relevant and safe. We also asked for an assurance that the questions for guideline development and the conduct of the guideline development process will ensure that M.E. is not confused with any other disorder. NICE replied on May 4th : 1. In regard to a “Health Warning” : They stated that they are aware that the "existing recommendations are a matter of concern to some patients and groups", that over the next 3 months they will be recruiting the Guideline Development Committee (GDC) who will be asked to "advise on the representations we have received about the existing guidance on treatments." 2. …