Showing posts from May, 2018


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…


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.

We Say No MORE !!!

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

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

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. …


May 12th International ME Awareness Day
I feel heartbroken. I am trapped,alone, separate, numb, blank, floating in a dark space, with no connection to past or future, no memory, no words, just pain and distress, at the sheer physical discomfort. I feel lost from my past life, lost even from my life within severe ME -the paralysis overwhelming me and shutting me down, year in, year out, so that even my moments of beauty, joy and comfort are dismembered and torn away too. I just feel separate and blank, lost myself too, my joy, my feeling of goodness or kindness, all gone in a gyre of pain that touches every level of my being, and emptied muscles that should have walked and swum and danced and played and been used for so many years, yet instead are lost to stillness and impossibility. Touch, feel, intimacy all lost. My eyes won’t even work to look at you and see you. They stare, they do not register what they see,they go dark, they make words dance about, they swell, they hurt. They can…


You are negated as soon as you step into the world of ME.

Suddenly you find that people don't believe you are ill, that people will deny you have a neurological disease, suddenly you won't receive the same respect you used to have.

Friends and family and professionals will not understand your illness, will actually negate your experience, will blame you for your illness.

You will find little or no help from the medical profession.

You will find your symptoms are not tested or treated.

You will be left struggling to find ways to cope and find a voice to drown out the negation of the world.

Even so, there is a sense, as never before, that the tide is finally turning. Voices From The Shadows, the #Missing Millions Campaign, Unrest, the widespread media coverage that Clare Norton and Sophie Cooklyn are bravely generating, these films, that people's movement, those individual voices bravely speaking out, all affirm how powerful the truth of ME is, once it's heard.

Up again…