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Showing posts from November, 2014

Brutal and Cruel : The Experience of Paralysis in Severe ME

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If you have never had paralysis, you will never understand the horrendous impact, the multiple cloying sensations, the seething disappointment, the utter desolate loss of ability, communication,connection, contact, the brokenness it creates within and without you. Broken ability to move,to speak, to reach out, to do anything at all,no matter how small or seemingly insignificant, even scratch your face or move your finger, blink your eye or swallow. Let alone touch, hold, call out, explain, tolerate, bear physical contact or even presence in the room.

Every noise, already a torment,slices through you, causing internal mayhem, every exposure to light, which hurt indescribably before you were paralysed, burns you inexplicably deep inside your head. Every movement near or past you is like a slap, a push, a confusion, a shake to your whole system. Every exposure to perfume a mind - numbing, nauseating, gut hitting, head banging experience.

The bed, never comfortable to start with, becomes ha…

Dangerous engagement

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It is so dangerous to think you can engage with people who deny or do not understand your physical illness.

Severe ME needs this:

The correct information that ME is a neurological diseases with multi-system dysfunction, not just some fatigue condition you can recover from with CBT and GET.

Emotional support, if possible at all, needs to be provided by people who are acutely aware of the physiological issues of ME and the extreme danger of the harm and deterioration that can be result from interaction.

Well-experienced, medically aware consultants with a genuine overview of neurological ME and its biomedical implications are needed to protect people from harm and investigate the underlying physiology.

This is not happening because it is:



 not being promoted by the charities.is denied by the psychiatric lobby.

21 years of fighting for truth and justice

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There are adventures - and true adventures. True adventures take you on a wondrous journey of discovery, they fill your heart with joy unimaginable and your soul with a belonging, that can endure any pain, challenge, storm, disaster or suffering and rise, triumphant above it, a sparkle in the eye, a twinkle on the lips !
A raised fist, punching the air in victory, a cuddle, a dance, a soft holding of each other : no matter what, we know that we will break a pathway through.
Out of fire, we have forged a sword of truth a buckler of integrity so strong, nothing, no one can break it !

21 years - I never thought it would  be so new. I am younger, more full of awe, more alive than I ever was, that is what true love does I have discovered, it shows how all things are possible.
Much much more, it teaches you how to sit together, contented, in stillness and silence; precious, precious times.
21 years later, it feels like the adventure is just beginning !! I LOVE you Linda xxxxxx

Has Action for ME crossed a line too far ?

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Why would anyone, with Severe ME( ICD 10 93.3 ), trust an organisation to run a Symposium on Severe ME, that has actively supported the inappropriate PACE and FINE Trials, has organised candle-lit vigils for the psychosocial CFS Clinics, has endorsed the NICE Guidelines, despite huge patient and other organisation condemnation, has done nothing, that we are aware of, to promote the clear separation of ME from CFS or mental health CF, nor to protect ME's specific neurological/ enteroviral identity and is currently engaged in active collaboration with the psychiatric lobby regarding research ?


Action for ME, in our opinion, has greatly contributed to the confusion surrounding ME and the cover up of ME, within a well-orchestrated sea of psychosocial fatigue. What then are the chances that it will  focus, in its upcoming event,  upon the pathophysiological basis of Severe ME: the most pressing issue for those with serious, physical, system dysfunction? 

The keynote speaker is Professor …