Factsheets and leaflets

Care for Someone with Severe Myalgic Encephalomyelitis 

We are  delighted to announce that  the paperback version of  Care for Someone with Severe ME by Greg Crowhurst is ready and available to purchase  from the Stonebird website at the following link:

http://stonebird.co.uk/Notes/index.html

Greg explains further below:

It  has   also been  published in  eBook format. Also, mindful of how difficult things can be, I have made the whole  book free to read online;  I want everyone to have easy access to it.

There has never been  a more pertinent time to be raising awareness of the reality of Severe ME, witness the unfolding events in Denmark where a young woman with Severe ME  faces the threat of being forcibly removed from her home and consigned to a psychiatric ward. One thinks of the terrible experience of 25% Group members, who have also found themselves locked up in secure wards and of course Sophia Mirza.

To my great concern, here in the UK, I see middle  of the road medical  teams and researchers – who profess to be biomedical, still following a psychosocial interpretation,  still using  the same old fatigue language, still not challenging the establishment, still  compromising ME  away,  still hindering genuine knowledge, still making the person with ME  wrong,  rather than looking to their own inadequacies, their lack of knowledge and disrespect for the true nature and symptoms of ME .

There is  a shocking  willingness  in the medical and research fields to accept that psychiatry has the right to be involved with ME, a complacent willingness to call ME a fatigue condition, a willingness to  blur boundaries that should be crisp and clear and separate, a willingness to accept psychiatric interpretations, a willingness to  call illnesses that are not ME,  “ME” –  and to call ME, “CFS” .

These “compromisers”, high profile in some  cases,  are just as dangerous, in my view,  as the hard line psychiatric lobby; for they are  still busy throwing  away the  truth of ME  for some other prize whether that is financial gain, funding, security, status or just ignorance.

The  word “fatigue” is not appropriate  for ME.

During the course of writing my book three young women with Severe ME, including Emily Collingridge, died. My wife, seriously ill and now greatly deteriorated, does not want to die too, just   because not enough people have the guts to challenge the psychiatric lobby, not enough  professionals have  the integrity to challenge government  policies, attitudes,  wrong health service provision and assumptions and  not enough ME  organizations are really representing people with ME.

The voice of truth is desperately needed, in these dangerous times for people with Severe ME. ME is not fatigue, this book shines a light on the reality of the WHO neurological disease Myalgic Encephalomyelitis.bookcover