Care for Someone with Severe ME, now released in print.

Stonebird is delighted to announce that finally the paperback version of  Care for Someone with Severe ME  is ready and available to purchase  :

There has never been  a more pertinent time to be raising awareness of the reality of Severe ME - witness the unfolding events in Denmark .

In our painful experience, the danger to people's health is growing .

Even here in the UK, where ME is officially recognised as neurological , the truth of the disease  is  being gradually diminished , as experience it,   in a deepening  sea of fatigue- speak.

To our great concern we 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 .

The new danger  to us, is the danger of complacency, :   a shocking  willingness ,in the medical and research fields to accept that psychiatry has the right to be involved with ME, a 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 many cases,  are just as dangerous, in our 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.


  1. Sadly I agree with this entire post. A year I go I saw the tide turning, new hope, new opportunities. Today, it is frightening me what I am seeing. As you say, the compromisers, the complacency. I have never felt so disillusioned ...........

  2. Me is a nasty illness and even worse for the 25% who are severly ill. They are too ill for nursing homes and hospitals. They need dedicated respite services which are quiet and cater for light and sound sensitive individuals with high needs. The ignorance of people who call anything they don't understand "psychological" appalls me. It is very easy to distance ones self from anothers problem, if you can prove or suggest it is a figment of their imagination. It is a sad reflection of our society that many are too busy to care or willing to be educated. They do not want to be confused by the truth as their minds are made up.


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