Positive Health Online

Greg Crowhurst, author, activist, advocate and nurse, and his wife, Linda, who suffers from very severe ME, have together produced a verbally and visually compelling account of the multisystem, disabling, neuroimmune disease, myalgic encephalitis (ME).

Their aim is to

• Portray accurately the nature of severe ME;
• Describe the nature and history of psychiatric control over medical and media perception of this disease, and the consequent imposition of damaging ‘treatments’ on patients;
• Insist that this disease always be referred to as ‘myalgic encephalomyelitis’ (ME), explaining the damaging consequences from the adoption of the term ‘chronic fatigue syndrome (CFS) with its intentional conflation of ME with other fatiguing conditions and psychiatric disorders;
• Set out what patients need.

The introduction spells out the suffering and neglect of patients with ME.  Chapter One is an account of the psychiatric doctrine which, despite lack of any evidence or coherent explanation, is the one that our public and medical culture currently accept.  Chapter Two, ‘Get Back’ is a plea for us to return to the medical model, advice, and research evidence which held sway from the 1932 Los Angeles Epidemic, the 1955 Royal Free Epidemic, and the others that were studied up to 1970, when McEvedy and Beard, on the basis of a few hours looking at 15-year-old hospital notes, labelled ME ‘mass hysteria’.  This thesis was published in TIME Magazine, and was enthusiastically accepted, worldwide.

Chapter Three: The Whole of the Moon is a powerful statement of the resulting situation, in which patients now can be blamed for their continuing disability, while continuing to suffer in the absence of any proper medical diagnosis, research, treatment and care.  It is an account of what patients need, and what remains unavailable.

Chapter Four:  The Walls of Jericho, is a detailed account of the ongoing struggle between the medical model and the psychiatric model, as each advance in medicine is undermined by the psychiatric group, and each advance in political recognition is immediately invalidated and ignored because of the power of the psychiatric lobby.

In 1987, it was recognized as a physical disease.  In 1988, the ME Sufferers Bill passed in Parliament, but then nothing was done. 

Greg himself conducted two Severe ME Surveys, one local and one national, under the auspices of the 25% Group.  (This group represents the 25% of ME sufferers who are housebound or bedridden.).   The purpose of the surveys was to provide data to present to the Gibson Inquiry.  A striking 82% of those who had undergone Graded Exercise Therapy reported that their illness had only been mild or moderate until cooperating in this programme, after which they had become severely and apparently permanently incapacitated.

The conclusion reached at the Gibson Inquiry was that Parliament must undertake further investigation concerning ME, but the influence of the psychiatric lobby ensured that this never took place.

This year, it took a petition signed by over 15,000 patients, doctors and researchers to persuade NICE that the current guidelines must be reviewed.  Even then it seems likely that the only ‘experts’ who will be consulted will be psychiatrists, that, as in the previous review, all medical evidence will be dismissed as ‘only small laboratory studies’, and that CBT and GET (possibly renamed) will continue to be recommended. 

In the meantime, this disease, and related conditions, is being subsumed under the newly created heading: medically unexplained symptoms’, and funding is being sought from the ‘Five Year Forward’ plan for mental health services.  They don’t give up.

The Wall of Jericho is still standing.  However, on 8 January, The Independent published a ‘long read’, which was the first article in any UK mainstream media that was factual, accurate, and not within the shadow of the Science Media Centre.  Lest we rejoice too quickly, on the same day a dispassionate, well-argued, sensible letter written by a severe ME sufferer who realistically saw no prospect of relief, no prospect other than continued and increasing suffering ahead...a woman who despite more than ten years of excruciating, unremitting pain, had contributed continuously to our campaign for medical research... was posted on social media:  her thoughtful farewell.

Strait-Jacketed by Empty Air gives us an accessible, accurate, thoroughly referenced account of this disease....get a copy, give a copy to your family, your doctor, your pharmacist, to anyone who asks you how you are, or why you are in a wheelchair...to anyone who wants to know...and especially, to those who don’t want to know. 

They need to know, we need them to know...that impervious wall that exists between us and the respect, research and support we need will only be breached when we make sure that they know.

Greg gives us this beautiful tool...let’s pick it up and use it.

Further Information

Free ebook available to Download at http://stonebird.co.uk/emptyair/index.html  http://stonebird.co.uk/emptyair/sj.pdf

Further Information and publications at www.stonebird.co.uk /