There can’t be many who don’t know of Greg, his wife Linda, their Stonebird website, and the excellent guides to caring for people with Severe M.E. that they have published.
Greg is a nurse by profession and was a finalist in the 2015 BMJ Nursing Awards in large part because of the experience and compassion he has shown caring for his wife and educating others about the condition.
If you haven’t read his guides and you are a carer for someone severely affected, or are keen to learn more, they come highly recommended (see below).
Guest blog by Greg Crowhurst.
I am deeply grateful to the ME Association for inviting me to write this guest blog.
It was 2006, the year Twitter was launched. Looking out over the Thames, plucking up the courage to represent people with Severe M.E. in Parliament for the Gibson Inquiry, I sat on a Westminster bench, next to Boris Johnson.
After posting the very first YouTube video on Severe ME, 2006 was the year that, armed with a pen and the burning belief that, “You are precious and your presence matters”, I launched Stonebird to try to convey, however imperfectly, the indescribable horrors of the disease and to campaign for change.
Back then it was Tony Blair who was Prime Minister, now of course it is Boris Johnson. In 2006 I had been caring full-time for my wife, diagnosed as having Severe M.E., for thirteen years. Now it is twenty-six years and her diagnosis is Very Severe M.E.
Sitting on that bench in front of the Thames, I had a box of tissues in a plastic bag, that I would go on to throw about the parliamentary chamber to illustrate the “tissue of lies” under which M.E. was buried.
I also had a bulky file of research I had conducted on behalf of the 25% Severe ME Group, that had uncovered a shocking picture of physically ill Severe M.E. sufferers:
- being labelled as psychiatric patients,
- being treated with contempt by many GP's, doctors and nurses,
- being locked in secure units and shut in AIDS wards,
- being refused food and forced to participate in inappropriate graded exercise and behavioural therapy, designed to convince them there is nothing seriously wrong and that proper physical testing should not be encouraged.
Since then, and despite all our best efforts, despite all the deaths, nothing has happened in my view to demonstrably change the situation for the better.
The impact of these last three decades of attempts to bury the serious disease Myalgic Encephalomyelitis under a sea of unrelated and vague “fatigue conditions” has been catastrophic for patients.
The FINE Trial
2006 happens to also have been the year of the infamous FINE (Fatigue Intervention by Nurses) Trial, aimed at the housebound.
The theoretical model behind the FINE trial was that a patient’s physical symptoms were presumed to be the result not of a pathological disease process but of a “deconditioning” or “dysregulation” caused by sedentary behaviour, accompanied by disrupted sleep cycles and stress and triggered by the “unhelpful’ personal conviction that they suffered from a progressive medical illness.
It was a shocking way to perform a supposedly serious study on the most severely affected.
The preposterous thinking behind FINE was that patients would begin to understand their symptoms and, jointly with the nurse, agree a programme of rehabilitation.
Never mind that M.E. is classified as a neurological disease by the World Health Organisation and causes devastating multi-system dysfunction, or that no treatment had been elicited to aid patient recovery first.
The Medical Research Council committed 1.3 million pounds to the FINE trial which went on to report null results at the 70-week endpoint.
Regardless, the psychiatric lobby still presses on, with ever more audacious attempts to impose its failed “biopsychosocial model” on the most severely affected, insisting there is no pathology underlying the illness.
I dread to think of the harm that will most certainly follow, if this is allowed to continue unchallenged.
The Welfare Reform Act
What an extraordinary period of history this has been.
In 2007 New Labour, who bought into the myth that the sick and disabled can be talked “into believing they can lead normal lives”, introduced its Welfare Reform Act.
This paved the way for the atrocities that are now being committed under Universal Credit, Employment & Support Allowance and Personal Independence Payment.
It is the “treatment”, denial and abuse of people with M.E. that I have always maintained, going back many decades, which has led the way, and provided the framework, for the widespread mislabelling and mistreatment we see today of the sick, the disabled, the unemployed, the vulnerable and of carers like myself; “Malingerers”, “Scroungers” and a “Waste of Space”.
Abandoned, left to get on with it, living in constant fear of misunderstanding, medical abuse and withdrawal of benefits; this summarises the current state of affairs in the UK for Severe M.E. sufferers, whom we honour today with Severe M.E. Understanding and Remembrance Day.
Ignorance
Over the last 26 years I have learned a great deal. I have, for example, learned, at tremendous cost, that it is not just the psychiatric misinterpretation of M.E. that endangers people.
Rather, it is those in the medical profession, whose crass ignorance and refusal to look at underlying causation or to really listen to the patient and their physical experience, that, without doubt, pose an equally pernicious threat to people with M.E.
The harm that so-called world-class clinicians have done to my wife, leaving us to pick up the pieces, is incalculable. Talk about destroying a life!
On the plus side, I have been incredibly blessed and fortunate to learn a lot about myself, who I am, what I stand for, how to follow my values, what it really takes to speak-up for the truth.
I have learned what exceptional skill, what phenomenal awareness and understanding is required to care for someone at this extreme level of illness.
Out of many, many years of practice I have developed a person-centred model of care: the MOMENT approach, which honours the person and their immediate need.
Above all, I have learned that what matters more than anything is to live honestly, act with courage, truth and integrity and be congruent in all you do.
- For much more information on the lived experience of Severe/Very Severe M.E., please visit the Stonebird website.
- For information on the MOMENT Approach, please see “The Care Needs of People with Severe ME”.
Greg is the also author of:
Footnote:
The ME Association greatly appreciates every person with M.E. who comes forward to offer us their stories or to share their experiences. We are always on the look out for more especially from those able to send photos as well.
Talking about Real People with M.E. is arguably one of the best ways we have of raising awareness and it can help to bring us closer together as a community.
If you would like us to consider your story for future press releases, news-media articles, guest blogs on our website, social media posts, or ME Essential magazine; then please contact either: john.siddle@meassociation.org.uk or russell.fleming@meassociation.org.uk
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