House and bedbound does not describe Severe ME.
(Published in : The ME Global Chronicle #6 August 2014
When you look with honest eyes and open heart at the plight of people with Severe ME; the ones who represent most fully what ME is, with their tormented bodies, widespread cognitive dysfunction, crushing muscle dysfunction, untreatable multi-layered pain, shaking spasms, transient paralysis, acute noise sensitivity, light sensitivity, touch, motion and chemical sensitivity, complex gut issues and difficulties swallowing and eating, the pretense that the disease is manageable and treatable psychologically is shocking.
The medical neglect and the isolation of the most ill is a tragedy and a travesty. People with Severe M.E. are not being investigated adequately, not being properly medically treated, not being represented accurately or portrayed fairly.
In order to survive, cope with the profound challenges that living in an increasingly hostile environment creates, patients become more and more isolated from the world, invisible even, left to suffer for decades on end without proper treatment or tests.
The term “house and bed bound” is often used in context of Severe ME, as if that describes severity. “House and bed bound” is a blanket term that:
• does not identify what is going on medically at a physiological level in Severe ME.
• does not describe the severity of symptoms each person experiences individually and differently.
• does not convey the complex multi- system dysfunction people experience.
Neither does “house and bed bound" convey:
• the endemic medical neglect
• the government responses that, against all the evidence, buy into psychological treatment pathways;
• the charities, practitioners, medical establishment, who willingly collude with psychiatry;
• the inadequate, inaccurate portrayal and focus on fatigue;
• the poor identification criteria;
• the lack of medical identity;
• the disinterest of neurology;
• the misunderstanding of M.E. deliberately compromised through immersion in a sea of loosely defined and under-investigated conditions;
• the complete lack of biomedical input and proper medical investigation that people with ME experience, time and again.
Nor does the label stop psychiatry from callously perpetuating the misinterpretation and misrepresentation of ME as a mental health condition.
People who live with Severe ME, sooner or later come to know personally, those who die, directly or indirectly, as a result of this medical neglect. Their numbers, sadly, mount up over the years.
What inspires us about those wonderful people, sadly no longer with us, was their determination to be themselves, despite everything.
What angers us is how badly they were let down by society, government and the medical establishment: the wasted lives, lost too soon.
What grieves us is the unmet global need for much, much better treatment and acknowledgment of the full reality of this devastating physical illness,the need for much better medical support and understanding, for responsive services that actually reflect understanding of the house and bed bound reality.
There is little real hope of adequate or honest provision, all the time the psychiatric lobby entrenches itself further and further into mainstream ideology, misdirecting funding and research, leaving people unsafe, without adequate recognition and little or no power to get things changed.
When you are very severely affected you live on the edge and the others live there with you. You do not know who might be next to die. You do not know if it will be you.
You just keep going and keep going, one moment at a time, hoping to improve for no real reason, for little or nothing is being done.
There are no cohesive, reliable, complete explanations, the medical profession as a whole does not want to know. You hope you will not be harmed; much as you try to avoid mistreatment, inevitably it still finds you.
The longer you live with Severe ME or live with someone who has Severe ME, their health deteriorating into unfathomable levels of suffering, too vast to describe, the more clearly you see the truth.
You see very clearly that :
• People are being medically ignored and fobbed off by the medical establishment.
• Current research does not generally involve people with complex hypersensitivities, too difficult to deal with, excludes the most severely affected, the ones with the full range of symptom experience.
• Medical professionals do not have the first clue how to deal with those who are profoundly noise, light, chemical, touch, movement sensitive and paralysed; they do not know how to communicate safely with people who are harmed if approached or touched wrongly or spoken to loudly or in the wrong way.
• Psychiatry is rapidly increasing in power and expanding its influence.
On Severe ME Understanding and Remembrance Day, August 8th, Severe ME sufferers, desperate to be “seen, heard and recognised” mounted an “ME Cover-Up” Campaign to highlight the whole-scale neglect of M.E. Enormously ill people, at great effort, took and sent in photographs of themselves covered up with a sheet. Some of the slogans they held up were heartbreaking : “Out of sight, out of mind”, “Severe ME, invisible, ignored”, “21 years of agony and no Consultant”, “Living behind the lies”, “Twenty years sick, stop the cover up!”.
Their powerful images can be viewed here : http://stonebird.co.uk/archive/aug8/
Perhaps the most moving picture was the one a fourteen year, old sent-in, wrapped in a sheet. What is the future for the children, we have to ask?
Exceptionally bleak, if things do not change.