M.E. in the media: why let the truth get in the way of a good story?

Myalgic Encephalomyelitis is not a mental disorder.

Let me start with the simple fact. Medical research has shown it. The World Health Organisation has recognised it. Everyone with M.E. knows it to their cost. How much simpler it would be if we could walk away from M.E. after a cosy chat about our "illness beliefs" and a few phased-in press-ups!

No right-thinking M.E. sufferer wants anything but a cure and their former health back. For children and young people who never knew a healthy life before M.E. struck, just the cure and a happy normal future would do.


We do not want psychiatrists harmed or threatened. Of course not! What are people thinking? Like me, none but a handful of (as yet curiously unnamed) desperately sick individuals at the end of their tether, would wish harm on anybody. Let alone issue death threats. This is appalling to us all.

But smokescreen coverage of the "victimisation" of those seeking to turn back the clock to the days when the mistaken insult "Yuppie Flu" reigned in the minds of a largely uninformed public, has pothered up around the illness that has stolen our lives and livelihoods for so long on a daily basis. While this mass media story goes viral, it is in danger of snuffing out bona fide campaigning for scientific medical progress into M.E. treatment and cure. That would be the real tragedy.

M.E. is not a mental disorder.

It bears no resemblance to bi-polar depression, Munchhausen's By Proxy, schizophrenia or any other mental illness. Any more than M.S. was ever really "hysterical paralysis" or Tuberculosis was ever cured by shoving dying men and women out into the sun to do them good in spite of their wrong "illness beliefs"!


M.E. is NOT a mental disorder.


There seems no end of confusion about this fact. Not helped by the recent onslaught of misinformation, half-truths and lies in the media.

Let me repeat in case anybody is still in doubt:

 M.E. is not a mental disorder.

I understand the confusion. There's a whole Tower of Babel being erected in the press with a confusion of voices shouting from their own corners out of vested interest.

Scientific research is costly. More costly than the cheap talking therapies and often hugely damaging regimes of exercise forced on muscles and mitochondria that are made all the more sick by such tactics. Those M.E. patients like myself who have always driven ourselves to our limits however we felt, have already discovered to our cost the dire consequences of such determination to show our bodies "tough love"!


Scientific biomedical research into M.E. is expensive. But it's not a luxury. It is vital.

So far it has shown the truth that M.E. is a physical illness, not some vague conglomeration of imaginary symptoms making sufferers turn from hard-working, articulate, driven, fully-functioning pillars of society into benefit-bludging, lazy hypochondriacs. Who on earth do you think you are labelling? Are your memories so pathetically short? Where were you knockers, disbelievers and haters when we were saving your lives in the operating theatre or baptising your babies, successfully fighting your lawsuits or striding along optimistically helping to change the world where we all paid tax while we could? That was us M.E. sufferers, just like you! We were (and would love to be again!) your co-workers, crisis solvers and your children!

Recent articles in papers like the Sunday Times and Observer, may have misled you. They probably intended to. By doing so they enable the government, DWP and paid psychiatrists to feel justified in forcing some of the sickest and most vulnerable people in our society, with an illness every bit as disabling as M.S. or polio, into work they are too fluctuatingly, severely ill to fulfil without relapse, or into cheap and ineffective forms of treatment, which is actually designed to manage mental health problems, or psychosomatic syndromes yet often causes M.E. patients to crash and burn.

These treatments include the cheap-to-fund non-invasive and unscientific cognitive behavioural therapy (CBT) or graded exercise therapy (GET) aimed at weaning patients off damaging sickness-perpetuating habits and thought patterns. This does not work with physiological, multi-systemic diseases like M.E., M.S., Cancer, Tuberculosis, Polio, Myasthenia Gravis or Diabetes Mellitus. So why is this the only funded "treatment" available for M.E.? Why? How can our mental aberrations make us too dangerous to donate blood?



Contrary to what has been stated in the media, please listen to the words and understand:

Neurological DOES NOT mean neurotic. 


 Physical disease DOES NOT mean psychological disease.

Physiological illness DOES NOT mean psychosomatic illness.


It really is that simple.

M.E. has been classified by the World Health Organisation and M.E. researchers who are not tied to proving a money-saving, non-scientific theory to keep truthful enquiry at bay as follows:

a serious multi-system neuroimmune disorder affecting the central, autonomic and peripheral nervous systems as well as the immune, cardiovascular, respiratory, neuroendocrine, gastrointestinal, musculo-skeletal, visual and reproductive systems. 


Is that clear enough?

Yet again the papers have rushed into a feeding frenzy on the say-so of certain individuals, borrowing each others' tag lines and taking the easy route to a sensational story.

Why let the truth get in the way of a good story?


Why?

Unfortunately it's too late to ask those who have already died of the effects of M.E. like Sophie Mirza, Lynn Gilderdale and others who make up the 3% of M.E. patients for whom it proves fatal with deaths due to tumours, cardiac failure, brain death and liver failure, sudden collapse after overexertion or exercise and the effects of a slowly worsening illness or, horrifyingly in the 21st century, inappropriate medical "care". Around 30% of M.E. cases are progressive and degenerative. More info on these stats: The Hummingbirds' Foundation for M.E.


Why let the truth get in the way of a good story? I think we all know by now why it must not be allowed to.

Let's go on raising awareness of M.E. in whatever peaceful, respectful but dog-with-a-bone determined ways we can, if we can, whenever and however we can.

If you're still in doubt how medical science is still being ignored at the highest level of UK decision-making in favour of the dangerously contrary all-in-the-mind model of M.E., you can read this post in the excellent blog Dancing with the Sandman:


Letters from Malcolm Hooper Emeritus Professor of Medicinal Chemistry University of Sunderland, to Iain Duncan Smith MP DWP and Andrew Lansley MP Sec of State for Health