Monday, 22 August 2011

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

4 comments:

  1. Great post! With 250,000 in the UK, and over a million in the US, what are the odds that a small percentage just might have had trouble with anger BEFORE they got sick, and in desperation it's he only language they speak.

    But if there were any real death threats, just why haven't these people gone to the police? "You'll get yours" [one of the messages that was supposed to be a threat] is a colloquialism suggesting the hope that there's balance in the universe - that what goes around comes around. That's all. Why should that be an excuse to malign so many sick people?

    One small correction: before they discovered the cause of tuberculosis, they attributed it to dissolute living (in all the classic Camille stories, the hooker gets it but her boyfriends don't ...)

    But over one hundred years ago, when L.A. was not yet Hollywood, a group of Jewish philanthropists - appalled by the sight of people ding in the streets - created a hospital called City of Hope way out (then) in the desert. They took the dying there to make their last days more comfortable, no matter how poor. Something odd happened. When they were brought out to rest in clean beds in the dry desert air, many got better. Without medication.

    I tell this story because I think one of the most evil practices to come out of the Wesselyite school was an article he wrote about "bed rest" being harmful. It was based upon studies of people TOTALLY confined to bed - not, say, someone wh can get up and make it to the loo with a little help. Jet getting vertical twice a day dispels the harmful effects of total bed rest (as the research he misrepresented showed). That did change hospital and rest home practices - that's why they make you stand a couple of times in the 24 hours post surgery, and they also try to get nursing home patients out of bed for a brief spell if possible.

    But it was NEVER intended as a recipe to suggest that seriously ill people be forced to exercise!

    Thanks for writing this!

    I wrote one over acweek ago thar is clearly (unfortunately) still a propos -

    slightlyalive.blogspot.com

    Mary

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  2. Fantastic entry, thank you. I've been seeking something to explain to my parents that M.E. is not a mental condition; thank you for writing that article for me .. it's perfect!

    Are you aware that medical assessors work for Atos healthcare, when assessing people who suffer with CFS / M.E. are given the choice of deciding whether they are assessing a psychological or physical condition? In other words they're not told what they're assessing. I also understand that neurological conditions are supposed to be assessed by doctors; most people with M.E. seem to be assessed by nurses or physiotherapists. (My little rant over).

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  3. Excellent. Well written and well researched.

    I have just yesterday been given a diagnosis of ME, well CFS but she meant the same thing, after well in excess of 8 years of feeling so ill that there are days I wonder why I bother struggling on.

    Strangely, my friends/family have been congratulating me on finally getting it confirmed that I am suffering from a chronic long term debilitating and sometimes fatal condition, simply because finally my GP Practice stopped telling me 'I'm sure to you it's very real' and actually admitted it was real.

    I consider myself lucky to finally get a diagnosis but not so lucky that it happened just in time to be lumped in with a bunch of lunatic activists more dangerous than animal rights activists! If these allegations are true, why are we not seeing any prosecutions for them?

    From the constant full on berating of sick people and the assertion that his is the only opinion worth listening to Professor Wessely, has shown the world that in fact the only one suffering from a mental illness here is him. I believe it's called Megalomania!

    megalomania [ˌmɛgələʊˈmeɪnɪə]
    n
    1. (Psychology) a mental illness characterized by delusions of grandeur, power, wealth, etc.
    2. Informal a lust or craving for power
    megalomaniac adj & n
    megalomaniacal [ˌmɛgələʊməˈnaɪəkəl] adj

    Collins English Dictionary – Complete and Unabridged © HarperCollins Publishers 1991, 1994, 1998, 2000, 2003

    We in the ME community have known this for years, and one day the world at large will know it too.

    One day SW will be called to account for the harm he has done thousands of patients, maybe not in this realm but in the one beyond, and NO that is not a threat, veiled or otherwise, but an observation on Karma.

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