Showing posts with label journalism. Show all posts
Showing posts with label journalism. Show all posts

Thursday, 26 January 2012

A Liddle bit of M.E. Awareness would go a long way!

‘Pretend disabled’ really ARE sick.

"My New Year’s resolution for 2012 was to become disabled," snorts the less than credible Mr Rod Liddle in today's Sun "newspaper", as we still generously call it, even after all these years.

Many have been hurt, enraged and angry by the ignorant bandwagon-jumping of the notoriously obnoxious hack. Some have counselled "ignore him he'll go away" tactics. Those of us who walk the sickening tightrope of life with neurological M.E. sadly have learnt this kind of attack won't just evaporate. The constant background drip of anti-M.E. jibes, the jokes from the writers of Benidorm and Ricky Gervais, the biopsychosocial psychobabble of such as Wessely, Freud et al, will not go away.

Tolerating in silence may make me feel adjusted, meek and mild. That's OK for myself, as it's my choice. But on behalf of everyone else who is affected by this disability denying counter-narrative, as a Christian, a writer, a compassionate human being, a citizen of a world where disability is a reality but equality and justice are not, I felt I had to say my piece and not let such unbridled ignorance and malevolence go unchallenged.

This is what I wrote as my complaint to the Press Complaints Commission. A bit more M.E. awareness never does any harm, if it's the right kind, so here it is:

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Please add the clause(s) you believe to have been breached:
Clause 1. Accuracy i) ii) & iii)
Clause 12. Discrimination i)

Liddle's wholly inaccurate, offensive targeting of neurological M.E. (myalgic encephalomyelitis) in this article breaches the Code by inciting disability hate crime and discriminating against a large group of extremely ill patients. Factual journalism is nowhere to be found in his dismissal of M.E. as "nothing too serious" and "one of those newly invented illnesses which make you a bit peaky for decades". Patients have died from M.E. It has been recorded as a cause of death on death certificates e.g. Sophia Mirza.

Had Liddle done the modicum of basic research and not merely been in a ferocious rush to promulgate his vitriolic misinformation aimed at those too ill to retaliate, he might have avoided bringing disgrace on his profession and inciting unwarranted contempt on patients struggling with this lifelong chronic disease (known to be more disabling in its effects at times than AIDS, MS & liver failure).

M.E. has been recognised and classified by the W.H.O. since 1969 and known by other names, in isolation and in large outbreaks for much longer. It is in no way “newly invented”, let alone “fashionable”. Neurological M.E. is so severe and life-changing in its devastation, that not even the most intelligent actor could "pretend" to mimic its measurable effects, including neurological and mitochondrial chemical changes in the body. It might be possible for a scrounger, such as Liddle purports to covet becoming, to feign the vague fatigue symptoms experienced for a few months by some who only experience a limited period of "chronic fatigue," but these people do not have neurological, multi-systemic M.E.

M.E. cannot be reliably diagnosed until a quantifiable, indisputable array of severe symptoms, observable in all systems of the body (of which crushing, toxic fatigue is but a part) has been present for at least 6 months. It is usually, often in a pattern of remitting-relapsing fluctuating severity, frequently bedbound and housebound and limited even on the so-called “better” days, a life sentence for those unfortunate to be so afflicted. After all the medical scrutiny, tests and investigations patients go through, there is no way that those with neurological M.E. could be found "faking" as Liddle, in his onslaught of vituperative, carelessly penned bile so mistakenly fantasises.
 
As for talking about "tax payers" as if they were a breed apart from disabled M.E. Patients, Liddle should do some real journalistic work and discover that the majority of adult neurological M.E. sufferers have been forced, by the severity of their condition, reluctantly to retire or leave well paid jobs and professions of every kind where they paid tax and often continue to do so as the condition takes its devastating toll on them, their families and carers.

Benefits are not chosen as some comfortable "lifestyle choice" but as a lifeline that is far from luxury when compared to the pay, lifestyle, opportunities and hopes they had before being struck down by this merciless disease in the midst of thriving careers. Other M.E. patients are children and young people with not the slightest incentive to see friends, sporty pursuits, carefree days, partying, adventures and dreams head over the diminishing horizon just so they can look forward to a life of excruciating pain, crippling exhaustion and an existence diminished by being forced to rely on "benefits".

More could, and no doubt will be eloquently said by many others about this outrageously substandard piece of gutter press, as Liddle has on this occasion broken the Code of Practice in lamentable, deliberate ways that few responsible citizens would feel it reasonable to ignore or condone. 

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Now I'm going to lie down and recover my equilibrium and "spoons" again.
If I'm going to be even half strong and able enough to attend my WRAG interview next week, I pray I won't be pressed to volunteer for any job half as "pretend" as the one Mr Liddle seems to have carved out for himself in the name of being a journalist.

Thursday, 3 November 2011

Panorama "Britain on the Fiddle": Straining out a gnat and swallowing a camel?

I was so incensed at the biased and inaccurate Panorama "Britain on the Fiddle", aired tonight 8pm BBC1, I sent a letter of complaint to the BBC.

BBC1's Panorama: "Britain on the Fiddle" 8pm 3rd November 2011

I was too sick to complain after John Humphrys' grievously patronising and offensive program on a similar theme last week. I used the few spoons I have left today to speak out. After all, the only thing needed for evil to triumph is for the good to do nothing. I'm not good, but evil mustn't be allowed to thrive unchallenged like this on national TV.


It breaks my heart to read all the despairing, hurting tweets, blogs and sobs from fellow disabled citizens of Great Britain on the social networks tonight.


We still have each other, and knowing others are in similar situations of being falsely branded cheats and fiddlers is something that keeps me strong in dark hours like this. My dander is well and truly up! Me and millions like me, eh?


This is what I said:


To: panorama.reply@bbc.co.uk


Subject: Re : Britain on the Fiddle, 8pm-9pm, BBC1 3rd November 2011

Panorama tonight (“Britain on the Fiddle”) was a travesty of all that I believed the BBC stands for.

Do we pay the extortionate license fee in order to have your so-called researchers peddle the government’s propaganda against the sick and vulnerable?

Does our license fee buy us the privilege of sitting through the drivel honed to incite disability hate crime I saw tonight and last week with John Humphreys’ appalling contribution to the anti-disability jigsaw you and such as the Daily Mail seem set on perpetrating?

I am incensed that such lies go unchallenged on this prime-time programme. I am disgusted that it is left to ordinary viewers such as myself to point out the errors here.

Who convinced the BBC to make another programme about benefit cheats? Did the DWP tip you off to a handful of cases so you could strain out a gnat and swallow a camel? We all know such people exist and agree, of course, they should be dealt with. What has kept them unchecked at liberty till now but slack and self-serving government departments?

However, sickness benefit fraud, according to the DWP stands at 0.5%. It isn’t “on the rise”. Of the £22 million lost by the government to fraud and error, only 4 million is accounted for by such cheats. The remaining £18 million is , as I understand it, lost through the errors and incompetence of the departments administrating benefits themselves. The government overpayments are costing the country more than sickness and disability benefit fraud put together. When can I expect to see your expose on that? Given your obvious bias and spouting of coalition propaganda, I am not holding my breath!


Am I to take it my license fee pays for you to choose to ignore real issues like this, in order to make Mickey Mouse knee-jerk programmes like this, which serve only to fuel unwarranted contempt, indignation and hatred against innocent citizens who have fallen prey to life-crushing disabilities and unemployment through no “lifestyle” choice of their own?


The cases you so gleefully paraded on this disgusting excuse for investigative journalism are, as you wholly failed to emphasise to your viewers, rare and extreme.

In the wake of your “documentary”, which documents nothing but your Corporation’s forelock-tugging to the powers that temporarily be, the 5 million disabled people who fight every day not only against the humiliating odds stacked against them in this weakest-go-to-the-wall society, but increasingly against the misrepresentation of their situation you are currently churning out to your ultimate discredit, are prey to terror they have neither courted nor deserved thanks to your casual cruelty.

I hope you feel no satisfaction in sinking to this level. I trust when one day you or yours are trapped by genuine disability and unable to escape into these fairy tales of Britain en masse “on the Fiddle” (the clue is in your title that this is exaggeration and, frankly, something far short of the truth we once trusted you to broadcast), you will not regret the degree of hatred you have fostered for people just like yourselves.


Disgusting. Shame on you, BBC.

Just received the automated response from Panorama. Sadly, the reply they promise if my email "requires a response" will be too late. The programme is now out there. The damage, distress and grief they have caused are spreading like ripples in a poisoned pool.

I hope they can sleep. I'm not sure I can, insomnia, discomfort or not.
 

Sunday, 28 August 2011

M.E. in the Media: A Little Nut Who Held its Ground (Irony Intended!)



Wessely's "Mind the Gap" article in 'The Spectator' 27th August 2011 with many interesting comments

This was the upsetting, quite devastating article we woke up to yesterday. Just in time to celebrate a peaceful Bank Holiday weekend in the UK. More of Professor Simon justifying his position and earlier high-profile articles in the UK press.

August has been quite a month. It's often called "the silly season", isn't it? The summer news-slump when all sorts of wacky, weird and wonderful stories hit the headlines while the world is on holiday and needs a break from the heavy stuff?

For us who are genuinely sick with M.E.,who don't ever get a holiday from its devastating effects, this proved to be a bouncing bomb of a story, frisking along gaining momentum through August with poisonous and dispiriting ripples spreading out beyond the visible horizon. Some of us were reduced to tears. Positive, witty, resilient souls reduced to sobs of despairing shock. Not again? No more surely? Where will this all end?



On Twitter, on Facebook, and other social internet outlets, M.E. patients kept each others' spirits up and found ways, by humour or by putting together responses to the half-truths being perpetuated here and elsewhere, of seeing a way forward together. I am so thankful for the strength and gracious, clear-sightedness of other M.E. bloggers, Tweeters and like minded friends on the Internet. 


Some of the responses to Wessely's latest oh-so-reasonable, avuncular cant gave me solace. If you click the link above, there is even a measured response from another psychologist who has personally felt the sting of a backlash (Wessely's amorphous "death threats") from activists who themselves haven't got M.E. but use the frustration of M.E. patients abandoned by the medical establishment, as an excuse for unleashing their vitriol. Yet she still sees that Wessely's psychogenic aetiology model for M.E./CFS is essentially flawed from a scientific point of view.

Other comments bear witness to the professor's shortness of memory on treatments he authorised a quarter of a century ago, but in the article distances himself. Treatments to expose the "playacting" of a child with M.E. and the role his concerned parents allegedly played in perpetuating his illness. We are all aware that 'sectioning' of M.E, sufferers still occurs throughout the 'civilised' world.




Many of us have respectfully tweeted journalists jumping on the bandwagon. Pointing out inaccuracies. Pointing out poor logic. Begging for a bit of integrity and balance in these articles. I had no sooner tweeted Max Pemberton about his own deeply insulting and truth-bypassed article in the Telegraph:


@MaxPemberton: 'Many claim that their condition is the result of..' Patients make no claims.They're diagnosed! Shockingly inaccurate #mecfs

than the said article seemed to have been withdrawn. [Update: the article WAS published in the Telegraph on Bank Holiday Monday 29th August 2011]. Others within the M.E. community were also pointing out the factual errors in many of his words.




It was then that I learnt that a link is only good while the newspaper involved has the linked article available! Someone else on Twitter asked if I could point them in the direction of the Pemberton diatribe. I couldn't find it when I clicked my saved link to the Telegraph again! A bit like Orwell's Big Brother in '1984' rewriting history to suit the powers that be and leaving us wondering helplessly if we were just hallucinating. We can't afford, in the current hostile climate, to be tricked into thinking it's us who don't know what we're talking about! It's really NOT all in our minds!





We can be thankful, at least, that the Pemberton hackery stayed in cyberspace and did not go to print. [Update: Sadly, it did - Telegraph 29th August 2011]. For those who blinked and missed it, the wonderful team behind XMRV Global Action was clever enough to transcribe the article, before it was snatched from scrutiny, here:


XMRV Global Action's note of the text of Max Pemberton's article in The Telegraph "Protesters have got it all wrong on ME"

Maybe this isn't the best quote about our need for patient, dogged perseverance in holding out for a turn in the tide of true M.E. Awareness. 'Nut' is an emotive term, if anywhere near the Wesselyan lips! But through this long month of buffetings from the media, it made me smile and be even more determined to go on chipping away towards better awareness and better science for M.E.:


"The greatest oak was once a little nut who held its ground." ~Author Unknown




We must hold our ground. Peacefully. But with the most stubborn, unwavering determination and persistence. Nothing Wessely, or his sycophantic nay-saying echoes, can ever say or write will change the fact that M.E is a neurological, multi-systemic illness, needing much more of an organic scientific cure than a sticking plaster of CBT/GET.

We have truth on our side, and need to pull together with the little sparks of strength we can muster, against all these odds.

Lucretius puts it another way:

'The drops of rain make a hole in the stone not by violence but by oft falling.'

I feel like a drip or a nut this weekend. Don't we all? But the stone is not impenetrable and this little oak's still willing to struggle its way towards the clearing above. 


Links to various other responses to the articles:
 
The big issue: Extremism has no place in the quest to find a cure for ME

Professor Malcolm Hooper's full response to Observer reported in Dancing with the Sandman's blog today

Tuesday, 16 August 2011

The Truth Is Out There!



The Truth Is Out There. The Truth About M.E./CFS/CFIDS.

But some powerful bum steers have hit the tarmac with a bigger bang, since last I wrote.


Did anybody else notice how soon after the news of Dr Myhill's exoneration of all misconduct charges by the General Medical Council, the pernicious nonsense peddled by Prof Simon Wessely hit the papers? Of course you did!


BBC News covers "victim" Wessely


Daily Mail covers "victim" Wessely


The Economist (where will this end???) covers "victim" Wessely


Top News US covers "victim" Wessely


Visit Bulgaria covers "victim" Wessely

Top News New Zealand covers "victim" Wessely 

Followed up by the slack journalism in the Times by Stephanie Marsh on Aug 6th 
Doctor's hate mail is sent by the people he tried to cure 

and the hackery of Rod Liddle on 31st July with his dismissively mocking
Shoot the medical messenger - see if that'll cure you

So that's pretty much worldwide coverage, then. Raising awareness of M.E.? Sadly, for all the wrong, mistaken reasons. How now to explain all this to friends, neighbours and strangers who have taken this new story on board over their cornflakes, I can't begin to know. 

Happily, most of them already know how little this is a state of mind, and those who knew me before I was ill, understand how the physical illness I fought for years finally took its worst toll, thriving on my opposition to lying down under its tyranny!

A few calculated words from a man who knows full well that time will prove him wrong, and has all the painful fight for M.E. research been swept away in a tide of headline-grabbing rhetoric and half-truths?

A drop of misinformation in already muddied waters. The ripples from this one have gone far indeed!

Amazing how, suddenly, all the decades of research on the physical causes and deeper understanding of this crushingly painful, debilitating neurological multi-systemic disease  (that definition's NOT coming from M.E. patients, but from scientists, researchers, doctors and the World Health Organisation who must also be insulted and mystified that Simon Wessely is now a self-proclaimed "leading expert in M.E.' ???) which rarely gets a mention in the media, has been outstripped by an outmoded and, franky, wholly incorrect analysis of the disease!



You know by now, I'm an optimist. My optimism hasn't been so sorely tried in the years since M.E. (not that woolly umbrella that lets the poison rain in, called "CFS") was diagnosed in my case. I was full of life, optimism, joy, hard work, fun, plans. I still am, ready for when M.E. ceases to pull the carpet unexpectedly from under me.

These articles have made me determined, after a period of sober reflection, that there is all the more need for those of us who can, to keep positive and do all we can to go on holding out for the day when the truth is known and the correct treatments and cures will finally come our way. Sadly for those like Sophie Mirza and Lynn Gilderdale, it will come too late.


The Truth is Out There. 

Not just on the X Files, either.

Professor Wessely knows it, and maybe that's why he has used what influence he has with the media and government to rekindle old ideas and theories about M.E. (experts have called it that, incidentally, not those of us who didn't know any name for the disease that snatched our lives and livelihoods away) that distract the eyes of the world from what is right under its nose, with horrifying sensationalism and sleight of hand.


The Truth is Out There.

We have to keep on believing that, and not letting playground bullies kick us when we are furthest down! Sticks and stones may hurt our bones (if not as much as M.E.!) but calling will not hurt us (when we've stopped weeping in disbelief at the lies levelled at derailing real scientific enquiry!)


Much has already been written to point out the glaring errors in these articles. I've been so thankful for them. We all have:


Actual BBC caller suffering from M.E. speaks the truth

Niceguidelines.blogspot.com - one of so many excellent posts 

Letter on MEA Website 


Letters responding to Rod Liddle's article in The Sunday Times


I have pushed myself to the maximun over the last few weeks. Doing a tiny part of what used to be my full-time vocation, now vountarily and with consequences that make me immobile and inarticuate now for ages afterwards. Receiving those visitors who can only get away to see me in the summer. Luckily they understand my limitations!


All in my head? I think we all know it isn't, whatever we read in the papers. Or hear from little green men.