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
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