Hoping to draw a line under the hyperbole and bias in the media that have caused so much stress and despair to people with my illness, this last four weeks. We've had the threats of 'suicide bomber' patients ramped up to such an extent that if researchers into ME weren't actually scared off before - a fact which has been ludicrously and harmfully exaggerated - they sure as hell will be now.
Thanks, Simon.
And any letters of reply from our point of view or our charities' - ie people with ME, who live with it, who know it, who research it - have been so brutally edited, we've been lucky to get an adjectival phrase published.
'The Threats' has been a highly entertaining, unnerving mini-series, broadcast over a month:
First, we had Nigel in BMJ.
Then Tom on the BBC, who was so excited he sounded like he was in a spoof documentary.
Then Esther on Radio Five.
Then a panoply of small scale reports.
Then Rod; then David; then Stefanie with Simon himself in the Times.
Then Robin in the Observer.
Then a lovely cartoon in THES (removed).
Then Simon in the Spectator.
Then Max in the Telegraph, unplugged on Friday (then removed, remixed by Monday).
Then Robin on the Guardian Science Weekly Podcast in case we hadn't got the gist in the Observer.
Then Simon repeating himself on the Spectator blog, Coffee House.
So, I think we've got the message now, loud and clear - Simon and his followers will do anything to prevent biomedical research into ME, they desperately want to keep it all to themselves - with their loveable, eccentric and conflating notions of 'false illness beliefs' and 'chronic fatigue syndrome'. I return to an excellent quote regarding this whole stramash, from a journalist in 2007:
“I’m sure there is a lot of psychiatric literature on how denying another person’s reality triggers all sorts of deep hostile responses”.
No one endorses threats, obviously, but the point spectacularly missed by the media is that Simon and his disciples are responsible, in the first place, for creating a climate in which such threats might flourish, by denying the reality of a neurological illness for decades, the way they have.
My final point on this - I am so very, very, very weary with it all - is: Simon, if you want to be a neurologist so much - stealing neurological illnesses and labelling them as psychiatric - then why on earth did you become a psychiatrist?
* I'm pleased 'The Threats' wasn't in any Scottish broadsheet, but I could, of course, be forced to eat my words.
** I just saw this very moving trailer from Voices from the Shadows, premiering this autumn in Mill Valley, California.
Thanks, Simon.
And any letters of reply from our point of view or our charities' - ie people with ME, who live with it, who know it, who research it - have been so brutally edited, we've been lucky to get an adjectival phrase published.
'The Threats' has been a highly entertaining, unnerving mini-series, broadcast over a month:
First, we had Nigel in BMJ.
Then Tom on the BBC, who was so excited he sounded like he was in a spoof documentary.
Then Esther on Radio Five.
Then a panoply of small scale reports.
Then Rod; then David; then Stefanie with Simon himself in the Times.
Then Robin in the Observer.
Then a lovely cartoon in THES (removed).
Then Simon in the Spectator.
Then Max in the Telegraph, unplugged on Friday (then removed, remixed by Monday).
Then Robin on the Guardian Science Weekly Podcast in case we hadn't got the gist in the Observer.
Then Simon repeating himself on the Spectator blog, Coffee House.
So, I think we've got the message now, loud and clear - Simon and his followers will do anything to prevent biomedical research into ME, they desperately want to keep it all to themselves - with their loveable, eccentric and conflating notions of 'false illness beliefs' and 'chronic fatigue syndrome'. I return to an excellent quote regarding this whole stramash, from a journalist in 2007:
“I’m sure there is a lot of psychiatric literature on how denying another person’s reality triggers all sorts of deep hostile responses”.
No one endorses threats, obviously, but the point spectacularly missed by the media is that Simon and his disciples are responsible, in the first place, for creating a climate in which such threats might flourish, by denying the reality of a neurological illness for decades, the way they have.
My final point on this - I am so very, very, very weary with it all - is: Simon, if you want to be a neurologist so much - stealing neurological illnesses and labelling them as psychiatric - then why on earth did you become a psychiatrist?
* I'm pleased 'The Threats' wasn't in any Scottish broadsheet, but I could, of course, be forced to eat my words.
** I just saw this very moving trailer from Voices from the Shadows, premiering this autumn in Mill Valley, California.
6 comments:
Great blog Nasim.
What a shaming catalogue of media enablers.
i have to say your anger is energizing. and so important, nasim.
i wanted to pass along this e-mail i got last week from my son's best friend, Nick, whose sister is so sick. (i just discovered that Alexis has a blog, too: http://thecornerroom.tumblr.com/)
Dear Friends and Family,
We continue to struggle with my sister Alexis’ difficult and debilitating illness. Chris, my father, has moved permanently to St. Paul, MN to help Lex and Mike. He can no longer afford to make sculpture. Meanwhile the Whittemore Peterson Institute of Neuro-Immune Diseases in Reno Nevada has awarded Chris their “Advocate of the Year” award, and will honor him at their annual fundraiser in Reno in mid-September.
The Whittemore Peterson Institute remains a source of hope for us and millions of patients worldwide. The WPI is one of a very few places doing serious research into this illness. Recently they have developed a cytokine panel that defines a subgroup of neuro-immune patients. Alexis fits this immunological profile of immune deficiency. Next up: treatments.
We are going to use this opportunity of marking this award by presenting the WPI with a donation from Cairns friends and family. This collective donation will further research into this devastating illness. Chris will use this opportunity to promote his idea of grassroots giving, with particular target goals. For instance, he would like to raise enough money to hire another lab technician.
Donations can be sent via credit card or paypal on Chris's blog- cfspatientadvocate.blogspot.com or at wpinstitute.org
Checks can be mailed to:
Whittemore Peterson Institute
University of Nevada, Reno MS 0552
1664 N. Virginia Ave
Reno, NV 89557
Please use Chris's name in specifying the gift.
We appreciate very much your participation at this time.
With gratitude for your thoughts and efforts on Alexis’ behalf,
Nick Cairns
This month has been absolutely life-sucking with regard to the media - I just wish this clique of doctors would leave us alone - it surely cannot be right to harass a patient population they way they do?
What a thorough roundup. Thanks. Hopefully it's winding down.
Thanks for the heads up about the Mill Valley premiere. I'd like to go, it's only (only...) about a 5, 6 hour drive, but I'll just have to see how I'm feeling. I know my sister has a business trip to the Bay Area around then and there was talk of me taking the train up to see her. It would be perfect if her visit lined up with the screening, and she had time off to see it. I could ambush her. She's the one in my family the least willing to acknowledge about any biological illness I might have.
As to why Simon became a Psychiatrist, I found a link to a video interview where they ask him that the very first question. To closely paraphrase:
He found himself "more and more interested in the wider issues." It wasn't just about putting up drips, doing cardiac arrests and you know "the practical side of medicine,( although that was crucial)" "Psychiatry was the main discipline that saw people, as people as well, and I found that fascinating" "Most of all we are more curious about people, how they are what they think and what they do, what it is that make them tick" "I think it's the most exciting part of medicine and we're on the cutting edge of modern neuroscience" "We (psychiatry) do tend to attract the people who are more widely read, more thoughtful"
This is the kind of thinking that leads to statements about ME being a "metaphor for our times"
http://www.medicalcareers.nhs.uk/specialty_pages/psychiatry_information/a_career_in_psychiatry.aspx
What a comfort it is to know that Simon is enjoying his theorising and philosophising about illness whilst I've spent another day confined to bed with the intense, poisoned "flu" and neuro symptoms which haven't given me one day's respite in over 20 years.
It really does drive you to despair.
As Nasim says, thanks, Simon.
hey susan, i dipped into alexis' blog, heartbreaking, truly. yes, WPI, is a leading light, and have certainly energised research into the illness.
hey alison, i have been to mill valley, many years ago, i recall it was lovely wee town, i hope you make it there with your sister, and it increases her understanding of what you go through. thanks for the simon link - you have to laugh at his seemingly nonchalant arrogance... so he is more 'patient, more empathic, more mature, more curious' - but that does not prevent him from smearing an entire patient population in the media for a month. what a silly man. and if psychiatrists are 'more well-rounded' and 'read more novels', well he should really read TSOM.
hey amy, i know, i know, honey... as i've said many times i don't know how those who remain severely ill cope with this onslaught.
Post a Comment