tag:blogger.com,1999:blog-25745858.post3762126873537769831..comments2023-11-30T13:49:20.131+00:00Comments on NASIM MARIE JAFRY: ON WRITING, READING and CHRONIC ILLNESS: Storytelling (5)nmjhttp://www.blogger.com/profile/05477643084619789093noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-25745858.post-26481637418449035102011-08-22T23:13:39.372+01:002011-08-22T23:13:39.372+01:00And they appear to have toned down the headline in...And they appear to have toned down the headline in the online version. I have the actual Observer from yesterday. An entire page with the dramatic headline: 'Scientists face stream of ME death threats' and then sub-heading: 'Assaults, hatemail and knife attacks are the daily fear of researchers into chronic fatigue' bla bla bla<br /><br />I think we should all call Simon's bluff. Say, Okay, Simon, you are right, we are all mentally ill. Let's do graded exercise, let's go treadmilling, can't wait. And how long til we are all bedridden again? That will be lovely, very productive for society.nmjhttps://www.blogger.com/profile/05477643084619789093noreply@blogger.comtag:blogger.com,1999:blog-25745858.post-86921944623428509232011-08-22T23:04:40.021+01:002011-08-22T23:04:40.021+01:00http://www.oslersweb.com/blog.htm?post=807525
Sup...http://www.oslersweb.com/blog.htm?post=807525<br /><br />Support for all of us in UK from Osler's Web author Hillary Johnson. I'd gone to the thread to follow up a comment I'd left earlier and was delighted to see she very much enjoyed The State of Me, called it 'classy writing'.<br /><br />I wonder if Simon reads her website, he should.nmjhttps://www.blogger.com/profile/05477643084619789093noreply@blogger.comtag:blogger.com,1999:blog-25745858.post-35463601090944034812011-08-21T19:37:45.059+01:002011-08-21T19:37:45.059+01:00Just sent this to Observer:
Dear Editor
RE. Sci...Just sent this to Observer:<br /><br />Dear Editor<br /> <br />RE. Scientists face stream of ME death threats:<br /> <br />I'm disappointed to see the Observer join in this cartel of hyperbole and bias from Professor Wessely and his followers on the subject of ME. One wonders why, since the alleged threats are from a tiny, tiny minority, Professor Wessely feels the need to be courting such dramatic headlines week after week? Could it have anything to do with the 'International Consensus Criteria for ME' published in the Journal of Internal Medicine in July, which agree on post-exertional neuroimmune exhaustion (PEM) as the defining feature of ME? Unfortunately, patients know only too well that Drs Wessely and Crawley - and the others - do not study neuroimmune ME, they study - by their own criteria - a broader, less disabling, less complex fatigue that appears to respond to graded exercise and CBT. I was diagnosed with virally-induced myalgic encephalomyeltis (ME) - the label 'CFS' had not yet been coined - in 1984 by a consultant neurologist, so it's fair to say I have an in-depth knowledge of the illness. I was transformed from a vibrant, straight 'A' undergraduate to a grey and bedridden 20-yr-old. I contracted an enterovirus and never recovered. Almost thirty years later, I remain ill. Graded exercise makes me worse, and Crawley's talk of social deprivation and stress and adversity as a cause in adults is nonsensical to me.<br /> <br />Nasim Marie Jafry, author of 'The State of Me'nmjhttps://www.blogger.com/profile/05477643084619789093noreply@blogger.comtag:blogger.com,1999:blog-25745858.post-73603230261105516182011-08-21T19:22:26.657+01:002011-08-21T19:22:26.657+01:00I looked in the Comedy Guide to the Edinburgh Frin...I looked in the Comedy Guide to the Edinburgh Fringe to see if Crawley & Wessely were maybe doing a double act of black comedy: How to Smear an Entire Patient Population to Save your own Very Flawed Research.<br /><br />What can we expect next weekend, their very own cartoon strip in one of the Sunday supplements?<br /><br />I am sick of these buffoons, I really am.nmjhttps://www.blogger.com/profile/05477643084619789093noreply@blogger.comtag:blogger.com,1999:blog-25745858.post-16426961610417420492011-08-21T17:59:40.236+01:002011-08-21T17:59:40.236+01:00What is it with Simple Simon ? I just couldn'...What is it with Simple Simon ? I just couldn't believe it when I noticed he'd popped up in the press again today....and hawking the same old whines and : abberant stalking beliefs ?Cusphttps://www.blogger.com/profile/10717783581169397585noreply@blogger.comtag:blogger.com,1999:blog-25745858.post-6720986595061142382011-08-21T17:57:41.749+01:002011-08-21T17:57:41.749+01:00Thank you for posting this. You can post a respon...Thank you for posting this. You can post a response to this ridiculous Gardian article here: http://www.nakedcapitalism.com/2011/08/links-82111.html<br /><br />I have posted one. I hope other people will too. Here's mine:<br /><br /> August 21, 2011 at 12:30 pm<br /><br />Re: Chronic fatigue syndrome researchers face death threats from militants. No evidence whatsoever has been produced by any of these researchers who are accusing people suffering with Myalgic Encephalomyelitis (M.E.) of harrassing them. People who suffer from this disease are in constant pain and they are often disabled and homebound. It is difficult to imagine these healthy researchers really feeling threatened by patients who are often too sick to leave their homes. In any group, however, there may be a few people who are unbalanced and say unwise things. Should a whole category of medical patients be accused of proposed wrongdoing if and when a tiny number of people who are believed to have their same diagnosis make the mistake of saying words which can be interpreted as threats? If we do this, then any group should be accused the same way. Why should people suffering with a real physical illness be continually denied treatment because some researchers believe the illness to be psychological? That is the real question. Simon Wessely and his friends in the psychology business have been denying effective treatment to people who are suffering brain lesions, continual physical pain, inability to work and other patients are dying from the results of this illness. And this has been going on for years. THIS IS THE REAL PROBLEM. The problem is not a few unkind words being said to these psychologists who are denying treatment for physical illness; the problem is the denial of treatment.<br /> <br />Patricia CarterWildaisyhttps://www.blogger.com/profile/03387587496317619866noreply@blogger.com