tag:blogger.com,1999:blog-25745858.post3990531604600840449..comments2023-11-30T13:49:20.131+00:00Comments on NASIM MARIE JAFRY: ON WRITING, READING and CHRONIC ILLNESS: Ignorance about ME is unacceptable when you are editor of The Lancetnmjhttp://www.blogger.com/profile/05477643084619789093noreply@blogger.comBlogger12125tag:blogger.com,1999:blog-25745858.post-5156645405689217352011-05-01T13:27:03.476+01:002011-05-01T13:27:03.476+01:00Complete arse of a doctor in Irish Medical Times:
...Complete arse of a doctor in Irish Medical Times:<br /><br />http://www.imt.ie/opinion/2011/04/the-pace-of-chronic-fatigue.html<br /><br />Jane Colby's response: http://www.imt.ie/opinion/2011/04/doctor-showed-himself-up-with-lack-of-knowledge.htmlnmjhttps://www.blogger.com/profile/05477643084619789093noreply@blogger.comtag:blogger.com,1999:blog-25745858.post-90282878456426154922011-04-28T12:54:35.472+01:002011-04-28T12:54:35.472+01:00http://niceguidelines.blogspot.com/2011/04/uk-pace...http://niceguidelines.blogspot.com/2011/04/uk-pace-trial-its-zombie-science-is.htmlnmjhttps://www.blogger.com/profile/05477643084619789093noreply@blogger.comtag:blogger.com,1999:blog-25745858.post-45125733183949064392011-04-28T11:58:03.624+01:002011-04-28T11:58:03.624+01:00http://niceguidelines.blogspot.com/2011/04/jo-best...http://niceguidelines.blogspot.com/2011/04/jo-bests-superb-letter-to-richard.htmlnmjhttps://www.blogger.com/profile/05477643084619789093noreply@blogger.comtag:blogger.com,1999:blog-25745858.post-36434916102638508992011-04-22T13:44:28.770+01:002011-04-22T13:44:28.770+01:00http://www.mecfsforums.com/wiki/Rejected_Letters_t...http://www.mecfsforums.com/wiki/Rejected_Letters_to_the_Lancet#Letters_from_ME_organisationsnmjhttps://www.blogger.com/profile/05477643084619789093noreply@blogger.comtag:blogger.com,1999:blog-25745858.post-65403231659093644442011-04-21T18:43:25.941+01:002011-04-21T18:43:25.941+01:00List of some of PACE complaints letters rejected b...List of some of PACE complaints letters rejected by Lancet - via Phoenix forum:<br /><br />http://forums.phoenixrising.me/showthread.php?11134-PACE-Trial-letters-that-were-not-accepted-by-the-Lancet<br /><br />Standard response seems to be: <i>Thank you for submitting your letter. After in-house review, I'm afraid we have decided not to accept it for publication. We regret that we are unable to write a personal note for every letter we turn down, but the following common reasons for rejection may help you with future submissions: lateness (ie, more than 2 weeks after publication of the article on which you are commenting), inclusion of original research (the section is not peer reviewed, so we cannot publish such work here), submission of case reports (we have a separate section for these), reiteration of points made by another correspondent, and inappropriate length (limits are 250 words and 5 references). If none of these apply to your letter, please be assured that we have nevertheless considered it carefully and probably had to refuse it because we have simply received too much good material. </i><br /><br />It reminds me of the standard rejection letters you get when you are starting off, trying to get short fiction published but in this case the fiction is PACE! This really is disturbing - both Invest in ME and MEA have been rejected.nmjhttps://www.blogger.com/profile/05477643084619789093noreply@blogger.comtag:blogger.com,1999:blog-25745858.post-24353681634854707342011-04-20T18:39:36.569+01:002011-04-20T18:39:36.569+01:00Hey nmj, another well written piece and thanks als...Hey nmj, another well written piece and thanks also for the added information about Horton's previous article.Jackhttps://www.blogger.com/profile/02804867745121472685noreply@blogger.comtag:blogger.com,1999:blog-25745858.post-63110876068388312322011-04-20T15:43:34.858+01:002011-04-20T15:43:34.858+01:00I also think Kay Gilderdale's decision to talk...I also think Kay Gilderdale's decision to talk to the media, giving a detailed account of her poor daughter's experience of ME and her cruel treatment by the medical profession, is a sharp reply to the PACE guff and offers the public a different story to the usual rubbish. <br /><br />If I was anyone who allowed this state of affairs to continue after reading such stories, especially if I could've changed it, I wouldn't be able to live with myself or the pain I'd caused others.sylvieromyhttps://www.blogger.com/profile/07068886286841867666noreply@blogger.comtag:blogger.com,1999:blog-25745858.post-65209480227962388062011-04-20T15:36:03.404+01:002011-04-20T15:36:03.404+01:00What's so odd is that we're always being t...What's so odd is that we're always being told that researchers etc get put off from studying this area because it's so full of controversy, yet the psychos are never put off. I wonder what keeps them here?sylvieromyhttps://www.blogger.com/profile/07068886286841867666noreply@blogger.comtag:blogger.com,1999:blog-25745858.post-56476230844109555472011-04-20T11:48:30.459+01:002011-04-20T11:48:30.459+01:00Hey Cusp, I meant that when you are severe, there ...Hey Cusp, I meant that when you are severe, there is no choice but to lie down, you are bedridden and feel as if you are dying. This is not the same as lying back/giving up as Prof Sharpe seems to be suggesting. And if you do begin to recover spontaneously - and I mean small, often imperceptible steps - with rest and time - you should definitely not hijack your healing with GET/pushing beyond limits. That is surely the way to relapse, permanent ME.<br /><br />Hey Sylv, You would think so, wouldn't you? But this lot just seem to hold ever more tenaciously to their beliefs. The more you think about it, the more you realise that the ABC interview was so staged to discredit ME sufferers who are opposed to PACE ie - most of us!nmjhttps://www.blogger.com/profile/05477643084619789093noreply@blogger.comtag:blogger.com,1999:blog-25745858.post-59381063408566326152011-04-20T00:27:30.316+01:002011-04-20T00:27:30.316+01:00If I was a doctor or a researcher, and so many of ...If I was a doctor or a researcher, and so many of my patients consistently, said I'd got it wrong, I would eventually wonder whether I'd got it wrong...sylvieromyhttps://www.blogger.com/profile/07068886286841867666noreply@blogger.comtag:blogger.com,1999:blog-25745858.post-80671128629283538432011-04-19T21:56:33.115+01:002011-04-19T21:56:33.115+01:00What's frightening to me is that the more such...What's frightening to me is that the more such opinions are expressed by people like Horton, the more 'ordinary people' assume that people with M.E. or chronic fatigue, or whatever they choose to call it, ARE just a bunch of slightly demented rabble rousers who choose to just lie back and wait. All the people I know with M.E. might be lying down (when they HAVE to) but even then they are fighting and searching and trying for answers, clues....ANYTHING to be well again.<br /><br />On the other hand of course, in the earlier stages of he illness one probably IS better off lying down rather than exercising and I wish to God I'd listened to myself instead of GP about GET. I wish I'd followed the mantra which was given to my father when he was ill with TB in the 1940s 'Never walk if you can sit. Never sit if you can lie down'Cusphttps://www.blogger.com/profile/10717783581169397585noreply@blogger.comtag:blogger.com,1999:blog-25745858.post-80603977922001037762011-04-19T21:04:09.279+01:002011-04-19T21:04:09.279+01:00It should also be pointed out that when you have s...It should also be pointed out that when you have severe ME you have no choice but 'to lie down and wait for time', but it is hardly the relaxing process Prof Sharpe is hinting at. It is like living in some kind of hell.<br /><br />And this below from: http://www.meactionuk.org.uk/The-Media-and-ME.htm<br /><br /><b>'There is one crucial point that should not be overlooked amidst the multitude of comments, spin, disquiet and anger surrounding the clearly contrived and exaggerated results of the PACE Trial, which is that if the PACE Trial Investigators had claimed to be studying the effect of CBT/GET on people with medically unexplained or idiosyncratic “fatigue”, few people would have objected.<br /><br />What is fuelling the opprobrium is the fact that the PACE Trial Investigators insist that they have been studying those with “CFS/ME”, which is how they refer to the neuroimmune disorder ME/CFS.'</b>nmjhttps://www.blogger.com/profile/05477643084619789093noreply@blogger.com