tag:blogger.com,1999:blog-1078685116296921818.post4345821799866023957..comments2023-04-26T09:15:19.142-04:00Comments on CFS Central: MISSION POSSIBLE:Mindy Kiteihttp://www.blogger.com/profile/12570126270241201680noreply@blogger.comBlogger25125tag:blogger.com,1999:blog-1078685116296921818.post-22376594421052008512011-02-07T03:03:44.197-05:002011-02-07T03:03:44.197-05:00You file an Rico class action lawsuit against offi...You file an Rico class action lawsuit against officials of the NIH and CDC. Google it.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-20495422360835671122011-02-06T18:49:07.028-05:002011-02-06T18:49:07.028-05:00@ Erik LOL Of Course :)) but it's actually Mar...@ Erik LOL Of Course :)) but it's actually Marty who had this exchange today. And many patients did write to the NIH and SEP Committee, plus MMC!<br /><br />Yippee!<br /><br />KatrinaKatrinahttps://www.blogger.com/profile/16212293763187190176noreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-6769874283291460642011-02-06T17:42:24.462-05:002011-02-06T17:42:24.462-05:00Wow!
Katrina, with results like that, may I implo...Wow!<br /><br />Katrina, with results like that, may I implore you to send an email to Jim Jones, telling him to go drink some Kool Aid?Erik Johnsonnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-24559496989214726372011-02-06T17:28:56.369-05:002011-02-06T17:28:56.369-05:00Myra McClure states she has withdrawn from the Pan...Myra McClure states she has withdrawn from the Panel !---Here is an email exchange with Marty today:<br /><br />I sent the following email to Myra McClure today:<br /><br />"Please withdraw from the U.S. Government's SEP (Special Emphasis Panel) for ME/CFS. <br /> <br />I have lost 35 years of my adult life to this disease. We have to demand researchers who recognize the disease, and weKatrinahttps://www.blogger.com/profile/16212293763187190176noreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-12840096345955855522011-02-06T08:21:34.671-05:002011-02-06T08:21:34.671-05:00Here again we are at the crux of how and why we su...Here again we are at the crux of how and why we support the medical research that we actually support. The crux of the matter is, a peer review process that leads to the most rigorous and independent, though not perfect, review of scientific and clinical merit.<br /><br />Here we are facing a disease with negative consequences on the lives and productivity of Americans that is getting miserable Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-21624593751515004312011-02-06T07:32:34.367-05:002011-02-06T07:32:34.367-05:00I'm surprised to see that, too. Non-Americans...I'm surprised to see that, too. Non-Americans deciding on grant approvals. Even last year, Broderick (I believe he's Canadian), a pro-CFS fellow, was on the committee. Maybe they can have input, but they shouldn't have voting rights. The same goes for Stoye.zachttps://www.blogger.com/profile/15189027321961226572noreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-77959827957336785022011-02-05T15:21:27.224-05:002011-02-05T15:21:27.224-05:00Thanks Mindy. Patrica's letter makes an excell...Thanks Mindy. Patrica's letter makes an excellent template and resource for those of us wanting to craft our own.<br /><br />There are so many good people and they pick someone who has been publically critical of patients and who has a vested interest. Who has a belief that a pivotal *ongoing* area of research isn't important... Who isn't even a US citizen!jddhttp://jdd.comnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-26186334948097859812011-02-04T19:14:57.985-05:002011-02-04T19:14:57.985-05:00Read "Chronic Fatigue Syndrome: A Novel"...Read "Chronic Fatigue Syndrome: A Novel" and follow the money. Cheap and easy read. http://www.amazon.com/Chronic-Fatigue-Syndrome-Bureaucracy-Belief/dp/1456334808/ref=pd_rhf_p_t_1Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-67192437816124368192011-02-04T13:26:42.985-05:002011-02-04T13:26:42.985-05:00That wasn't McClure, it was Esther Crawley.That wasn't McClure, it was Esther Crawley.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-57772556947155242052011-02-04T12:40:59.507-05:002011-02-04T12:40:59.507-05:00Does ANYONE have a link to the video that McMlure ...Does ANYONE have a link to the video that McMlure gaave ina seminar in teh UK? I HAVE to find it. In it she states that teh WPI doesnt even exist, and that the photos coming form the WPI websire on the building of the center were fake. I want to include that in teh email. <br /><br />It's so inflamatory and she sounds like an idiot (more than usual).<br /><br />I will try and find it, but if Kate Weatherfordhttps://www.blogger.com/profile/02684275471391065913noreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-19922633405501250062011-02-04T12:36:28.055-05:002011-02-04T12:36:28.055-05:00Thanks Mindy !!Thanks Mindy !!Dr Speedyhttps://www.blogger.com/profile/04873114586852370992noreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-49393651360723239492011-02-04T11:57:36.090-05:002011-02-04T11:57:36.090-05:00Does ANYONE have a link to the video that McMlure ...Does ANYONE have a link to the video that McMlure gaave ina seminar in teh UK? I HAVE to find it. In it she states that teh WPI doesnt even exist, and that the photos coming form the WPI websire on the building of the center were fake. I want to include that in teh email. <br /><br />It's so inflamatory and she sounds like an idiot (more than usual).<br /><br />I will try and find it, but if Kate Weatherfordhttps://www.blogger.com/profile/02684275471391065913noreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-66599268757455723492011-02-04T09:13:16.755-05:002011-02-04T09:13:16.755-05:00Though I can barely manage one class at a time, I ...Though I can barely manage one class at a time, I went back to university to work out a framework for preventative mental health reform to support my child who is facing discrimination and lack of medical and social support for neuropsychiatric illness. (An illness which may be caused in some way by XMRV.) I use what I learned in school and through almost fifteen years of advocacy in mental Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-45443465783122611262011-02-04T08:03:09.214-05:002011-02-04T08:03:09.214-05:00Is there a world body for human rights to hear abo...Is there a world body for human rights to hear about the negligence and corruption generally around this disease?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-90890020757877016742011-02-04T06:18:29.276-05:002011-02-04T06:18:29.276-05:00Just shaking my head in dismay... thanks for keepi...Just shaking my head in dismay... thanks for keeping on top of this, Mindy.Nicky Reisshttps://www.blogger.com/profile/07409857304770649251noreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-80579358598511519052011-02-03T23:13:16.277-05:002011-02-03T23:13:16.277-05:00I agree that it looks like we were handled by the ...I agree that it looks like we were handled by the NIH in the past months. Looks like we're back to square one. Veeery disappointing. One can only wonder why governments are so dead set on denying a biological cause for ME/CFS. It doesn't make sense for so many well educated people to be so narrow-minded.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-71792160112678762142011-02-03T22:56:30.016-05:002011-02-03T22:56:30.016-05:00Sorry for the confusion here. It looks like my po...Sorry for the confusion here. It looks like my post at 9:53pm (5th post down) got cut off. Also, I have improved the letter, so please check it out at the link to PR forums here, post #11, p.2 of thread (the same link also mentioned in my later post):<br /><br />http://forums.aboutmecfs.org/showthread.php?9873-Stars-Not-Aligned-Any-More-CFS-SEP-Panel-Reverts-McClure-on-Board/page2Justinhttps://www.blogger.com/profile/16661093224060056052noreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-84087096767043959092011-02-03T22:51:39.484-05:002011-02-03T22:51:39.484-05:00Here is the letter I sent. I used most of Patricia...Here is the letter I sent. I used most of Patricia Carter's letter then added my own objections to McClure's saying things in the press which were unsupported by the science and also a complaint on the over-all make up of the SEP (text authored by Dr. Yes). Please, as always feel free to us the whole or any part of this letter unattributed. Letter edited so that it is ready to just cut Justinhttps://www.blogger.com/profile/16661093224060056052noreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-89787096039669332962011-02-03T22:23:45.734-05:002011-02-03T22:23:45.734-05:00Thanks Mindy for following up on this important Ma...Thanks Mindy for following up on this important Manner. First, This is BOTH a slap in the face and a stab in the back to ALL patients in America who suffer from M.E. and CFS or FMS. Dr. Harvey J. Alter, the single highest official at the NIH in charge of blood transfusions, who has also discovered the Hep. C virus in the US blood supply, and won the Lasker prize for his work, the most prestigiousTMHJRhttps://www.blogger.com/profile/12132963783631537933noreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-78019499284418215712011-02-03T22:03:37.545-05:002011-02-03T22:03:37.545-05:00sent. thank you for sharing the text of the protes...sent. thank you for sharing the text of the protest letter. my mind is too tired to compose such a letter myself. we should also be protesting Dr. Stoye (from the UK) moderating the various XMRV conferences.Davidhttps://www.blogger.com/profile/10778342601996392913noreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-32382638495506962952011-02-03T21:53:43.898-05:002011-02-03T21:53:43.898-05:00I sent Ms. Carter's excellent letter and have ...I sent Ms. Carter's excellent letter and have added the below to it. Please use this text if you wish!<br /><br /><br />'Prof. McClure has claimed her studies prove facts which were not shown in the science when commenting to the press to disparage WPI.<br /><br />She is also a collaborator of well-known anti- ME science charlatan Simon Wessely:<br /><br />BBC on-line:<br />http://Justinhttps://www.blogger.com/profile/16661093224060056052noreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-63042561490616606922011-02-03T21:01:57.517-05:002011-02-03T21:01:57.517-05:00I just read the commitee bio above. The U.S. gover...I just read the commitee bio above. The U.S. government supports psychological approaches to ME it looks like. Sadly, I think ME patients were being 'handled' by polticians for the past few months. Actions speak louder than words, and the NIH grant panel that includes McClure speaks volumes.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-19752841126900661352011-02-03T20:56:18.653-05:002011-02-03T20:56:18.653-05:00I am on it. As a Canadian I am invested in the U.S...I am on it. As a Canadian I am invested in the U.S approach to ME/CFS too. What happens in your country effects me and others internationally. The thing I find incomprehensible about assigning Myra McClure to the NIH commitee is her definative public statements against the presence of XMRV in ME/CFS. Her sneering attitude toward science that contradicted her own at XMRV related meetings was not Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-85152694722287253202011-02-03T20:49:53.863-05:002011-02-03T20:49:53.863-05:00The Scientific Review Officer (SRO) in charge of ...The Scientific Review Officer (SRO) in charge of this Special Emphasis Panel (SEP) meeting is Brian Hoshaw, Ph.D. <br /><br /> “Dr. Hoshaw received his Ph.D. in experimental PSYCHOLOGY from Temple University. He then worked as a postdoctoral fellow and research associate in the PSYCHIATRY Department at the University of Pennsylvania.” http://www.csr.nih.gov/photodisplay/finalroster.aspx?f=Flohttps://www.blogger.com/profile/00565087657214691714noreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-12143271585294229802011-02-03T20:19:48.660-05:002011-02-03T20:19:48.660-05:00Thanks Mindy. Thanks Patricia.Thanks Mindy. Thanks Patricia.Anonymousnoreply@blogger.com