tag:blogger.com,1999:blog-1345573145957924958.post7193122308603247398..comments2024-03-13T09:08:55.969-07:00Comments on Slightly Alive: Myra McClure and NIH's SEPMary Schweitzerhttp://www.blogger.com/profile/11583106682242141031noreply@blogger.comBlogger15125tag:blogger.com,1999:blog-1345573145957924958.post-68254978665873559162011-05-30T13:01:14.649-07:002011-05-30T13:01:14.649-07:00Aloha Mary,
A friend passed your site on to me. I...Aloha Mary,<br /><br />A friend passed your site on to me. I am glad I found you, and the others here. I am sure the numbers of ME sufferers are higher than estimated. I am an RN in Hawai'i. For the last 4 yrs, I have been mainly bedridden. The exhaustion and pain inexplicable. All I have is my husband, my faith, and a few friends who keep in touch online, knowing I cannot tolerate visitors. Love and aloha to you all out there! PS I pretty much gave up 2 years ago realizing there is no cure, only rest, rest, and more rest, hoping for those few moments when I feel I can get up for a little while :) I continue in online education to keep up on latest nursing.<br /><br />With hugs,<br />Rosy NewlunRosy Newlunhttps://www.blogger.com/profile/14008237215115496467noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-17316766427407673262011-02-06T23:07:20.421-08:002011-02-06T23:07:20.421-08:00My goodness, she has withdrawn already? It's ...My goodness, she has withdrawn already? It's probably wise of her.<br /><br />I didn't see who made these appointments .. Hoshaw?. Couldn't they find more ME/CFS docs and retrovirologists?zachttps://www.blogger.com/profile/15189027321961226572noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-7551730254773096532011-02-06T14:22:13.157-08:002011-02-06T14:22:13.157-08:00Guess What? Myra says she's withdrawn !
Here ...Guess What? Myra says she's withdrawn !<br /><br />Here is an email exchange with Marty:<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 we have made this clear to the other members of this panel."<br /><br />Her reply:<br /><br />"I already have." <br /><br />KatrinaKatrinahttps://www.blogger.com/profile/16212293763187190176noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-81291635733044667852011-02-06T08:58:51.460-08:002011-02-06T08:58:51.460-08:00Thanks Mary - very disappointing change from the l...Thanks Mary - very disappointing change from the last panel. You can find the list and their past research here: <br /><br />http://forums.aboutmecfs.org/content.php?356-CFS-NIH-Grant-Panel-%28SEP%29-Feb-2010Corthttps://www.blogger.com/profile/15277616818857416397noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-33395147392171947282011-02-06T03:23:13.080-08:002011-02-06T03:23:13.080-08:00@Robin:
I think this link might answer your questi...@Robin:<br />I think this link might answer your question:<br /><br />http://www.meactionuk.org.uk/DSM-V-submission.htmLilpinkhttps://www.blogger.com/profile/11480603897401811321noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-35407748741420376762011-02-06T02:14:10.882-08:002011-02-06T02:14:10.882-08:00Repugnant is the word. Maybe I do need psychiatri...Repugnant is the word. Maybe I do need psychiatric help as I can't face the reality of those links you provide.<br /><br />Having woken to face another day of illness, I can't take on that burden of hatred from people charged to help us.<br /><br />One good note, every time those people send a hand grenade over the lines I whip out my credit card and donate what I can to WPI. <br /><br />Salvation!<br /><br />HelenUnknownhttps://www.blogger.com/profile/00931247995883815192noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-49419615527324847602011-02-06T00:16:00.237-08:002011-02-06T00:16:00.237-08:00Thanks Mary for this wonderful piece, as usual. As...Thanks Mary for this wonderful piece, as usual. As an immigrant from Europe into the United States and who had to jump(my husband, not me :-)) through many hoops for years to get a work permit and a residence permit I am amazed and outraged that someone obviously from abroad with no expertise at all takes place in a committee of a country she isn't even a resident in. What on earth is the meaning of this? Does it mean the USA hasn't any reseachers who can fit the profile? Why doesn't McClure just stay in the UK where she is a resident and continue her crusade from there? I find it more than strange that the NIH apparently thinks they need foreigners(does she have a work permit?) in their committee and skip the law that states that places/jobs need to be filled with residents/citizens first before inviting foreigners to apply. I wonder how this is going to pan out, is she going to jet from the UK to the USA every time there is a meeting or is she a full time board member. If she is going to live here she was probably able to skip the 2-3 year waiting period for a visa. Very strange and I wonder if it's all legal.Tinkhttps://www.blogger.com/profile/16951231576228161688noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-49393682600613660492011-02-05T17:31:25.478-08:002011-02-05T17:31:25.478-08:00What on earth is a retrovirologist from the UK doi...What on earth is a retrovirologist from the UK doing sitting on a panel in the US that will be involved in grants in the USA?<br /><br />That question alone boggles the mind, let alone this woman's publicly stated dismissal of XMRV. I believe she said last year she would have nothing more to do with it. <br /><br />Hey Myra, we liked your first idea. Stay home! We don't want you!Anonymoushttps://www.blogger.com/profile/06831501528301346553noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-26459122317675216702011-02-05T15:58:43.393-08:002011-02-05T15:58:43.393-08:00Thanks, Mary...sane information as usual.
Hey, P...Thanks, Mary...sane information as usual. <br /><br />Hey, Pat...maybe he's feeling as sick and as ostracized as we are...isn't that nice?<br /><br />You and Mary are two of our rocks! Foundational.<br /><br />Do you think the SoK will change anything?kathrynhttps://www.blogger.com/profile/16819415896159458802noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-18511790777657971432011-02-05T15:03:39.266-08:002011-02-05T15:03:39.266-08:00During his Royal Society of Medicine “CFS” Confere...During his Royal Society of Medicine “CFS” Conference presentation, in April 2008, Prof White had told the conference:<br /><br />…So ICD-10 is not helpful and I would not suggest, as clinicians, you use ICD-10 criteria. They really need sorting out; and they will be in due course, God willing.ME Retrovirushttps://www.blogger.com/profile/10398086179187016393noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-14681806883171234372011-02-05T14:30:00.372-08:002011-02-05T14:30:00.372-08:00GOOD JOB Mary...what a maze, hey? I think the new ...GOOD JOB Mary...what a maze, hey? I think the new CFS SEP Scientific Review Officer is probably feeling assaulted and defensive or is feeling sick. You know, since Dr. Hoffeld left, we have had several SRO's. Hoshaw may leave too. Maybe it's like tater duty, you think?<br /><br />Problems will continue until policy at NIH changes and this CRUD illness is out of this review section. They can operate fine without us, despite the name CFS SEP... THE OTHER THING IS THAT ANY SCIENTIST CAN ASK FOR A DIFFERENT REVIEW GROUP.pat ferohttps://www.blogger.com/profile/17941819067748608283noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-51780599377730811002011-02-05T14:21:28.971-08:002011-02-05T14:21:28.971-08:00It is wonderful to read such a sane, cogent, artic...It is wonderful to read such a sane, cogent, articulate, historically factual account of the madness we are living.<br /><br />Thank you!Honorahttps://www.blogger.com/profile/12822928246334441926noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-90406898561347373882011-02-05T14:19:26.867-08:002011-02-05T14:19:26.867-08:00Thanks, Mary, for being such a tireless advocate f...Thanks, Mary, for being such a tireless advocate for those who can not.<br /><br />Your analysis of the psych school's gerrymandering of cohort definition is fascinating if repugnant. My knowledge of the UK psychiatrists is limited -- have they ever just flat out pushed to have CFS fall under the umbrella of fictitious disorders? How do they account for patients who have no primary psychiatric disorder?Robinhttps://www.blogger.com/profile/03146259402428090072noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-79315091593168027902011-02-05T14:02:24.500-08:002011-02-05T14:02:24.500-08:00mcClure has a unique approach to science
boring c...mcClure has a unique approach to science<br /><br />boring conventional scientists replicate research and then change one variable at a time so that cause and effect can be established<br />McClure on the other hand has a far more adventurous approach.When trying to reproduce results she doesnt replicate and changes all the variables so we can have fun trying to guess why she could not find the virus. She then adds the touch of a true comedienne by saying ."If it was there I am sure we would have found it". Comedy like this is rare in todays world.She is clearly the best retrovirologist in showbusinessAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-72512309556002597182011-02-05T13:52:07.744-08:002011-02-05T13:52:07.744-08:00Thank you Mary. Well said. Now will send more e-ma...Thank you Mary. Well said. Now will send more e-mailsAnonymoushttps://www.blogger.com/profile/12281551619335996831noreply@blogger.com