tag:blogger.com,1999:blog-1294356699705810200.post8691125791098616339..comments2023-05-17T15:38:43.104-04:00Comments on Twenty Years and Counting: NIH SoK: The Good, the Bad, and the UglyLiz Willowhttp://www.blogger.com/profile/11224204717888883351noreply@blogger.comBlogger9125tag:blogger.com,1999:blog-1294356699705810200.post-49308901902269118142011-05-05T05:50:48.675-04:002011-05-05T05:50:48.675-04:00Very good essay here. I would say more but my CFI...Very good essay here. I would say more but my CFIDS is acting up, and I can't write more.<br /><br />I read the CFIDS Association website's updates for May, research updates and information, and there was much there.<br /><br />There seems to be much more research going on than ever before.<br /><br />Judy Mikovits is a hero in my opinion, and she has stood up to vitriol and ridicule and maintained her scientific discoveries.<br /><br />Scientists at Harvard Medical School (rah to Kamaroff), NIH and FDA seem to be finding retroviral evidence, too.<br /><br />I hope that soon the naysayers and "psychological causes" types will all be set back with scientific evidence of this very debilitating disease.kathy d.noreply@blogger.comtag:blogger.com,1999:blog-1294356699705810200.post-37369239434704901972011-04-13T13:38:30.067-04:002011-04-13T13:38:30.067-04:00"Thankfully, NIH Director Collins mentioned t..."Thankfully, NIH Director Collins mentioned the need for a new definition (albeit with subsets)"<br /><br />Why 'albeit'? That there are subsets within this illness would seem rational and sensible to me. There is real danger in trying to create a 'purist' definition of ME as being the only subset worth having. <br /><br />If the ME purists want to retain the support of the rest of the CFS/ME community in pushing through the science, then they need to acknowledge that the community includes a number of different viral onset strands which have just as much right to science and services.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1294356699705810200.post-3633164631106640572011-04-12T23:49:39.165-04:002011-04-12T23:49:39.165-04:00ME patients need to keep pushing for ME to be reco...ME patients need to keep pushing for ME to be recognized. The reaction to this - from dead silence to censorship to overt hostility - is telling. We go on with these pronouncements and talk about "our illness" or "this illness," yet never say what it is nor seem to realize it does matter. <br /><br />We have sites/resource centers with info, articles on CFS, ME/CFS, ME, whatever anyone uses or means... Within the same article it will say "CFS research" "ME/CFS patients," "ME studies" and even flip back and forth. Definitions are critical and we ignore it. Or perhaps may occasionaly revisit the "we need subsets" debate. Of - CFS. It's time to divide and conquer.Jillhttps://www.blogger.com/profile/01316284870104429837noreply@blogger.comtag:blogger.com,1999:blog-1294356699705810200.post-68440325928301930462011-04-12T20:16:34.953-04:002011-04-12T20:16:34.953-04:00Thank you for attending, and thank you for reporti...Thank you for attending, and thank you for reporting. You pointed out several things I had not read in any of the other reports, such as: "McCleary was not on the planning committee for this conference, yet she hovered near Mangan toward the end."Flohttps://www.blogger.com/profile/00565087657214691714noreply@blogger.comtag:blogger.com,1999:blog-1294356699705810200.post-52842064843358224642011-04-12T19:42:15.595-04:002011-04-12T19:42:15.595-04:00Thanks for putting this all into perspective for u...Thanks for putting this all into perspective for us. It was interesting to hear the take of someone who attended this conference and the IACFS conference nearly 20 years ago. Remarkable how little we have moved forward. It seems like it would require more work to stagnate to this degree than it would to just move forward.Khaly Castlehttps://www.blogger.com/profile/11225321930336123939noreply@blogger.comtag:blogger.com,1999:blog-1294356699705810200.post-20397587880610767162011-04-12T18:33:27.776-04:002011-04-12T18:33:27.776-04:00I just finished reading my spring issue of the new...I just finished reading my spring issue of the newsletter from the National CFIDS Foundation. They reminded me that Dr. DeFreitas' retroviruses was replicted with their funding many years ago and the results shared at a medical conference. It was not causative. I found little proven science even alluded to at the recent NIH conference. Was it really done to merely soothe the patient community?<br /><br />V.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1294356699705810200.post-12586296806631033602011-04-12T17:19:36.107-04:002011-04-12T17:19:36.107-04:00Excellent article! Thank you for taking the time a...Excellent article! Thank you for taking the time and energy to review the recent NIH SoK for those of us who were unable to attend and too ill to watch the videos.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1294356699705810200.post-5603438613233593162011-04-12T16:31:23.223-04:002011-04-12T16:31:23.223-04:00I think your statement "from the dark ages to...I think your statement "from the dark ages to the middle ages" really captures it well!<br /><br />"As I watched the NIH attendees, I believe this is the first time many of them understood the serious nature(...)" <br /><br />--I agree with that, most of the NIH people seemed like they were coming from a state just not knowing much at all about it previously--from a state of ignorance if you will. It remains to be seen how much they will do. <br /><br />Wasn't impressed that this was the case with the CDC, though, from the snippets I saw they still seem intent on it being "mind-body". It feels to me like we should just try to leave behind the CDC's CFS research or, drag them along kicking and screaming...jddhttp://money_for_myalgic_meddiately.comnoreply@blogger.comtag:blogger.com,1999:blog-1294356699705810200.post-50406161863943079632011-04-12T16:09:49.659-04:002011-04-12T16:09:49.659-04:00One observation at this time. The CFS researchers,...One observation at this time. The CFS researchers, are, themselves, fragmented. They need a format, a platform WITH NIH scientists to cozy up and to grow the science. As I watched NIH attendees, I believe that this is the first time MANY of them understood the very serious nature of CFS. This understanding does not dent a budget with other priorities, but NIH could conduct a workshop follow up with the scientists, both extramural and intramural for the purpose of scientific cozy, cozy. I do not mean to trivialize this. In any occupation, people form alliances based on human selection of common interests. Why not here? I do not believe that the NIH people are against us. Face to face meetings on building the science could include the CFS SEP review officer as well as other NIH employees. THIS was an introduction. When do our researchers meet? At conferences they spend a bit of time, but then fly off in different directions. CFS science needs a functioning collaborative.pat ferohttps://www.blogger.com/profile/17941819067748608283noreply@blogger.com