tag:blogger.com,1999:blog-1345573145957924958.post7638601189143439495..comments2024-03-13T09:08:55.969-07:00Comments on Slightly Alive: CFSAC testimony: CDC must end use of toolkit and the Reeves "empirical" definitionMary Schweitzerhttp://www.blogger.com/profile/11583106682242141031noreply@blogger.comBlogger11125tag:blogger.com,1999:blog-1345573145957924958.post-52860136579041800342022-09-21T13:34:01.392-07:002022-09-21T13:34:01.392-07:00hi mary ampligen also helps with fatiguehi mary ampligen also helps with fatigueAlexhttps://www.blogger.com/profile/05281590238456213469noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-90499035051507847252012-09-18T14:43:35.095-07:002012-09-18T14:43:35.095-07:00I was lucky. Within weeks of my diagnosis, I was ...I was lucky. Within weeks of my diagnosis, I was referred to a really good specialist in Washington, Marsha Wallace. Unfortunately, she no longer practices. But she knew Dharam Ablashi personally, and knew he was looking for patients to test for HHV-6, Variant A, which he had discovered in AIDS patients while working at NIH. So he tested me and would continue to until he retired. There are commercial labs that test for it - the HHV-6 Foundation has the addresses of some at it's website, <br />http://www.hhv-6foundation.org<br /><br />I heard Dr. Robert Suhadionik give a presentation on the abnormal Rnase-L among patients in the Tahoe CFS cluster outbreak, and it made so much sense I wanted to be tested too. I had to wait for a commercial lab, and when that appeared in 1998 (Redlabs in Belgium), Dr. Wallace and Dr. Ablashi helped me get tested there. After 9/11 we were forbidden to send blood overseas (don't ask me why), so we had to wait for the establishment of Redlabs USA in Reno to get the test again. And pay cash. But I paid cash and got the tests. Unfortunately, I don't think you can get the test in the US right now.<br /><br />It made sense to do this because both HHV-6 and the 37kDa Rnase-L were predictive of improvement on Ampligen. If I was going to spend so much money on Ampligen, I wanted a biomarker. Even if I had to pay for it. And I got two, and both worked.<br /><br />Later I became a patient of Dr. Dan Peterson, going out to Tahoe once a year. When I lost Ampligen in Feb 2008 because the head of my practice died, I relapsed in Sept. 2008. Dr. Peterson did a lot of testing on me, some of it covered by insurance or medicare, but some had to be paid by cash. That's how I got the rest of the information, including the knowledge that I had both HHV-6A and CMV in my spinal fluid. <br /><br />For years CDC has ignored - or even derided - the information Dan Peterson has learned from patients in his practice over three decades - but it appears that perhaps the knowledge of long-term clinicians like Peterson, Klimas, Enlander, Bateman, Komaroff, Levine, Montoya - will get used. I sure hope so.<br /><br />BTW, the Wisconsin ME and CFS Association is really good - they may be able to help you find a local GP willing to work with a doctor from a distance. If they can't, I know they will help you with emotional and social support. Their website is:<br />http://www.wicfs-me.org<br /><br />MaryMary Schweitzerhttps://www.blogger.com/profile/11583106682242141031noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-17925515467793501122012-09-18T01:19:12.123-07:002012-09-18T01:19:12.123-07:00I was just listening in on the YouTube advisory me...I was just listening in on the YouTube advisory meeting held this summer. I am sick 12 + years and basically sitting quiet while docs mismanage this illness/disease and the government agencies add another year of nothing to my life (and that of so many others). As there is not other place to contact you Mary, can you tell me how you got a doc to measure your insufficiencies and viral content in your blood/tissue? My docs have done NONE of this testing...other than the normal blood panels and other heart related testing, brain imaging, etc. Nothing. I am sick at LEAST 12 years and as long as 30 and no real "proof" of this disease in testing other than low level of certain white blood cells and some cardiac arhythmias (sp?), and some thyroid issues as well. I live in Wisconsin and just wondered in all your testing, are there ME/CFS specialists to see that will do more? I have been left to my own device for all these years, as I know many others have. I am ashamed of my country's blatant disregard for other's lives...especially the young ones who acquire this disease and if they do nothing soon, have no chance at seeing "normal' living.<br /><br />Thank you so much to all of you who have testified or given credence to our plea for help.<br /><br />EileenAnonymoushttps://www.blogger.com/profile/03709770591864481245noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-38324128410765947622012-07-03T11:08:45.739-07:002012-07-03T11:08:45.739-07:00Mary,
You consistently Lean In, as Sheryl Sandberg...Mary,<br />You consistently Lean In, as Sheryl Sandberg says in an entirely different context. You lean in and take on the challenging work, and we appreciate you so for it. Thank you.<br />Pam LairdPamhttps://www.blogger.com/profile/11194995457948789571noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-1831161858204428302012-06-16T04:00:03.401-07:002012-06-16T04:00:03.401-07:00Thankyou..great stuff Mary :)Thankyou..great stuff Mary :)Lilpinkhttps://www.blogger.com/profile/11480603897401811321noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-73970387694109284942012-06-15T21:40:16.856-07:002012-06-15T21:40:16.856-07:00IMO "mysterious" accurately identifies o...IMO "mysterious" accurately identifies one of the most important ways some of the denialists achieve their goals.<br /><br />Making a known disease seem mysterious is an act of extreme denigration in their hands.<br /><br />===<br /><br />It is designed, as with everything else they do concerning these diseases, to delay all progress.Samuel Waleshttps://www.blogger.com/profile/11141951571229527898noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-2393487441456837992012-06-15T20:49:40.075-07:002012-06-15T20:49:40.075-07:00This comment has been removed by the author.Samuel Waleshttps://www.blogger.com/profile/11141951571229527898noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-87563449659943590582012-06-15T13:21:09.556-07:002012-06-15T13:21:09.556-07:00This together with Rik Carlson's VT CFIDS spee...This together with Rik Carlson's VT CFIDS speech is dead on. Insurance is but one undue influence slowing the train. I'll believe CDC retires its crap when I can no longer read it. If Dr. Unger is the "concerned" "pathologist" Dr. Vernon would portray her as, she is more than compromised as a game player, and that compromises Dr. Vernon a lot of others. <br /><br />cdc.gov is for physicians and the public. In our case, CDC has chosen to misdirect both by hiding 25+ years of evidence and counting, to control the pace of the game and make it appear they're pulling lead, as Dr. Reeves made such efforts to show in his last public testimony. There is simply no need for another CDC primer telling current or future doctors what diagnoses to exclude. <br /><br />P.J. Langhoff has written her concern in regards to Lyme (Baker's Dozen), that science officially ignored today will be the future's newly discovered truth, either once the disease is simply too costly to gloss over, and/or certain parties are safe and set to profit as planned. One can sense the same happening with "CFS."Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-69044473480436470442012-06-14T18:28:05.590-07:002012-06-14T18:28:05.590-07:00Thank you Sick in the South ... I didn't go th...Thank you Sick in the South ... I didn't go this time because there was little notice and too much going on with my family's and my health care - I testified over the phone.Mary Schweitzerhttps://www.blogger.com/profile/11583106682242141031noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-2660578623651307802012-06-14T09:20:57.869-07:002012-06-14T09:20:57.869-07:00Thanks for representing us so well, Mary. Hope thi...Thanks for representing us so well, Mary. Hope this trip didn't set you back too badly.Sick In theSouthhttps://www.blogger.com/profile/03955749886183134196noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-76229612955300355162012-06-13T18:12:30.665-07:002012-06-13T18:12:30.665-07:00Bravo, Mary. Right on the mark, as usual. Thank yo...Bravo, Mary. Right on the mark, as usual. Thank you for representing us so well.FedUphttps://www.blogger.com/profile/02923529773900646279noreply@blogger.com