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Showing 6 reactions

  • Joni Elliott
    followed this page 2016-11-08 14:42:07 -0500
  • Mary Ann Kindel
    commented 2016-11-05 17:08:10 -0400
    Couple of suggestions – go to the Phoenix Rising forum and ask there. Go to the Institute for Functional Medicine and search their practitioner list – Consider that you may have heavy metal toxicity – check out Andy Cutler Chelation Think Tank on Facebook. They can help you figure out if you may be a candidate. Mercury, lead and arsenic can all kill your energy. If you decide to chelate, I don’t suggest doing other types of chelation as they can make you worse.
  • Jay Allen
    commented 2016-11-05 16:19:14 -0400
    I have deabilitating fatique but need to find a doctor that understands this problem. Does anyone out there know of a doctor in Northern Virginia?
  • WillyandAriane Arnold
    commented 2016-06-06 01:03:31 -0400
    Trying to understand why the government agencies have put so much obstacles, to dismissed , to oscure , to put aside in dark this cronic illness that has suffering millions of people, it’s more than clear to me that there is an underlaying cause, there is a virus there’s is a retrovirus something that people with me/Cfs acquire at some point in their life either sexual transmitted, blood or direct line from their parents at born, that starts debilitaring their immune system to a point were getting any other illness triggers Cfs any new virus, bacteria, anythig that in healthy individual will have mild or none effect , in me/ cfs are fatal like CMV , EBV , and others that we see reactivating in most people with the illness , do to their poor immune system, after a carefull research all this months it seems more than clear to me for many reasons that some kind of ( unknow) virus or retrovirus ,, like HTLV-1,, HIV,, one that its not any of this two is responsable for this inmune disfuntion thar trigger me/ CFS ,,or maybe its know by those that have turn their head to the other side and obscure and depleted and missed leaded this cronic illness for many years,, Many years ago Many scientifics found association with a retrovirus XMRV,, not one or two but many scientifics, Doctors, ME experts and especialista and out of the suden one more time goverment institutions dismissed, as the possible cause like they have done so Many times is so many other different ways, saying the test were continated and they never come Out with a New test this was 2012,, why there is not test for xmrv?? Or MLV,,WHY IF THERE IS NOT MLV VIRUS IN BLOOD OR AMONG HUMANS NOW THE BLOOD BANKS USE A FILTER FOR MLV VIRUSES?If there is aveilable test in comercial labs for everything regardless if they cause or not a particular illness,,xmrv From MLV familiy( lukemia family can couse all this Neurological immune disorders as we can see in HTLV-1 is a lukemia family virus debilitating etc,, so why there is no test for XMRV maybe the answere is thesame as why cdc and Many other goverment institutions have never pointed to this cronic seldom fatal illness as they do treat HIV,, with community awareness and all kind of resourses,,and many other less suffering illness ,ITS MORE THAT CLEAR THIS IS BECOMING EPIDEMIC , EVERY DAY THERE IS MORE AND MORE PEOPLE DIAGNOSTED WITH ME//CFS and FIBROMILAGIA( that half o them aré me/CFS .. That do to the poor understanding of this illness by phycitians they miseed DIAGNOSTED THEM WITH FM, THERE IS MILLIONS,, NOT 1 OR 2 BUT MILLIONS WITH ME/CFS IN UNITED STATES AND MILLIONS MORE OUT THERE WITH THE UNKNOW VIRUS OR UNDERLAYING CAUSE OF THIS ILNESS WAITING TO GET AN EBV, OR CMV TO BECOME CRONICLY ILL,, IN THE LAST FEW YEARS THE NUMBER OF ME/CFS,, FYBROMILAGIA HAVE INCREASE DRAMÁTICLY!!! THIS IS THE TIME FOR THE GOVERMENT TO REALLY PUT ASIDE ANYTHING THAT THEY DID WRONG IN THE PAST OR HAVENT DONE RIGHT, AND THINK ABOUT THE MILLIONS OF AMERICANS SUFFERING AND THE MANY MILLIONS THAT CAN SUFFER THESAME FAITH!! WHAT DO WE NEED FOR THIS TO HAPPEN? THAT THE NEXT THING WE KNOW THERE IS 30-40 MILLION AMERICANS WITH THIS ILLNESS? OR THAT THE SON OR DAUGTHER OR A FAMILY MEMBER OF A PRESIDENTE OR A SENATOR BECOME CRONICLY ILL FOR THIS MISTERY TO BE SOLVE??? !!!!! WE LIVE IN THE GREATES AND MOST POWERFULL NATION OF THE WORLD !!! IM 100% SURE THAT IF SOME HAS THE POWER, THE RESOURSES AND EVERYTHING TO FIND OUT THE CAUSE IF THIS TERRIBLE ILLNESS AND FIND FUTURE TREATMENTS AND PREVENTION BEFORE THIS BECOMES AN EPIDEMIC WORTH THAT WHAT AIDS WAS BACK IN THE DAYS…WE ALL HAVE TO RAISE OUR HANDS OUR VOICES AND ASK THE GOVERMENT TO TAKE REAL ACTION BEFORE IS TO LATE AND MANY MORE MILLIONS SUFFER THESAME FAITH!!!!
  • Kayeren Cannell
    followed this page 2015-03-05 05:17:17 -0500
  • Kayeren Cannell
    commented 2015-03-04 19:32:35 -0500
    Whether it be positive, or on the downside (see review I posted on the Facebook page for the Nat’l CFIDS Foundation, in response to “The President’s Message”, by Gail Kansky; The Nat’l Forum, Winter 2014 – 2015—which I did, as it’s highly unlikely Ms. Kansky will publish it in the Forum’s next issue), I’m glad to see CFS/FMS/CFIDS/ME/SEID (pick any one U like the best…everybody else does!) back in the spotlight. With no progress/advancement made on the medical front & most of us has, is, or will consider assisted termination of life (as will I, as my support keeps dwindling down with survival becoming impossible), it’s very easy to “sweep this under the rug” & hope it goes away. I’ve seen this coming because: 1) us afflicted, are going away (see: The Memorial List [a word of caution: it will shake you to the very core & forever profoundly change you] of names of those who’ve perished); 2) those of us still alive are too weak & don’t have any energy to speak-out or lead any causes—this very illness assures that by keeping us bed-bound & barely able to speak; and, 3) this illness/disease/syndrome is UNPOPULAR…and WE ALL know what that means! Unpopular with doctors, so there goes credibility out the door, so, of course, EVERYBODY knows what we really have: it’s the “it’s-all-in-UR-head-pull-yourself-up-by-the-bootstraps-get-off-the-couch-and-get-a-job-like-everybody-else syndrome”. Wow! Finally, a diagnosis. Now, if they make a pill for that, I can have my life back!!! The trickle-down effect, of course, from the medical community’s dismissal is unparralled: politicians won’t support the cause; gov’t won’t fund research; pharmaceutical co’s see no profit in spending any money on it…etc., etc. Speaking only for myself, I’D RATHER HAVE EBOLA! Hey, that’s on a faster track than the space shuttle—in terms of a cure, that is. And why? Because IT’S POPULAR! I am very surprised to see this in the news again. Although too late for us old-timers, maybe the younger generation won’t have to go through this nightmare with a scenario the likes of Stephen King couldn’t conger up!