Posted by Cort Johnson The Patient Advocate regularly provides overviews of ME/CFS conferences and events. Here he provides an at times hard-hitting take on the latest Invest in ME Conference. Thanks to the PA for his years of communicating with the ME/CFS Community. Check out his excellent blog here. Here is my report from the Invest in ME conference in
ContinueMonth: May 2010
Learning CFS: the Lerner Antiviral Treatment Trial Succeeds
Posted by Cort Johnson Discuss this article on the forums Quote: Our Clinic has treated hundreds of people who are now living normal lives Background: Dr. Lerner had quite a career before CFS. A check of his research record revealed over five decades of infectious disease work focusing on Coxsackie virus, herpes simplex virus, pseudomonas, interferon, Staphylococcus, Mycoplasma, enteroviruses, myocarditis,
ContinueXMRV Is…..Is……Is…..There!
Posted by Cort Johnson XMRV is…is…..is….There! – Yes, someone actually found XMRV. (gasp!). They weren’t looking for it in the blood or in the prostate tissue or in CFS patients and no, it wasn’t a US Lab that found it, it was a German lab remarkably enough but after months of no positive results it was remarkable finding…XMRV appears to
ContinueDr. Coffin on XMRV
Posted by Cort Johnson The crew at the Phoenix Rising Forums has been busy. Rrrr – went so far as to snag Dr. Coffin, one at the top retrovirologists in the country, and ask him some questions about XMRV. Tracking XMRV Down – What is he and Tufts University doing on XRMV? – Dr. Coffin is looking far, and has
ContinueTo blue skies…and far away places.
Discuss this article on the forums Written by The Spitfire [attach]2558[/attach] I thought I would follow up, with where things are at, after such a downward spiral last week. Thank you to all who reached out, private messaged me and so forth. I know it may seem inappropriate to talk about menstrual cycles since there are so many men on
ContinueBorn to Run: NJCFSA Rocks New Jersey
Posted by Cort Johnson Discuss this article on the forums Most states don’t have a statewide CFS organization let alone one that puts on conferences, writes comprehensive CFS manuals, provides high school and college scholarships, advises school on pediatric issues and more. In short, the ME/CFS patients in New Jersey have somehow managed to create a viable, proactive organization that
ContinueI Swear, It’s Nothing Personal!
Discuss this article on the forums Written by Kelvin Lord “My mild-mannered, sweet, school-teacher wife just lit into me with some language that would make a sailor blush!” R.S. said, shaking his head in dismay. He was referring to his wife Leona, a fellow patient here at the clinic getting Ampligen, and he was beside himself, still stinging from the
ContinueThe CFSAC on Itself, XMRV, the CDC and More
Posted by Cort Johnson The main subject – the CFSAC Charter was not the most enthralling subject – but it is a critical topic if the Committee is going to make a difference and Dr. Wanda Jones should be congratulated for thinking strategically and devoting time to trying to get the Committee on more solid ground. Dr. Koh Arrives –
ContinueDr. Mikovits at the IACFS/ME
Posted by Cort Johnson The IACFS/ME did a very interesting thing by inviting Dr. Mikovits to answer questions from their members. Dr. Mikovits must have known she was going to get some tough questions and she did. The Tricky Immune System – The first question illuminated what a complex process tinkering with the immune system is. Andrew Bokelman essentially asked
ContinueGrading Ampligen – A Mid Term Report Card (Ampligen Chronicles)
Discuss this article on the forums Written by Kelvin Lord I never liked report cards as a student, but since today marks the completion of 14 weeks on Ampligen, signifying that I’ve just passed the quarter-mile mark, I thought I’d give you an update on my progress, by way of some mid-term grades. After having 28 infusions of this amazing
ContinueNot So Fine After All: the FINE Trial Crashes to Earth
Posted by Cort Johnson A million and a half dollars, two hundred fifty patients and seven years later the UK government’s best hope for locking in its twisted approach to ME/CFS permanently, fell to earth with a crash. UK ME/CFS patients, certainly aren’t out of the woods, but they can breathe a sigh of relief that they dodged a massive
ContinueHow to Answer “What’s Wrong With You?”
Discuss this article on the forums Written by Kelvin Lord We’ve all heard the question in one form or another. It usually comes at a time when you look better than usual, or feel worse than usual. But either way, it makes you feel the same as usual. “What exactly is wrong with you?” they ask, innocently…not knowing that their
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