Posted by Cort Johnson Discuss this article on the forums I was talking to Dr. Stuart LeGrice of the National Cancer Institute when all of a sudden he said “I don’t think this “What Have You Done For Me Lately” Campaign is helping. I don’t need to have Dr. Collins call me and ask me what are you doing for
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Business as Usual or A Time for Change? The CFSAC Meeting Begins
Posted by Cort Johnson Discuss this article on the forums Federal officials are again sitting down with CFS physicians, researchers and patient advocates to discuss federal policy. This is the third meeting since XMRV burst on the scene and it’s an important one. (See agenda: https://www.hhs.gov/advcomcfs/meetings/agendas/cfsac20101012_agenda.html ) Day One The Science At first glance the highlight of the meeting appears
ContinueCompadres in Scarcity: the Bottom of the Barrel at the NIH
Posted by Cort Johnson As the CFSAC meeting and our continual quest for real funding gets underway it’s important to understand what kind of disorder the NIH believes CFS is. One way to do that is to look at other disorders they’ve decided are also worthy of little funding. Remember being put in math class as you entered Junior High
ContinueLet’s do it again!
Posted by Cort Johnson Discuss this article on the forums American Express is offering $200,000 to five different charities every three months. People will be able to vote for their favorite charities once a week. The next three-month round of voting starts on Jan. 1, 2011, but they are accepting nominations now. To be eligible, a non-profit organization must be
ContinueInterview with Dr. Lapp – Hopeful About Ampligen’s Approval
Discuss this article on the forums Written by Kelvin Lord To give you an idea how long Chuck Lapp has been serving the CFS/ME community, think about this – Before Steve Jobs invented the Macintosh Computer, Dr. Charles Lapp was contacting the CDC about a mysterious new illness. Dr. Lapp has been treating and specializing in CFS patients for over
ContinueA Conversation for Possibility
Posted by Cort Johnson What is really possible in ME/CFS? We are so embedded in what hasn’t happened, in our dark history – in what hasn’t happened or what did happen that shouldn’t have happened – that we hardly take time to think about the other side of the coin – what’s possible? If we were put aside our history
ContinueChronic Fatigue Sydrome: 10 Things People Misunderstand About This “Fatigue”
Discuss this article on the forums Written by Jody (written for EmpowHER.com https://www.empowher.com/chronic-fatigue-syndrome/content/chronic-fatigue-syndrome-10-things-people-misunderstand-about-fatig) I think we can all agree that Chronic Fatigue Syndrome is a stupid name for an incapacitating illness. I think we can also agree that it is exceedingly misleading to the casual observer. Here are ten things that are often misunderstood about the “fatigue” of Chronic Fatigue
ContinueTai Chi: Meditation in Motion by Jody Smith
Discuss this article on the forums (A recent Fibromyalgia Tai Chi study published in the New England Journal of Medicine found substantial improvements after a 12 week, twice a week trial of Tai Chi. SF 36 scores were moderately increased while Fibromyalgia Impact Test scores (FIQ) dramatically improved indicating increased activity levels. https://pubmed.ncbi.nlm.nih.gov/20818876 They still had fibromyalgia but they felt
ContinueThe Times They Are a Changing – CAA Nominates Distinguished Researchers To CFSAC…
Posted by Cort Johnson Discuss this article on the forums ‘Names’ Step Out – A key, key need for 25 years has been to get distinguished researchers, ‘names’, interested in ME/CFS. We’ve always had good, committed researchers but rarely have we had people who could be counted as ‘opinion-makers’ or leaders. That is changing – quickly. The WPI’s XMRV finding
ContinueDr. Cheney on the XMRV International Workshop
Posted by Cort Johnson Discuss this article on the forums Dr. Cheney gave permission to have his comments on the Workshop posted here. Thanks to Rich for contributing it. Quote: “I attended and was a poster presenter at the recently completed XMRV conference at the NIH. It was fascinating and I took perhaps 30 pages of notes. The bio-political undertones
ContinueNIH Steps Up to the Plate – Pathogen Ace Picked to Lead Major XMRV/CFS Study
Posted by Cort Johnson Discuss this article on the forums Major Study – The NIH tagged Anthony Fauci to oversee a major study on XMRV and CFS. The HEAD of the NIAID (National Institute of Allergy and Infectious Diseases), an Institute with a multi-billion dollar budget, and a major figure in immunology with over 800 citations, Fauci is the biggest
ContinueDr. Peterson and ME/CFS Patients Meet with NIH Officials Prior to XMRV Workshop
Posted by Cort Johnson Discuss this article on the forums (Bob Miller is a long time person with severe ME/CFS who has frequently testified at CFSAC Meetings. Congratulations to Bob for engineering such a startling meeting. ) By Rivka Solomon, with help from Robert Miller Contact: Robert Miller < bobmiller42@msn.com> See Rivka’s Video for Action here On September 7, 2010,
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