The Use of Patient Blogs as a Care Resource Thanks to Greg Crowhurst for his incredibly kind review of my presentation on his blog and for giving permission for me to share his review on the #MEAction site: “My heart goes out to anyone newly diagnosed with “ME”, Myalgic Encephalomyelitis, for you are instantly thrown
The US National Institutes of Health (NIH) has awarded a total of $1.3 million for ME research to three teams led by Drs. Ian Lipkin and Mady Hornig, Nancy Klimas and Maureen Hanson, respectively. In an unexpected move, the NIH gave $766,000 to Drs. Ian Lipkin and Mady Hornig and their team at the Center
“Scientists are reporting the first clear evidence that muscle cells distribute energy primarily by the rapid conduction of electrical charges through a vast, interconnected network of mitochondria — the cell’s “powerhouse” — in a way that resembles the wire grid that distributes power throughout a city.”
Jennie Spotila is an ME/CFS patient and advocate who has done extensive research on government funding for CFS. She recently discovered that the latest Senate committee report for CDC appropriations appears to recommend completely defunding CFS research. She points out that the cut is not a done deal as the House and Senate need to
The situation for people with ME in Wales is extremely difficult. This is because there is no Specialist Care for people and the GPs do not have any training about the condition during their training. It is left up to them to find out about the condition if they need to or want to. Therefore
“What makes activism work is [patients’] anger and fear…somehow you have to be able to capture that, put it in a bottle and bottle it and use it.” Larry Kramer The following comes from a report produced by HCM strategists, a public policy advocacy consulting firm: “Back to Basics: HIV/AIDS as a Model for Catalyzing Change.” What
Compare real sufferers of FM, CFS and MCS to models who ‘portray’ these illnesses for magazines and articles on the net is very easy (and sad)
Contact your Congressional Delegation – Share Llewellyn King’s article and ask them to speak up for ME/CFS Please find your Congressional delegation by typing your zip code, then copy and paste the following text into the contact forms. [button_color url=”http://www.contactingthecongress.org” content=”Contact your Congressional Delegation” target=””] Attention: Legislative Assistant for Health Please read the following article
ME/CFS Illness Management Survey Results “No Decisions about me without me” The ME Association just released the results of a patient survey taken in 2012 that covered management and self-management courses commonly offered to patients with Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, or Post-viral Fatigue Syndrome. The report (available in full on the ME Association website)
