#MEAction recently launched as an online platform to help anyone become an advocate. Now we are announcing our own advocacy action: A quick-strike lobbying campaign this August to spur the US Congress to vastly increase research funding for ME/CFS at the National Institutes of Health. We launched this effort to capitalize on the 21st Century
“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.”
The UK’s National Institute for Health Research (NIHR) is asking for suggestions from patients, carers and members of the public for tests and treatments that need to be researched.
Cort Johnson has a fascinating new post up about the rise and fall of Fibromyalgia funding over the last fifteen years – even less is spent per patient on Fibromyalgia research than ME and CFS. He thinks in the issue is an “advocacy gap”: As funding for pain research increased, funding for FM research, however, has
How ACT UP Lobbied Washington JEN: One of the things I wanted to ask you about, there were a couple of sort of key steps that activists took in Washington and I’m sure that there were others but that sort of came up in the film and one of them was sort of expanding patient representation
ACT UP’s Unique Resources JEN: What were some of the latent resources that you all had, both within the gay community and within ACT UP in those early days that helped to make the movement a success? And what, if anything, do you think can translate to health movements today? PETER: Right. Well, I mean
The Inside/Outside Strategy JEN: I have a question here from Emily C. and she asks, I guess before, the Treatment Action Committee eventually split from ACT UP and became TAG. I guess this might apply to slightly before that period, Emily C asks, “Watching the film, it seems there was a tipping point where TAG
What were ACT UP’s protest tactics? JEN: I liked the language that you used when you were talking about, in particular, the importance of crafting a narrative and also creating an image for media. And one of the things that I noticed looking at some of that news footage was how at many of these
Why civil disobedience? JEN: So I want to sort of, invoke for a moment, that young man in his mid to late twenties, who was lying down on Wall Street and getting arrested and climbing up buildings, climbing up the walls of the FDA and the NIH and unfurling banners, and doing all of that
“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
