On February 3, 2016, a group of patient organizations and advocates (including #MEAction) sent a followup letter to the Agency for Healthcare Research and Quality (AHRQ) further detailing concerns with the 2015 AHRQ Evidence Review and reiterating their request, originally made in November 2015, to reanalyze the conclusions of AHRQ’s Evidence Review in light of
The DHHS response is disappointing. The NIH’s continuing reluctance to produce and RFA – the one thing we know will spark interest in ME/CFS – is nothing if not baffling. Francis Collins promises are, at least at this point, ringing hollow.
Help us build a powerful, participatory voice for change in Washington #MEAction is thrilled to announce that we are coming together with over twenty organizations, bloggers, and independent advocates to form a US Action Working Group. We aim to create a powerful, participatory voice for change in Congress, across our federal agencies, and in medicine. Read the
Have you always wanted to email your Congressmen/ women about ME/CFS but don’t know what to say? Or maybe you’re too sick to draft a letter? We’ve made it easy! Just go to the listed website and copy and paste the sample letter!
In a budget agreement announced early Wednesday morning, funding for the US Centers for Disease Control’s (CDC) ME/CFS program was restored to the full $5.4 million. The omnibus budget bill is expected to pass both houses on Friday. CDC funding for ME/CFS had previously been cut to $0 in the proposed 2016 budget. [pullquote align=”right” cite=”” link=”” color=”” class=””
#MEAction has just launched a major new petition to get the US Department of Health and Human Services (HHS) to throw its considerable weight behind calls to The Lancet to have the notorious PACE trial independently re-analysed. The petition also asks the HHS to take immediate steps to protect ME/CFS patients both in the US
CFSAC- Let’s Take Action ME community members were caught off guard when the proposed 2016 Senate appropriations bill zeroed out CDC funding for CFS research. Several advocates scrambled to address this and their efforts to be heard appear to have paid off. But scrambling is not something ME advocates can, or should do. Health- and resource-
USA’s CFS Advisory Committee wants bigger research, aimed at finding diagnostic tests, using Canadian Consensus Criteria and private-public partnerships to find drug treatments. It asks for $250 million annually, estimating ME/CFS costs the US up to $24 billion.
Use the easy one click letter to send Llewellyn King’s article in the Congress Blog looking for a congressional representative to take on the campaign for ME.
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
