A total of 55 members of Congress have signed on to a letter asking NIH Director Francis Collins: 1) to consider in a timely manner the input received through the NIH Request for Information, and 2) to update Congress on the NIH’s plans for ME/CFS research through 2018. The letter was co-sponsored by Rep. Zoe Lofgren (D-CA) and Rep. Anna G. Eshoo (D-CA).
These signatures came as part of a massive outreach effort spearheaded by #MEAction’s congressional team and scores of #MEAction volunteers across the country, in collaboration with the Solve ME/CFS Initiative and dozens of independent advocates. This letter to the NIH for our disease received bipartisan support and is the largest ME/CFS effort ever of its kind.
Thank you to everyone who reached out to their representatives and made this grassroots action possible. We continue to be amazed and inspired by what we can achieve when we work together.
This is only the beginning. Thanks to the leadership of a team of volunteers, #MEAction has built up a network of trained volunteers and constituents with the capacity to coordinate large-scale legislative outreach; a set of relationships with Congressional representatives and staff who want to support ME/CFS patients; a Congressional database of contacts, meetings, actions, and other data points relevant to our disease; and a series of tools and informational materials to enable even severe patients to make their voices heard.
And, thanks to your support, our new PR team has issued a press release to inform the media of this groundswell of Congressional support.
You can help us keep the momentum going. Email [email protected] to learn more about how you can get involved in Congressional outreach. To help us go even farther, support our crowdfunding campaign.
Read the Congressional letter by clicking below.
[button_color url=”http://meaction.net/wp-content/uploads/2015/04/Letter-from-CongressSep2016.pdf” content=”Letter to NIH Director Francis Collins” target=””]
#MEAction UK will be sending a representative to the NICE roundtable discussion on the final ME/CFS guideline, and have had a pre-meeting with NICE to raise our concerns about the delay to publication.