It’s been an amazing year in ME advocacy. In countries all around the world, patients are rising up with a new energy (if that’s the right word!) of creativity and collaboration. There is a growing sense that we are living in a moment that is bigger than any one advocate or organization. That we are at the beginnings of a movement.
#MEAction is all about creating the tools and platform to support, empower and amplify that movement.  We are young and want to grow, but need to grow in a way that is sustainable. We will always be a grassroots organization, powered substantially by the hard work of volunteers, but sustainability means having the resources for healthy staff members. Staff members who can develop and maintain our platform and support and coordinate the work of our co-founders and volunteers. In order to do that, we need your help!
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With the work of Beth, Jen, and a small number of ultra-dedicated volunteers, here is what we have achieved since our launch in May 2015:
Amplification

• Through our newsletter and social media channels, we have supported more than 70 actions launched by individual advocates and organizations in multiple countries around the world. We’ve helped fundraise for research, drive audiences to screenings of Forgotten Plague, and started to engage the community in a more democratic form of decision-making.

Direct advocacy

• 21st Century Cures Action: We hired a congressional consultant in DC who, in conjunction with patients and family members, met with staffers for fifteen Senators on the HELP committee to request that ME/CFS be moved to NINDS and that ME/CFS research be increased so it is commensurate with disease burden.

Petitions

• PACE trial petition (translated into seven languages) – over 10,000 signatures!
• Save the Gottfries clinic petition
• Congress: Increase ME/CFS research funding at NIH to $250 million
• UK petition to fund research and educate health professionals
• These are just a few examples (view all petitions)

One Click Politics CDC letter-writing campaign: In collaboration with Solve ME/CFS, 561 letters were written in less than a week to the Congressional staffers about their cuts in the CDC’s ME/CFS research program, resulting in a high level meeting with staffers regarding cuts. This tool is also available for activists in Canada and Australia.
Breaking news stories:

• Ron Davis reveals the reasons NIH gave for rejecting his grant pre-proposal
• Ampligen increases prices by more than 100%
• Cheryl Kitt claims at CFSAC that ME/CFS research applications are low quality
• and many more..

Case studies:

• HIV/AIDS advocacy
• The Dutch Petition

Community organizing:

• The launch of #MEAction groups all around the world
• Google Hangouts with activists in the US, Europe, UK, Ireland (and soon) Australia and Canada
• Joining the suffering the silence campaign for severe ME

 
We plan to do a big push for a healthy operating budget for 2016 after the new year allow us to achieve our dreams of hiring healthy staff, pushing for US Congressional funding, launching multilingual versions of the site, growing MEpedia, launching our fee-free crowdfunding platform, and building a map of ME-friendly healthcare providers around the world.
But in the meantime, we appreciate your support and recognition of the strong start we have made in the six months since launch. This is only the beginning!
 
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