Support the Fight for M.E. Equality
Team Member: Kristen Perrine
Jen Brea wrote -
Fight for research and medical treatment. Fight for the #MillionsMissing
For decades, patients living with Myalgic Encephalomyelitis (ME), commonly called Chronic Fatigue Syndrome, have been pushed to the margins of medicine, without equal access to treatment or research.
But all around the world, we've come together to say ENOUGH! We've fought PACE, we've fought bad medical guidelines around the world, we've fought for research funding and the end of forced institutionalization, we've fought to end the stigma and the neglect.
In the last year, #MEAction, a global network of patient activists and allies has:
- Launched the worldwide protest #MillionsMissing to raise awareness and demand better clinician training, better-funded research, and government oversight for ME.
The May protest comprised 12 cities and led to a meeting with the Assistant Secretary for Health and Human Services, Karen DeSalvo and government officials around the world. The September event has nearly doubled in size!
- Spearheaded a petition to release the controversial PACE trial data, garnering over 12,000 signatures. This was presented in the recent UK FOI request to release PACE data as evidence of peaceful patient involvement
- Created a framework to support advocates speaking to members of the US House and Senate
- Crafted and promoted a survey with responses from over 1,800 stakeholders and summarized the findings into a report for the US NIH
- Tirelessly promoted and helped fundraise for biomedical researchers in ME, including Ron Davis, Ian Lipkin, and Mady Hornig
- Continued to provide news, actions, and opinion pieces for the public
Thanks to the hard work of activists around the world, the May 25th #MillionsMissing protest generated press coverage around the world and opportunities to meet with senior officials and discuss our demands for increased research and medical education.
Without you, we never could have achieved so much. I believe together, we can become an unstoppable force. And to grow this movement, we need your help.
Let's get bigger, LOUDER!
OUR GOAL: $80,000
Help hire a PR firm for #MillionsMissing ($9,000)
Help us raise awareness about ME so that it reaches your government, your media, and your clinicians. $9,000 can hire a Washington, D.C.-based PR firm that specializes in grassroots campaigns. The firm will primarily focus on US cities but will provide PR support and media training for all participants.
Build #MillionsMissing and #MEAction
Any funding raised beyond $9,000 will help #MEAction’s advocacy work flourish, and provide vital budgets for local protests.
Give local protest sites around the world the opportunity to:
- Print flyers, signs, and tee shirts
- Award travel stipends to organizers
- Create compelling materials for their protests
Support your tech tools:
- Bluejeans, our videoconferencing tool, allows meetings with up to 100 participants and powers our planning sessions
- Controlshift, which provides the tools used to create petitions and schedule events
Support your staff:
- Help us implement our social media and email strategy
- Give us the manhours to coordinate protests
- Help create our news and actions on meaction.net
We all know how important media attention is, and the cost of negative media attention. Contribute to get a PR firm who can craft a strategy for publicizing the protests widely, and who will fight for the right representation for your illness.
Good works are performed by good people making small changes together: join us in adding your strength and sense of purpose to the fight for ME.
Have questions about our fundraiser? See our FAQ.
What to make an offline, tax-deductible donation? Email firstname.lastname@example.org