With the help of our community’s ingenuity, strength, and indomitable spirit, #MEAction has:
- Spearheaded a petition to release the PACE trial data, garnering over 12,000 signatures. This was presented in the recent FOI request to release PACE data as evidence of peaceful patient involvement
- Launched the worldwide protest #MillionsMissing in 12 locations to raise awareness and demand better clinician training, better-funded research, and government oversight for ME. This protest led to a meeting with the Assistant Secretary for Health and Human Services, Karen DeSalvo
- 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 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. And to sustain this movement, we need your help.
OUR GOAL:
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.
By raising $9,000 for the PR firm, you can paint a more accurate picture of your illness in the minds of the public — including your physicians and your government representatives.
Build #MillionsMissing and #MEAction (
Any funding raised beyond $9,000 will help #MEAction’s advocacy work flourish, and provide vital budgets for local protests all across the globe.
Give local protest sites 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.
We know how important the #MillionsMissing protests are to ensure that ME stays in the news and is viewed as current and relevant. And we know that #MEAction needs to be funded in order to ensure that events like #MillionsMissing, petitions like the PACE petition, and meetings like the one with DeSalvo continue to happen. #MEAction is an integral and vibrant part of the ME advocacy landscape.
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.
Ready join the #MillionsMissing as a fundraising partner? It’s easy!
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Join us in creating change in the public relations landscape of ME by making a donation:
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Have questions about our fundraiser? See our FAQ.
7 thoughts on “Join the #MillionsMissing fundraising team!”
Do you still have our shoes from the Washington, D.C. protest or will you need us to send shoes again?
It was so great to see Ron, Janet, Linda, Laurel and Carol at the San Francisco protest. Is there any chance that we can get more researchers, clinicians and organizations to join us in September? I’d love to see them in the news coverage of our protests!
Thanks.
Time to contact them, Laurie P!
There is definitely a move this time around to get more physicians, clinicians, and scientists at the rallies this time. Congressional aides, too! We’ve heard that a lot of gov’t officials generally send someone to marathons, fundraisers, and so on, and we should let them all know about the protest.
That works best when local protesters contact local folk. I will carry your message back to the team so that we can ask people to do this in a directed way, but it is something that will require individual as well as group efforts, like the current Congressional push. 🙂
And we do still have previous shoes… but the more the merrier. A large number of shoes makes a dramatic statement.
Jaime
This is very exciting! Thank you so much.
Thank you, Laurie!
Is there any way to donate specifically to support Australian actions similar to this?
From what I can understand, the current fundraising push is mainly for the US, with leftovers to be distributed around other parts of the world to be used for demonstrations, but without the essential local PR coordination and publicity needed to make them really effective.
Of course increased recognition and research funding anywhere in the world has the potential to help us all eventually, but I’m just desperate to wake up the authorities in Australia here and now to the shocking neglect and denial Australians with ME have been suffering for so long.
I also want Australian newspapers to be alerted to the deceptive/fraudulent nature of the British PACE trial results so they’ll stop publishing misleading, dangerous and demeaning-to-severely-ill-patients articles implying that exercise and CBT is an effective and safe way to recover from ME. When I’ve told them that’s what they’re doing, they just moderate out my comments (I’m looking at you, Guardian!).
It’s a really good idea to run a separate fundraiser for Australian efforts, Elizabeth! And we encourage every country to do the same. PR teams need to understand the local issues well, and a D.C.-based firm would probably not be best for Australia.
After hiring the PR firm, though, when it comes to the local protest cities, every site is going to get the same funding consideration, regardless of country.
Yes, our DC firm is going to be stronger in the US than in other parts of the world, but they are pitching to all anglophone markets. So this firm *will* be pitching the Melbourne protest to Australian press. I firmly believe we need to pool our resources. Moreover, the majority of the fundraiser is to support #MEAction’s ongoing work all over the world. We need to keep our website running, keep our content flowing, and support the staff that help to coordinate and communicate this global effort.
Without your support, #MEAction would not exist. And to keep thriving, we need your help.
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