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#MEAction requests donations

Sasha

Fine, thank you
Messages
17,863
Location
UK
#MEAction has achieved a ton of stuff already with volunteers and, it appears, personal money, but they're asking for donations to get themselves onto a sustainable footing with some healthy staff so they can do more.

I think they've made a fantastic showing already and I'll be donating.

#MEAction said:
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!

DONATE NOW


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

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:

Case studies:

Community organizing:



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!


DONATE NOW


Help us keep going and keep growing. Make a recurring donation today.

Most people don't take the time to donate but if every visitor pledged just $1 per month on a recurring basis, we could fully fund #MEAction.
 

Keela Too

Sally Burch
Messages
900
Location
N.Ireland
I agree. I have donated a something on a recurring donation via Paypal. Jen is doing powerful work I think.

I appreciated the opportunity to talk with her over one of the Google Hangouts - and the news roundups ME Action are doing, along with the hosting of petitions and so on is amazing. Just wish I could get to grips with the forums/groups thing.
 

Yogi

Senior Member
Messages
1,132
I think #MEAction are doing terrific work. They really have punched above their weight. Their website is slick and they are good at public relations. I always was thinking these years it would be good if a global on-line initiative like this could be set up. And now this has been done and we have #MeAction - Thanks!

They say:
"Considering making a recurring donation. If all of our websites visitors donated just $1 every month, every Facebook follower $3, or all of our members, $20, we could fully fund #MEAction."

Like other online upstarts such as ebay, amazon and google they have very low costs due to being online and those online businesses we would all agree have revolutionised the world.

They also have a great sister site #MEPedia. I like their branding - it looks professional. Again I always thought this would be a good idea if someone made this happen and they have made it happen. Currently there is a lot of good nuggets of information but given the growth of the internet it is becoming difficult to keep track of especially for newly diagnosed people. It could also be used by health professionals.

http://me-pedia.org/index.php?title=Main_Page

They have also done a myth buster. I always thought it would be good idea for a global org who are professional do provide factsheets that can be easily passed to journalists when required by us all. I thought we should do this at PR but again #MEAction have done it now.

http://www.meaction.net/2015/12/03/debunking-the-myth-of-the-militant-minority/

http://www.meaction.net/wp-content/uploads/2015/05/MEAction–patient-view-of-the-PACE-Trial-Controversy.pdf

I am too ill to do any of these and it's like they have been reading my mind and have set up these initiatives.

My personal view is that whilst donating to medical research is a worthwhile cause I think initiatives like this with a strong global online presence could pay more large dividends in the short term for the smaller sums (given we are all limited in our finances due to sickness) invested as with good publicity and campaigns and petitions and online professional presence it could unlock funds for research from governments and other wealthy donors by changing the public view.

I just like it when a new org appears to shake things up and bring in new energy!

Thanks a lot #MEAction and @JenB !

I am not involved with MEAction I just think they are doing terrific work!!