USA: News from #MEAction

#MEAction has announced an official membership program.

Announcement on twitter (with a short video):
MEAction on twitter said:
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Code: 
https://twitter.com/MEActNet/status/1435634990717538312
More details on website:
#MEAction website said:
#MEAction is excited to announce our official Membership Program! By becoming an #MEAction Member, you will support a thriving community of patients, caregivers, and allies fighting for recognition, education, and research for ME.

Our goal is to have 500 New Members sign-up within the next four weeks. Will you be one of them?
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Membership starts at $5 a month. Free membership is also available to those who can't make a financial contribution:
#MEAction website said:
Membership is available to all. For those who cannot make a monthly financial contribution at this time, we are offering a free membership option. Whether you are a person with ME or a caregiver, we value your participation! All you have to do is select which currency and then on the next page you will be able to select the Free Membership level.
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Merged thread (MEAction funding)

The Ford Foundation today announced the launch of its first-ever grantmaking program focused on advancing the rights of people with disabilities in the United States, with an annual budget of $10 million. From 2018 to 2020, Ford has invested more than $50 million toward projects and organizations focused on disability and an additional $125 million to social justice organizations working toward disability inclusion. The launch of the U.S. Disability Rights program marks the next stage of Ford's sustained commitment to the community and wider efforts to transform the foundation toward disability inclusion in all of its operations and grantmaking.
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Initial investments from the portfolio include grants to:
  • The Century Foundation to build a national disability and economic justice roundtable that will help coordinate a disability agenda in policy arenas;
  • The Disability Rights and Education Defense Fund to build a national association of disabled journalists;
  • Access Living of Chicago to expand work with survivors of gun violence;
  • Crushing Colonialism to use moving image storytelling to uplift Native Americans with disabilities and their advocacy work;
  • MEAction to advocate for the recognition, education, and research around myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) and the emerging long-haul COVID community.
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eta:
https://www.fordfoundation.org/the-...ches-first-ever-us-disability-rights-program/
 
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Sly Saint said:
"The Ford Foundation today announced the launch of its first-ever grantmaking program focused on advancing the rights of people with disabilities in the United States, with an annual budget of $10 million ..."

https://www.uppermichiganssource.co...ches-first-ever-us-disability-rights-program/
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When I clicked that link it didn't seem to match the announcement being discussed. Not sure what happened...

At any rate, here's a link from the Ford Foundation website:

https://www.fordfoundation.org/the-...ches-first-ever-us-disability-rights-program/

I saw a video clip of Rebecca Cokley discussing this yesterday (see tweet in quote below) but I did not realize that one of the grants was for MEAction!

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Webinar: “Double-Edged Sword of Research for BIPOC"
Thursday, Nov. 11th, 5:30-6:30 PM Pacific Time.

Speakers are Jaime Seltzer from MEAction and Leticia Vaca from Urban Health Group Wellness.

Register here: https://www.eventbrite.com/e/double-edged-sword-of-research-for-bipoc-tickets-189318214877

An honest discussion on racism in medical research and what #MEAction is doing for inclusive and mindful research for BIPOC.

About this event

Please join us to learn the history of racism in medical research and #MEAction mindful approach to conducting an ethical and necessary study for better Myalgic encephalomyelitis (ME) or myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)diagnostic practices for BIPOC.
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Edited to add: BIPOC stands for "Black, Indigenous, and People of Color."
 
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I was unsure about the directness of the MEAction campaign, how it's pretty much prescriptive and may be badly received in a "who are you to tell us how to deal with this?" way but see a lot of praise and thanks in hindsight, pretty much for how simple it is. It's not that simple and it's not all of it but this is still the best we have for now, even 18+ months into it.

This is one but frankly I see many regularly. Kudos on this, sometimes it's OK to be bold when you are on the right side of history, even if it irks some at first.

 
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Merged thread

#MEAction: strategic planning survey 2021

from email


We're excited to share that #MEAction is engaged in a strategic planning process facilitated by the Center for Nonprofit Management (CNM) to help us determine our strategic way forward. An initial step in the process is to gain input from YOU, our incredible #MEAction community! Through the anonymous survey at the link below, we would be grateful for your input. It is our goal to understand your knowledge and perceptions of #MEAction’s programs, impact, and future.

This survey is anonymous and should take approximately 10 minutes to complete. Only CNM has access to the responses, and individual answers will not be reported. We are looking for trends and consistent perceptions. Your honesty is truly appreciated!

Take the Survey

deadline Nov 8
 
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Signed. There were questions about donating and I've ran into the same problem at MEAction as I did at other venues that do fundraising for ME, the only option to donate is through creditcard. In the Netherlands we rarely use creditcard. We have our own system called "ideal" which is very handy, but I don't expect foreign organizations to put that on the table as an option for us. Paypal however works too for most Dutch people but is rarely an option too.
 
I probably should have looked through the survey before starting, was OK for the closed questions, but when I got to the open ended questions it was beyond me just now.

As there was not an obvious save option I just dropped out of answering, though hopefully I will come back and restart when my brain is functioning better.
 
Not a complaint but it seemed more like a recruitment and funding campaign than a genuine inquiry about what is important. It's not exceptional in those terms but it is sort of thing that puts me off, though I'd guess the psychology is based on tried and tested methodology.
 
Done, I think it's a worthwhile thing to do and I'm glad MEAction is asking for feedback. It took me longer than 10 minutes too.

Some of what I suggested: I stressed that if it is aiming to be a credible organisation, being effective with influencing government and others, it needs to be careful to be science-based, overly cautious even. Things like being seen to be promoting unproven spinal surgery does a lot of harm, to the organisation and to people with ME/CFS.

I also think that it should focus on being really effective in the US and let organisations in other parts of the world develop their own approach that works in the culture they are in. That said I think the US MEAction can play a part in getting national ME/CFS charities off the ground, especially in the Americas.

A focus on lobbying for US research is very important for all of us - if we have biomarkers, everything else - public recognition, better educated medical professionals, more research - will happen much more easily. I think MEAction should be engaging directly with health insurance companies to ensure they have good information - and explain why they should be investing in ME/CFS research. I think capitalising on the incidence of the ME/CFS that follows Covid-19 should be a high priority. Evidence suggests that much of Long Covid is just one of the many types of ME/CFS.

I think it's good if others share their ideas here, as it can be hard to think of everything you want to say when faced with the blank boxes.
 
Can't remember it all but I said something along the lines of support for local fundraising initiatives. I should've specified better though, because I mean something along the lines of basics that you have to do before you can start fundraising. And does this differ in different countries. I guess there's some licensing involved maybe?
 
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