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#MEAction’s Values & Policy Initiative

Why we are undertaking this initiative: 

#MEAction’s community-based model utilizes the strengths of our staff team to support, organize and amplify the voices of thousands of volunteers, activists, people with ME, and allies around the world. As such, we’ve always been a big tent: many of our volunteers and activists hold differing viewpoints re: what tactics we should use, what policy outcomes we should fight for, and what values should guide us.

#MEAction has grown so much over the past three years, having ever greater impact. Now is the time to come together, discuss, debate and make explicit our values and policies so that the hundreds of volunteers and activists of #MEAction can all work even better together.

Clarifying #MEAction’s values and policies is critical for the outward-facing work: engaging our elected officials, educating medical professionals, and communicating with the media. It’s also critical for building a movement that is inclusive and representative of our community’s diverse needs, perspectives, and experiences. Our goal is to add clarity to all areas of our work and for the entire community to understand #MEAction’s values and policies. 

We are engaging in a community-based process in order to:

  • Build the community’s sense of clarity, transparency and trust in the organization.
  • Educate the community with insights from clinicians and researchers.
  • Find clarity on controversial issue around which we don’t have a clear mandate, e.g., clinical and research definitions.
  • Make explicit our values on important issues that get overlooked and not discussed, e.g. underserved populations, racial inequalities, and how to create a community that is inclusive of all demographics of people with ME. 
  • Create the mandate and momentum to move an advocacy agenda forward.

How we are undertaking this initiative:

Who can participate?

Everyone in our community can participate! Are you in an #MEAction group? Do you follow our email list or social media? Have you signed a petition? However you are involved, big or small, you are a part of our community of people with ME, caregivers, and allies.

What the initiative will look like
  1. Survey the community: Our first step was to deploy a survey to solicit community input on topics you feel should be put on the agenda for community discussion. We did this last November, 2018 . Read an article about the survey results here.
  2. Community discussion: Over the next several months, we will release editorials and surveys written by a variety of voices on topics the community indicated it wanted to explore based on feedback from the Values & Policy survey, conducted at the end of 2018. We will discuss these topics and the accompanying editorials and surveys in the comments, on forums, on social media, and through a series of Bluejeans conversations. (Scroll down to the bottom to see published editorials/surveys.)
  3. Survey: Following community discussion and calls, we will survey the community on key questions emerging from these discussions that will provide additional input for committees/affiliates who will be writing the platforms.
  4. – Draft Statement of Values: The survey will be used to inform a statement of core values and tactics, drafted by staff, with country affiliates providing feedback. The entire network will be guided by this statement of values and tactics.
    – Draft Platform of Policy Positions: National affiliates (e.g., #MEAction USA, #MEAction UK, #MEAction Scotland) will develop their position platforms, informed by the community survey. This process and outcomes may differ by country.
  5. Community call to discuss drafted platforms and values.
  6. Adoption of Values & Policies: The community will ratify the statement of values and platform of policy positions with an up or down vote. Our policy positions may vary from country to country, depending on national context.

Timeline and Topics: 

Timeline for the release of editorial topics, subsequent discussion and community calls, a final survey and vote. 

VALUES and TACTICS: (September / October)

We will publish a series of articles on topics related to community values and advocacy tactics.

Week of Sept. 30th – Oct. 4th

    • PARTICIPATORY ACTIVISM: Why we must build a grassroots movement that is inclusive. | Author: Sian L.
    • CIVIL DISAGREEMENT & RESPECT: Why these are essential to the ME movement | Author: Jenny Horner
    • INSIDE/OUTSIDE ACTIVISM: Why we must shout in the streets and sit at the table. | Author: Jim Eigo (ACT UP Activist)

Week of Oct. 7-11th

    • BUILDING COALITIONS: Why we need them to strengthen our movement. | Author: Bobbi Ausubel
    • ACCESSIBILITY & ABLEISM: How does ME fit into the Disabled People’s Movement? | Author: Jenny Horner

Week of Oct. 14-18

    • Race, Ethnicity and M.E.: Why We Need to Build a More Inclusive Movement and Why it Matters. | Author: Wilhelmina Jenkins.  

Oct. 30th  

POSITIONS: (November/December)

We will publish a series of articles on topics related to policy positions:

December, 2019

    • DIAGNOSTIC CRITERIA: What are they and what are common misconceptions. | Author: MEAction/Jaime Seltzer
    • VOICE OF CLINICIANS and RESEARCHERS: Article summarizing clinician survey and researcher survey on definitions. | Author: MEAction/Jaime Seltzer

January, 2020

  • COMMUNITY SURVEY: We will deploy another community survey to get feedback on values, tactics, and positions, following our our conversations above. 
  • DRAFT STATEMENT OF VALUES: The survey will be used to inform a statement of core values and tactics, drafted by staff, with country affiliates providing feedback. The entire network will be guided by this statement of values and tactics.
  • DRAFT PLATFORM OF POLICY POSITIONS: National affiliates (e.g., #MEAction USA, #MEAction UK, #MEAction Scotland) will develop their position platforms, informed by the community survey. This process and outcomes may differ by country.

February, 2020

  • COMMUNITY CALL: We’ll hold community calls about the statement of values and policy platform.

March, 2020

  • VOTE: The community will ratify the statement of values and platform of policy positions with an up or down vote.

Questions, concerns or feedback? Email info@meaction.net

PUBLISHED EDITORIALS / SURVEYS 

Diagnostic Criteria: Researchers and Clinicians Survey Results

Last month, we presented information about the diagnostic criteria, exploring their similarities and differences. Click here to read that article. This week, we’re reporting on a survey we sent to ME-literate researchers and clinicians.  We contacted clinicians who treat or have … Continue reading

12 comments

Demystifying the Diagnostic Criteria for ME and Related disease

  Additions and corrections Initially we stated that ICC requires three months before diagnosis; this was in error. ICC specifies that the disease can be diagnosed immediately. This has been corrected in the text and within the pdf comparing criteria. … Continue reading

53 comments

Race, Ethnicity and M.E.: Why We Need to Build a More Inclusive Movement and Why it Matters.

Values & Policy Initiative Learn more This article is part of our Values & Policy Initiative, a six-month long process for the community to come together to learn and discuss our core values, tactics and positions so that we are more unified in … Continue reading

6 comments

Are you Disabled? How does ME fit into the Disabled People’s Movement?

Values & Policy Initiative Learn more This article is part of our Values & Policy Initiative, a six-month long process for the community to come together to learn and discuss our core values, tactics and positions so that we are more unified in … Continue reading

15 comments

Why We Must Build Coalitions to Strengthen our Movement

Values & Policy Initiative Learn more This article is part of our Values & Policy Initiative, a six-month long process for the community to come together to learn and discuss our core values, tactics and positions so that we are more unified in … Continue reading

0 comments

Inside / Outside Activism: Why We Must Shout in the Streets and Sit at the Table.

Values & Policy Initiative Learn more This article is part of our Values & Policy Initiative, a six-month long process for the community to come together to learn and discuss our core values, tactics and positions so that we are more unified in … Continue reading

3 comments

Why Civil Disagreement and Respect are Essential to the ME Movement

VALUES & POLICY INITIATIVE Learn more This article is part of our Values & Policy Initiative, a six-month long process for the community to come together to learn and discuss our core values, tactics and positions so that we are more unified in … Continue reading

1 comment

Why We Must Build an Open, Grassroots Movement

Listen to the article:  Values & Policy Initiative Learn more This article is part of our Values & Policy Initiative, a six-month long process for the community to come together to learn and discuss our core values, tactics and positions so that … Continue reading

3 comments

Join Our Values and Policy Initiative

Listen to the article:   On behalf of #MEAction International’s board, staff, volunteers and everyone who form a part of our wider community, I want to welcome and invite you to participate in what we are calling “Values and Policy,” … Continue reading

1 comment

Values & Policy: Outcome of our November Poll

Listen to the article:   #MEAction’s Values & Policy initiative has evolved out of the need to better clarify our values, tactics and positions so that we are more unified in our work as a large, diverse community.  As a … Continue reading

2 comments