Advocacy Round-Up: End-of-Year, 2018

Our community’s advocacy work end with a big finale with our meeting with the director of the U.S. National Institutes of Health (NIH)!  Catch up on the latest global news from the past few months.


woman at protest holds sign that reads, "Dear NIH we may be missing but we do exist!!!"#MEAction representatives met with the National Institutes of Health (NIH) director, Dr. Francis Collins, and other key NIH leaders on December 7th.
The five #MEAction representatives called on the NIH director to take on a position of bold leadership, and to develop a comprehensive, strategic plan for accelerating research with the goal to deliver the first biomarkers and FDA-approved treatments within five years.
As part of this process, we called on the NIH to issue disease-specific, multi-year Request for Application (RFAs) and investigator-initiated funding opportunities.

While, we had some good discussions on opportunities to incrementally advance the field, it was evident that the NIH leadership is not yet ready to significantly accelerate NIH’s approach and commitment to ME.
The NIH reaffirmed its approach to exclusively focusing on foundational research and using the collaborative research centers to create “a seed” to grow the field over time.
We strongly DISAGREE with this approach. We see significant opportunities in both basic research and treatment trials that would rapidly transform ME research, drug development, and clinical care. We need a much stronger and more strategic commitment from the NIH in order to achieve this.
We will fight on all fronts for the NIH to deliver outcomes to people with ME as quickly as possible, including through our Congressional work. As a community, we will hold the NIH accountable and demand that meaningful outcomes are delivered for people with ME within the next 5 years.
Read the full article, and view the presentation given by #MEAction.
Right now we need Collins to hear from YOU, the community, on how necessary it is for the NIH to take bold steps to urgently produce outcomes for people with ME.
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U.S. Congress

The U.S. Congress team has been really busy this month with our most recent call-to-action, a letter about ME to the Department of Health and Human Services (HHS) that was signed by 42 members of Congress.  The bipartisan, bicameral letter – sponsored by Senator Ed Markey (MA) and Congresswoman Anna Eshoo (CA-18) – was drafted to address the sudden termination of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) and other pressing ME issues.
With our partners at the Solve ME/CFS Initiative and the Massachusetts ME/CFS & FM Association, we worked closely with Congressional staff to frame the letter and obtain signatures.
In less than two weeks, over a thousand people took action through our new one-click system! In addition to the action surrounding the letter, the Congress team strategized with the NIH team concerning the meeting with Dr. Francis Collins and has started working on 2019 planning. With so many new members of Congress and our increasing number of supporters, we are excited about the opportunities to fight for more awareness and funding in next year’s congressional calendar.

All I want for Christmas…
Tell NICE they cannot just dismiss us
This holiday season, millions will be missing from parties and celebrations, because of the severity of ME. Yet the National Institute of Health and Care Excellence (NICE, the public body responsible for UK clinical guidelines) have just dismissed legitimate concerns of thousands of people with ME, and their friends, family and allies who emailed them. Staff at NICE have responded to our objections by telling us to trust them and wait almost 2 years until the next formal opportunity to comment. However, we will not be silenced.
Join us in adding NICE to your holiday card list. Send a holiday card to NICE staff telling them why those who have championed the ideas and treatments that have harmed our community should not be writing the guideline that will influence treatment for decades to come.
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ME activists met with Australia’s Health Minister, Greg Hunt. Left to right: Prof Paul Fisher, Sasha Nimmo and Dr. Heidi Nicholl.
Australia’s Health Minister, Greg Hunt, held a second meeting on Nov. 29 with ME advocates to discuss opportunities for biomedical research, and to discuss how support services can help people struggling with ME.
The ME advocates present at the meeting were: ME Australia (a small advocacy group headed by Sasha Nimmo, who has ME), Prof Paul Fisher, representing the ME/CFS Discovery Research Network (a network of collaborating biomedical researchers across four universities in Victoria and the ANU) and Dr Heidi Nicholl from Emerge Australia.
The Health Minister and ME advocates discussed the need to provide dedicated biomedical research funding to support promising Australian science, and how medical research in Australia is under threat due to a lack funding, as it relies mostly on small, philanthropic grants. At the conclusion of the meeting, Minister Hunt asked for a further meeting. Read a summary of the meeting, written by Sasha Nimmo.

Australian Greens MP, Adam Bandt, formally tabled a petition for Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) in Parliament on Dec. 4th.

The Emerge Australia petition asks the National Disability Insurance Agency (NDIA) to collaborate with the ME/CFS community to develop appropriate guidelines for National Disability Insurance Scheme (NDIS) assessors, and for ME/CFS to be added to List B of permanent conditions for NDIS. Close to 1,4000 people signed the petition. Read more.
If you’d like to thank Adam for his ongoing support for the ME/CFS community, feel free to send him an email, which we know he and his staff read and appreciate: [email protected]. Or, leave a comment on his Facebook page.


Millions Missing Canada launched a twitter campaign calling on Canadian MPs to schedule a parliamentary debate about the ME crisis in Canada – just as the UK & Australia are doing. View the Twitter campaign here, which includes an impressive, educational video.


boy in bed with arms folded and head lowered
The Finnish petition is over 4,000 signatures and growing!
This petition is to Annika Saarikko and Pirkko Mattila, the ministers of the Finnish Ministry of Social Affairs and Health and calls for appropriate treatment of ME/CFS and emphasizes that ME/CFS is not a functional disorder.
Please keep sharing and signing!
[maxbutton id=”21″ url=”” text=”Sign the Petition” ]

#MEAction begins its Values & Policies process

#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.
The Goal:
Our goal is to add clarity to all areas of our work and for the entire community to understand #MEAction’s values and principles. We will draft a set of foundational principles, defined by #MEAction staff, volunteers, and everyone in the community, on which we will base our work. In addition, we will draft a platform of policy positions. We will share our values globally. Our policy positions may vary from country to country, depending on national context.
The Timeline:
We will begin by asking you about what issues are most important to take a stand on — and what things we should leave open in order to allow a diversity of perspectives. What do you think are the crucial principles and values for our movement? What tactics and ways of operating are important to our community? What positions does this movement need to take?

  1. Framing the process: We took our first step gathering information by asking the community to fill out a form to indicate the topics most important to you. This process has now closed.
  2. Community discussion: Over the next several months, we will solicit and release op-eds written by a variety of voices on topics you want to explore. In the comments, on forums, and social media, we’ll discuss these topics and host a series of Bluejeans conversations.
  3. Poll: In March of 2019, we will then poll the community on key questions emerging from these discussions.
  4. Adoption: In April, we’ll publish the results of these polls alongside a final document, drafted by staff and in consultation with our most engaged volunteers. That document will then be voted on by the entire community.

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

The International Alliance for Myalgic Encephalomyelitis (IAFME) produced a trans-national scientific position statement on ME that asks the World Health Organisation (WHO) to take leadership for people living with ME worldwide who continue to face poor access to healthcare and support. Read their statement here.

Support our Work! Please help us reach our $100,000 end-of-year goal by donating and sharing our End of Year Fundraiser!
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