M.E. Awareness Day – Humbly Revisited

While I was spending M.E. Awareness Day grumbling about the pitiful lack of headway in the world of M.E., other patient advocates were revealing exciting new ways they are making it better. The day brought the launch of a new worldwide M.E. advocacy platform, the announcement of a new grassroots organization with a novel idea and the release of the theatrical film trailer of a highly anticipated film. At the close of the day, the words of a poet reminded me even the most difficult life can be lived with grace.

First, the announcements:

Extraordinary advocates Jen Brea (Canary in a Coal Mine filmmaker) and Beth Mazur (M.E. patient and self-proclaimed science nerd) combined forces to co-found #MEAction. http://www.meaction.net/ This is not your usual advocacy organization. This is a comprehensive advocacy platform M.E. advocates all over the world can use to launch grassroot projects.

Posted on the #MEAction website:

#MEAction is an international network of patients empowering each other to fight for health equality for Myalgic Encephalomyelitis.

MEAction is not structured like a traditional advocacy organization or patients’ association. We are primarily a platform, designed to empower patients advocates and organizations, wherever they might be, with the technological tools and training to do what they are already doing – better.

We were founded with the belief that while we may find it difficult to advocate for ourselves in the physical world, in the virtual world, we can be an unstoppable force.

Two days in and #MEAction is already promoting worldwide/statewide petitions to Congress, the MEadvocacy.org and Health Rising letters to Congress campaigns, the M.E. Chilli Challenge, the Open Medicine Foundation and The Microbe Project fundraisers, the Australian and DePaul University survey studies and the “retire this image” stock photo campaign. Plus, if you have a project in mind, #MEAction gives you training and a platform to launch your own advocacy event. Plans for expansion are already underway. Acting up for M.E. just got a lot easier.


Advocating4ME chose the May 12th awareness day to introduce themselves as a new grassroots organization. https://www.facebook.com/pages/Advocating4ME/1606524889591699?fref=ts

On their Facebook page, Advocating4ME describes themselves as:

a new multi-national advocacy group established for the purpose of raising funding for the most promising scientific research studies for Myalgic Encephalomyelitis. We are interested in helping researchers seeking to identify biomarkers in ME patients or those seeking to develop new medical treatments for Myalgic Encephalomyelitis patients.

I am particularly enthusiastic about the first project Advocating4ME will undertake:

We are excited to announce the beginning of our first campaign, which will feature a team of professional writers collaborating to write personalized letters to selected philanthropists and asking them to fund specific scientific research studies in the M.E. community.

I have long maintained if we are able to get philanthropists to step forward and help the M.E. patients, social barriers will crack as a result and the way will be better paved to finally fully fund M.E.scientific research. This project by Advocating4ME seems to be a solid step in the right direction.


Also, on May 12th, filmmakers Ryan Prior and Nicole Castillo teased us by releasing the first theatrical trailer of their film, Forgotten Plague. The trailer confirms Ryan and Nicole have beautifully captured on film the true pathos of M.E. The full length film will be released this summer. Watch the trailer::


If you wish to stage a screening of Forgotten Plague in your area, you can learn how here: http://mecfsdocumentary.com/stage-a-screening/


Finally, I learned a humbling lesson on May 12th. While I devoted my #May12BlogBomb post to whining about inaction, loss and anger, better people than I were launching projects to better lives of M.E. patients everywhere. I admit to feeling more than a bit of shame. In one of those moments of contrition, I found the May 12 awareness day contribution of poet and M.E. patient, Sarah-Louise Feather Jordan.

For those who do not know her, Sarah-Louise contracted M.E. as a child in the UK and has spent the majority of her life ill, confined to her home. Exceptionally gifted, she escapes through writing. Her poetry fills the spirit and sustains the soul of M.E. patients around the world and she makes that world a better place.

After listening to Sarah-Louise, I realized hers was the message the world needs to hear for awareness day; not my blather.. So, in closing the book on this year’s M.E. Awareness Day, I leave you with the words of poet/patient Sarah-Louise Feather Jordan:

https://www.facebook.com/sarahlouiselula.jordan/videos/10205913877837804/?pnref=story *

*The video is audio only. The acoustics make listening a bit challenging but the content makes it well worth the effort.


2 thoughts on “M.E. Awareness Day – Humbly Revisited

  1. Thank you so much for your write-up about #MEAction and for your support! We’re excited to partner with advocates like you to bring about positive change for ME patients around the world. Please email me at info@meaction.net if we can help promote any campaigns you’re involved with or articles you’ve written.


    • Thank you for the comment, Rachael. The launch of MEAction.net is huge for this patient community and I so appreciate the amount of work it took to build this advocacy tool. No doubt major PENE was involved. This platform takes our advocacy work to a much higher level and I look forward to participating. –Robin


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