advocacy

News about Evelien's testimony to Parliament has already been posted on the thread about the EU Petition but I thought the testimony deserved its own thread. This article by #MEAction includes a video: https://www.meaction.net/2019/10/03/me-activist-testifies-before-eu-parliament/

The title pretty much says it all but I'll waffle a bit more. The idea is to provide a document that either provides those things that we have evidence for, either positive or negative, or those things that we don't in as brief a format as possible. The more our advocates can base their...

https://www.meaction.net/2019/09/21/meaction-advocates-will-speak-at-stanford-medx-conference-this-weekend/?mc_cid=d8cd069995&mc_eid=c1fdea04b1 eta: 10.30 pm GMT eta2:

Apart from helping to guide NICE guidelines development & the Nina Muirhead higher education work The new physio professionals group Is anything happening in the UK. ? Any campaigns? Any lobbying and developments from the House of Commons debate or plans as to what to do next? Any chance of...

Moderator note: This discussion has been moved from this thread: Concerns about craniocervical instability surgery in ME/CFS

Are BHC involved with the CDC? Given the recent events and the MEAction call-to-action, it's clear that the CDC needs to be spoonfed and instructed with painful details about what to do. The goal of this project certainly aligns with that. https://disruptingdisbelief.com

Australia: International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) including myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS) Sandgate Town Hall will be lit up Blue for International Awareness Day for Chronic Immunological and Neurological Diseases...

I'm putting this in the members-only section because I was advised to keep it quiet until it's published (besides posting this here, of course). I was informed by Sara Piccer, OMF volunteers relations manager, about an upcoming CNN coverage of May 12. The report is expected to be published on...

Hi, I have everything ready for the Sunday Millions Missing event except one item. I want to create a poster to put up near our table. I ended up getting a tri-fold display board that will stand on its own (Digression - I was going to use plain piece of poster board but when I tried leaning it...

Open access, https://journals.sagepub.com/doi/full/10.1177/0003122412458509

My husband and I are planning a small #MillionsMissing event at our local library in Beaverton, Oregon. We plan to set up a small table in front of the library for a couple of hours on the afternoon of May 12. We'll hand out pamphlets and answer questions. I thought having some bookmarks made...

You may recall when ME Action Network started there were mentions of ACT UP. This was the campaign in the 1980s by the LGBT community to get more research into AIDS (mainly in the US) There was a documentary made around 2012 called United in Anger and it's available on YouTube. The programme...

I hope I’m not duplicating a thread - I’ve searched but can’t find anything on this subject. “On April 9, 2019, ME advocates Eileen Holderman and Gabby Klein sent an open letter to the Secretary of the U.S. Department of Health and Human Services (HHS), Alex M. Azar II. “The letter urges...

I've been following the microbiome literature daily for 4+ years while cataloging it all into this wiki: https://old.reddit.com/r/HumanMicrobiome/wiki/ There is tremendous support for FMT being close to a panacea with the major caveat being that the donor is in perfect health, with an...

Most of us are not able to go to Washington, DC for this advocacy week. But there are still ways to make your voices heard! Today I called both of my senators and then tweeted about it: https://twitter.com/ahimsa_pdx/status/1113509333101187073...

https://www.meaction.net/2019/03/23/our-community-will-not-suffer-stigma-and-distortion/

Spotted this on social media. https://petitions.whitehouse.gov/petition/funding-dedicated-research-chronic-fatigue-syndrome-mecfs-develop-diagnostic-test-treatment-and-cure

https://www.meaction.net/2019/01/11/are-you-a-young-person-affected-by-me-how-do-you-visualize-health-equity-join-a-national-contest/

https://valerieeliotsmith.com/2019/01/07/changing-the-narrative-1-exploring-a-new-approach-to-strategic-communications-in-the-me-community/

Moderator note: We've merged a number of threads to collect Naomi's blog posts into one thread. An article originally printed December 2016 but now updated with an audio version as well...