advocacy

The Solve M.E. group is organizing another ME/CFS Advocacy Week this year for April 19 – 26, 2020. A limited number of folks can get financial aid to help them to make the trip to Washington, DC. You must register to be eligible. The deadline is Friday, February 21. There are a lot of links...

MEAction has an article reporting on their "Cards to Koroshetz" campaign. They asked folks to send holiday cards to Dr. Koroshetz, Director of NINDS (National Institute of Neurological Disorders and Stroke) at NIH, to tell their stories about living with ME...

I love this art project about ME using book titles! #MEAction tweeted about this artist recently, which is how I discovered it, but here's a link to her instagram showing the latest project: But if you want to share on twitter here's a link to the thread by #MEAction...

It thought this was an idea worth considering, as online presence seems like one of the most powerful assets of the ME/CFS community. As I understand it, the main idea is to take one hour per week (Wednesday 8 PM London time), where we all tweet about ME/CFS so that it becomes a trending topic...

I'm looking for suggestions for (non-UK*) European speakers who could be good to give talks to ME/CFS patient groups in English. Medical doctors preferred but non-MD researchers who could also talk & answer questions about a range of ME/CFS research could also be good. If you prefer, feel free...

A new Canadian initiative has been launched to reach out and educate our new MPs post-election. We hope you'll consider downloading the letter, sending it off to your MP and asking family and friends to do the same. Flooding their offices with our letters will raise awareness and help gain the...

https://blogs.bmj.com/bmj/2019/11/26/should-patient-advocates-adopt-guerilla-tactics/

ME Association: Speak Up for M.E. in the General Election: Contact Your Candidates!| 19 November 2019 https://www.meassociation.org.uk/2019/11/speak-up-for-m-e-in-the-general-election-contact-your-candidates-19-november-2019/ Dr Charles Shepherd, Hon. Medical Adviser, ME Association. This...

An excerpt from today's ME Action email about the #NotEnough4ME campaign: The idea (in brief) is to make a video saying his response is not enough and post it on social media with hashtag #NotEnough4ME and tag Dr. Koroshetz and NIH. Link with full instructions -...

After a brief pause the "Postcards to Doctors" project has been relaunched as of Oct. 1. The aim of this project is to have patients (as well as friends, family and other allies) write doctors to urge them take a continuing medical education course. See Unrest medical education for information...

After attending a very successful fundraiser over the weekend (I just attended it, did not organize it!) I thought it would be good to have a thread with resources to support others who want to hold a fundraiser. There are have been posts in several different forums about raising money for...

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...