advocacy

Someone posted a link on twitter about a planned documentary called Relevium. https://glematiroad.com/relevium-documentary I don't know anything about this other than what I've read just now on this website, but I'm hopeful. If anyone on the forum has more info about this please share! At...

I donate a monthly sum to the national ME Association and/or their research fund. Every now and then I additionally support other fundraising schemes that I deem worthwhile. Until recently my monthly donations have been modest and I have felt it was necessary to direct them towards either...

Paywall, https://content.iospress.com/articles/work/wor203173 Sci hub, https://sci-hub.tw/10.3233/WOR-203173

Moderator note posts below have been moved from: https://www.s4me.info/threads/news-from-scandinavia.647/ "Help Holger now!" 13 minutes long video in Swedish about Holger who is very severely ill with ME. Made by his younger brother. (I haven't been able to watch the whole video yet, but...

Today is ME/CFS Advocacy Day! Not participating in meetings? If you have a few minutes throughout the day, you can still support and advocate for ME/CFS. All three actions should take less than 30 minutes. You can space out the actions throughout the day to help manage your energy. You can...

https://www.eventbee.com/v/free-research-workshop/event?eid=119084524

full blog here https://the-slow-lane.com/2020/02/13/what-have-tea-and-cake-got-to-do-with-m-e/

#MEAction UK has a new project called "Take ME Seriously" Update: Anyone can join in this advocacy action. It is not just for UK residents. They are collecting comments and signatures regarding the NICE (National Institute for Health and Care Excellence) ME/CFS treatment guidelines in the UK...

A friend on mine (Evelien) has succeeded in getting a petition on ME accepted by the EU Parliament [link below*]. The petition highlights the impact of ME on 2 million people in the EU and the lack of EU funding for ME Research. I'd be grateful if you would consider supporting it (and ask...

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...