advocacy

Note: This isn't intended as a partisan post, vote for who you want, I just see potential for ME advocacy in it. https://donation.labour.org.uk/page/s/question-for-theresa-may Thought this is an opportunity to potentially highlight the number of people affected by ME in the UK, especially to...

Australians with ME/CFS continue to be harmed by GET. If you’ve been harmed by GET, write a letter to one of our campaign targets (RACGP President, Dr Bastian Seidel, or Chief Medical Officer, Dr Brendan Murphy) or your local MP, to explain the impact of this treatment on you, and ask for...

I'm a big believer in the cliche that gets beaten into every writing workshop student: show, don't tell. I'd rather someone show me that he or she is kind or smart or funny than merely tell me he or she is kind or smart or funny. Because Twitter is filled with a lot of anger (which is often...

Hi folks, I just got off a planning call with ME Action volunteers about how to coordinate #MillionsMissing events planned for May 12th. I was encouraged to register an event with ME Action. I learned that even though all I am going to do for May 12th this year is take some photos and share...

Facebook question: How can I create an ad targeted at people interested in myalgic encephalomyelitis or Chronic fatigue syndrome? I was previously able to use the following headings: Alternative names for chronic fatigue syndrome, cfs or Chronic fatigue syndrome awareness. However they no longer...

Here is a place collecting stories about access (or not) to Medicare home health services in the USA. You can choose who they will anonymously (or not anonymously) share your info with (or have them not share it at all), but they do ask for your name, email, phone number, and ZIP code for...

The MEAction website has info on how to set up or participate in #MillionsMissing protests on May 12, 2018. https://millionsmissing.meaction.net/get-started/

Help Fuel SMCI's Fight in Washington DC! Last year, 52 ME/CFS patients and advocates met with more than 80 members of Congress and their representatives in Washington, DC. We also co-hosted a congressional briefing. YOU can help make this year’s ME/CFS Advocacy Day bigger, better, and bolder...

" In 2017, Jen Brea did the impossible. She catapulted ME/CFS onto the public stage, and into the international spotlight, all in one fell swoop with her film, Unrest. Brea’s moving documentary has been received with universal acclaim. It has been reviewed by the New York Times, the Wall Street...

Maybe somebody might find this of interest, maybe not. Top 5 Twitter Patient Leaders to Watch WEGO Health | February 19, 2018 https://www.wegohealth.com/2018/02/19/top-twitter-patient-leaders/

For those of you who are interesting in seeing the ME landscape change by supporting advocacy, I would like to ask for your feedback. I am interested in creating a new global (borderless) advocacy website where tasks could be posted, tracked, and marked as complete. The idea behind creating a...

We already have an extensive discussion thread on the subject here, https://www.s4me.info/threads/call-to-action-westminster-hall-uk-parliamentary-debate-pace-trial-and-its-effect-on-people-with-me-carol-monaghan-february-20.2294/ This thread is intended to gather the various ways we can inform...

Hi, I guess you've all seen the other thread (or got the email) that the planning for the Millions Missing protests have started: https://www.s4me.info/threads/millionsmissing-global-protest-may-12-2018.1992/ I opened this thread to talk about a possible protest (don't dare to use plural :))...

and it looks pretty good, mainly due to being written by Mary Dimmock, Susan Levine and Terri Wilder. Starts at page 23 in this PDF, http://www.nysafp.org/NYSAFP/media/PDFs/Family%20Doctor/Family-Physician-Winter-2018WEB.pdf

Lacking the resources to write more -- just would like to let you know how the German Patient Organisation for MS "AMSEL" handles the issue of false (psycho-) perceptions of illness related fatigue. Apologies for the Google translation (always funny though) - hope the key message is not lost...

The Unrest film team sent out a rather long email today. At the bottom of the mail there are links to three actions to take. I thought the action to call NIH Director Collins was worth posting in its own thread. The idea is for callers to ask him to watch Unrest and also schedule a screening...

Merged thread https://www.actionforme.org.uk/news/international-m.e.-advocacy-our-latest-project/

http://msmagazine.com/blog/2017/12/26/pain-and-prejudice/

http://www.cnn.com/2017/12/17/world/amy-wright-2017-cnn-hero-of-the-year/index.html Amy Wright is 2017 CNN Hero of the Year Wright advocates for people with disabilities She employs dozens of people with physical and intellectual challenges at her coffee shop “My children are not broken," Amy...