advocacy

Concept Campaign: Raising Awareness of ME/CFS Among Unaffected Audiences Iga Domińczuk LAB University of Applied Sciences Institute of Design and Fine Arts Bachelor of Culture and Arts, Packaging and Brand Design Abstract Visual communication has the power to challenge stigmas and public...

I have a friend who asked me what book to read to understand ME/CFS and “the situation”. They are not a medical professional or psychiatrist, they are just an average educated person who wants to “learn about” ME/CFS. I really have no clue what to send them. I’d preferably like something that...

#MEAction has started planning for Millions Missing campaign (May 12) in the USA. Why We’re Sending out an SOS this #MillionsMissing If you go to that link you'll see there's a lot of information including this US toolkit (separate plans are in the works for the UK and other locations --...

Action alert for US citizens: Action Alert! Tell your Senators to VOTE NO on proposed 57% cut to Research Programs The link above goes to an automated tool for contacting your US senators to ask them to vote NO. Details:

#MEAction’s Medical Flashcards Featured by CDC! #MEAction is asking folks to participate in their Reddit Q&A session with medical students. Date: Monday, February 24 Time: Noon to 5 PM Eastern time

I created a petition to demand the renaming of Chronic Fatigue Syndrome, since it's associated with so much neglect and gaslighting. I will be bringing this petition to the attention of our advocacy leaders. If you agree, please sign the petition to help support this change. There is more...

Note: This action is for folks living in the USA. #MEAction is urging folks to contact their elected officials to ask that Medicare coverage for telehealth (doctor visits via phone or video) continue to be covered past Dec. 31...

Maybe campaign isn't the right word, it's more of a theme, very close to #MillionsMissing. It's gaining some steam, I've been seeing more of it lately. So basically #NotRecovered on social media with hashtags. Eventually some right combination of words will resonate and gain more presence. And...

Not really sure where else to put this, but this video is really great.

I posted a link to this MEAction article in the News from Organizations section but I thought I should crosspost it here. This year's Millions Missing campaign is called "Teach ME, Treat ME." The focus is medical education. #MillionsMissing Week is Here: #TeachMETreatME in Action...

Hi, I couldn’t find a general thread to post this so I’m making a new thread. A small but in my opinion cool way to increase advoacy, an initiative from my girlfriend: My girlfriend is the best. Organising a screening of Unrest at the university I had to drop out of due to severe ME.

Solve ME has created an automated tool (meant for folks in the USA) that will contact your Member of Congress (email/phone/twitter) and ask them to support a new "home" for "Infection-Associated Chronic Conditions and Illnesses" (IACCIs). Text part of the automated tool: There's another...

Today, March 15, is Long Covid Awareness Day. I thought there should be a thread for news articles, social media posts (hashtag #LongCovidAwarenessDay), etc. I'll post a few links in replies to this thread. If this is already covered in another thread then please move! I searched but did not...

This committee hearing is a pretty big deal and I was kind of waiting for someone to start a thread when it was announced so here we go. Today was held a historic committee hearing on Long Covid, with some discussion of the commonality of chronic illness and its history as it relates to ME/CFS...

The Ed Yong piece has been going round my head for a while now as it gave me a new perspective on my disease too. I think it's safe to say that at this point I have no life and I have no future. That may sound dramatic but to me it isn't. It's stating the obvious. It doesn't make me depressed...

There have been quite a lot of improvements in the ME/CFS situation in Germany. There are now investment in research, the IQWiG report, political discussions on ME/CFS etc. I realise these are all still inadequate and that the situation for ME/CFS patients in Germany remains dire. But the pace...

From Solve M.E. - a call to action for Advocacy Week: "Ask your Members of Congress to support the CARE for Long COVID Act!" https://p2a.co/Xpr5nVf This link goes to a form that sends an email to your government officials with one click. If you like you can modify their sample message before...

I saw this post by @MEFoggyDog on Mastodon so I thought I'd share. This same hashtag - #MPDoYourJobForME - is also being used on twitter so you can search for it there. I did not watch the whole video, but the title of the document linked in the post is: Politician's Guide: How To Advocate...

The Solve Newsletter thread has been merged with this thread. Spring 2018 Contents: Page 2 - SMCI This Quarter: A Summary of Our Work Page 5 - SMCI Welcomes Two New Members to Its Board of Directors Page 6 - What’s in a Definition? Finding a Common Language for ME/CFS Page 8 - PEM: It’s Time...

The ME/CFS patient community has long worked on debunking graded exercise and CBT as treatments for the disease but I am not aware of similar efforts in the fibromyalgia patient community. Rather, it seems to me that they have accepted these treatments as part of their standard of care. I...