advocacy

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...

Threads about different articles have been merged Article about today's protest at the White House from MedPage Today: "Long COVID, ME/CFS Patients Protest in Front of White House" https://www.medpagetoday.com/infectiousdisease/longcovid/100806 There was also a mention of the protest, and...

Reminder for anyone who wants to help out with the 2022 Millions Missing protest scheduled for Monday, September 19. There's an online training session tomorrow - Sunday, September 11, 12 pm Pacific Time, 3 pm Eastern Time - for people who will be taking action from home. I believe that...

In November last year Action for ME invited people with ME to complete a questionnaire describing their experience of ME. The responses were collated by Scottish artist and poet Alec Finlay who selected the most expressive phrases, without altering them, to create a collective patient-led...

A popular YouTuber (149k subscribers), Lex Play, has made a video about an ME island created by Lisa, The Unlikely Gamer. It can be watched here: It already has nearly 11,000 views in the first 10 days. It is a 19-minute watch which may be a bit long for some people I realise. I have...

Bit of a mouthful thread title, but I have seen many references in the last few years that explicitly blame the biopsychosocial model of ME/CFS as a historical mistake, a failure that should not be repeated with Long Covid. Sadly, though, it is being repeated. But one of the main tropes of BPS...

Great video - one of the best I've seen. Winston has real skill. Maybe we can use it to our advantage. I'd like to see a UK version.

Someone calling themselves Long Covid Patient Action Group UK on Twitter has announced protests calling for more research into long covid outside parliament in London on the 9th of March, and a simultaneous "Twitter storm" for those too unwell to come: It's open for pwme to join: I'm not...

He Was Given 6 Months to Live. Then He Changed D.C. https://www.politico.com/news/magazine/2022/01/14/brian-wallach-als-advocacy-527094

As you can see, this is not a new article but I thought it was worth sharing. Written by a family physician. Not really about ME/CFS but this general attitude would be really beneficial for us too of course. “I don’t know.” It’s an answer patients hate to hear. It is also an answer we doctors...

I've been seeing many lately and thought a thread could be useful. Either coming from Long Covid advocates or professionals interested in learning about ME, people sometimes send out open requests for information, papers or studies on a specific topic that may span many subjects. Usually those...

What is the Conference on the Future of Europe? The Conference on the Future of Europe is a unique and timely opportunity for European citizens to debate on Europe’s challenges and priorities. No matter where you are from or what you do, this is the place to think about what future you want for...

Rivka on Twitter: "Tonight, the @PBS @NewsHour w/ @JudyWoodruff airs a piece on #MEcfs. Thx to an amazing @MassMECFS volunteer for this graphic. (Pix is of an @unrestfilm event yrs ago. Slide behind me is a statement of support for people w/ ME fr the entire Massachusetts Congressional...

This is a 6 minute film created by Inga Topolnicki. I thought it was moving and impressively well made! From the description: An Existence Project is a short stop-motion animation about what it is like to live with mild or moderate Myalgic encephalomyelitis or chronic fatigue syndrome...

https://www.actionforme.org.uk/news/join-our-uk-wide-self-advocacy-workshop/

For people who have no idea what ME is like, (for example most doctors and healthcare workers) how would you express it briefly? You could use: words/phrases, maybe a word cloud. quotes or facts drawings/pictures The space is small and rectangular. All ideas and links are welcome. You do...

I found the following announcement at the bottom of this page - https://solvecfs.org/finding-resources-and-creating-opportunity-2020-me-cfs-federal-advocacy-report/ - and thought it deserved its own thread.

This thread is intended to get an overview of ME/CFS news in France.

Evelien and I recently made an overview of ongoing or planned clinical trials for ME/CFS. We concluded that there are few decent treatment trials for ME/CFS in the pipeline and that things seem to be moving much faster for other illnesses such as multiple sclerosis and schizophrenia. Because...

A brave & thoughtful story my daughter Nadine wrote about her recent diagnosis with ME, my family's history with the disease, COVID long-haulers and how it's time to start paying attention to those who suffer from chronic illnesses we don't yet understand. "How did my siblings and I collapse...