activism

ME/CFS patients in Austria: fighting for visibility and recognition Agnes Köchl Advisor: Janina Meillan-Kehr Abstract (Google Translation) ME/CFS is a largely unknown and socially unrecognized illness, often confronting those affected with isolation and stigma. Nevertheless, a subtle...

https://online.ucpress.edu/currenthistory/article/124/858/9/204211/Long-COVID-and-the-Rise-of-Digital-Patient Research Article January 01 2025 Emily Mendenhall Long COVID and the Rise of Digital Patient Activism https://doi.org/10.1525/curh.2025.124.858.9 HIV patient activism has had a...

Abstract This article examines the contestation of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Lacking consistent diagnostic definitions, agreed-on biological indicators, or approved treatments, ME/CFS is an incompletely medicalized condition. It is defined by intractable and...

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...

Bridget Mildon created FND Hope International, and is very active in supporting the concept of functional neurological disorders. She wrote about the experience that set her on the path of advocating for FND here Mad in America: Turning patients into numbers Her experience and initial...

Last week, an old story was recounted to a new audience. During the March 30, 2021 NIH telebriefing with the ME/CFS community, Dr. Vicky Whittemore said that there had been death threats against grant reviewers in the past, and that this was one reason why NIH is now withholding the names of...

Is your age within the range of 18 to 35? Do you identify as a disabled person? Do you currently live in a European State? Do you have experience or are interested in disability activism and disability politics? If you answered yes to these questions then please consider taking part in this...

Recommendations From the Twitter Hashtag #DoctorsAreDickheads: Qualitative Analysis https://www.jmir.org/2020/10/e17595/ Would be interesting to do something similar gauging physicians' reactions. I skimmed through the /r/medicine thread a few days ago and wow was it nasty tone policing...

Paywall, https://www.sciencedirect.com/science/article/abs/pii/S0399077X20307265 Sci hub, https://sci-hub.se/10.1016/j.medmal.2020.09.026

But I thought activism was bad??? https://www.timeshighereducation.com/news/lancet-editor-chief-calls-activist-journals

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

https://www.meaction.net/2019/10/03/inside-outside-activism-why-we-must-shout-in-the-streets-and-sit-at-the-table/

Moderator note: Posts on this thread have come from three places, this thread and the following two threads. They have been copied or moved to keep the discussion in one place. Cochrane Review: 'Exercise therapy for chronic fatigue syndrome' 2017, Larun et al. - Recent developments, 2018-19...

Moved from this thread Thought this was posted here already but I can't find it. www.psychologytoday.com/us/blog/the-intuitive-parent/201907/the-dark-side-social-media-activism-in-science The reference in the quote is to the Reuters article.

After yet another round of news articles misrepresenting the views of "ME activists" can someone please point me at some actual views. Either individual patients or links to charities' / organizations' views. Alternatively, what do you see as the most common views of ME activists? Maybe the...

A longish read. I skimmed through. An interesting quote from near the end: The activists questioned the gold standard of medical intervention research – the randomised, controlled trial – and showed how a series of normative assessments are made in all medical research, for example how study...

Reuters: full article here: eta: link deleted please use this one http://archive.today/lwDNQ

https://www.meaction.net/2019/02/01/proud-accessible-activism-the-me-debate-virtual-demonstration/

Paywalled at https://link.springer.com/article/10.1007/s11673-018-9866-5

/Movement Action Plan/, by Bill Moyer. http://www.indybay.org/uploads/movement_action_plan.pdf excerpt: === STAGE TWO: PROVE THE FAILURE OF INSTITUTIONS The intensity of public feeling, opinion, and upset required for social movements to occur can happen only when the public realizes that...