social media

Abstract: Long COVID continues to challenge public health by affecting a significant segment of individuals who have recovered from acute SARS-CoV-2 infection yet endure prolonged and often debilitating symptoms. Social media has emerged as a vital resource for those seeking real-time...

There were a couple of social media accounts on ME/CFS research and advocacy, as well as more general research relevant for ME/CFS I used to follow in the past. I haven't checked them for a while due to diverse reasons, including diminished capacity / downturn in my health. I was happy to...

It's been a while since I actively used LinkedIn but I think it is getting more popular for posting information with the decline in Twitter/X. I wonder, how many of our members have a LinkedIn account and how many of you actively use it? Can you tell us about any experiences using LinkedIn...

Pre-pandemic activity on a myalgic encephalomyelitis/chronic fatigue syndrome support forum is highly associated with later activity on a long COVID support forum for a variety of reasons: a mixed methods study. William U Meyerson; Rick H Hoyle Encephalomyelitis/chronic fatigue syndrome...

Comparing Physician and Artificial Intelligence Chatbot Responses to Patient Questions Posted to a Public Social Media Forum John W. Ayers; Adam Poliak; Mark Dredze; Eric C. Leas; Zechariah Zhu; Jessica B. Kelley; Dennis J. Faix; Aaron M. Goodman; Christopher A. Longhurst; Michael Hogarth; Davey...

Podcast: "Doctors and dualism" - Diane O'Leary, 2022 A podcast from ABC Australia featuring Diane O'Leary. Apparently ME/CFS is a prominent feature of the discussion: https://www.abc.net.au/radionational/programs/philosopherszone/doctors-and-dualism/14004928 (I haven't the cognitive function...

The idea of this thread is to collect useful *short* arguments to refute the claims most often used by BPSionists in reaction to criticism of GET and CBT as treatments for ME. Note: Before you post here, please read the discussion on the members only thread on non-evidenced and other...

Twitter is blocking all click-throughs on mobile browsers when not logged in. Have been for a couple of days. You can still use Twitter not logged in from some browsers on a computer (not a mobile device) though.

A topic that has extra relevance given Shepherd's expulsion from the NICE committee and weaponizing the monitoring of online content in favor of a political narrative (and also let's say it clearly: for self-interest). This is related mainly to discussions in certain governments, prominently the...

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...

One of these is Curable https://www.facebook.com/curablehealth/ "Pain causes fatigue, etc., etc." There were two other apps being pushed in my Facebook timeline, but I can't remember what they were. Just a placeholder thread for such apps, as they seem to be being pushed harder commercially...

https://www.bbc.com/news/health-51134545 What could go wrong?

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...

full editorial here: https://jamanetwork.com/journals/jama/fullarticle/2756117 (note, article was retweeted by MS who is now 65th President and Chairman of the Board of the Academy of Consultation-Liaison Psychiatry)

Most of us are not able to go to Washington, DC for this advocacy week. But there are still ways to make your voices heard! Today I called both of my senators and then tweeted about it: https://twitter.com/ahimsa_pdx/status/1113509333101187073...

full text requires registration https://jamanetwork.com/journals/jama/article-abstract/2716411?utm_source=twitter&utm_campaign=content-shareicons&utm_content=article_engagement&utm_medium=social&utm_term=121918#.XBotBT5dmv0.twitter (link to this article was tweeted by Michael...

https://www.meassociation.org.uk/2018/12/situations-vacant-we-are-recruiting-for-a-social-media-manager-12-december-2018/

Bustle: "You may have noticed the hashtag #MillionsMissing trending on social media, or may have seen some landmarks lighting up blue over the past few days. That's because May 12 is International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness Day, and the folks posting in...

https://www.theguardian.com/media/2018/apr/04/missing-link-why-disabled-people-cant-afford-delete-facebook-social-media

A facebookpage has just been created called True Stories About Lightning Process This is a place where ME-patients can share the other side of LP, what turned out to be the grim reality for many. Have an experience with LP you think others should know about? Here is a platform where you can...