twitter

Now published - see here Preprint Public Perspectives on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Twitter Thematic and Sentiment Analysis Iliya Khakban; Shagun Jain; Joseph Gallab; Blossom Dharmaraj; Cynthia Lokker; Wael Abdelkader; Dena Zeraatkar; Jason Walter Busse...

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...

Does anyone have a strong technical/research background and be interested in speaking to the community on ME/CFS research? I held a Twitter (or X now) Space about a week ago on research in ME/CFS and Long COVID, which was very successful. I’d like to bring on a few “panelists” to have a...

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.

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...

He seems to totally get it. Amazing. Yet another sign the public perception of ME/CFS is improving.

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...

https://www.nature.com/articles/s41591-019-0697-7 behind a paywall and no sci-hub link but readable here:

I hope I’m not duplicating a thread - I’ve searched but can’t find anything on this subject. “On April 9, 2019, ME advocates Eileen Holderman and Gabby Klein sent an open letter to the Secretary of the U.S. Department of Health and Human Services (HHS), Alex M. Azar II. “The letter urges...

I know there is a This is ME Campaign (Ireland) anyone know who are behind this one? Their website: https://thisismeuk.com/ under Take Action eta: their twitter ac https://twitter.com/ukthisisme

You may be interested to know that Kate Kelland, the journalist behind the Reuters Michael Sharpe story, follows a large number of S4ME members on Twitter. https://twitter.com/kkelland/following We know about @Paul Watton & @dave30th. The list also includes as @Spoonseeker & Simon McGrath...

I think that many of us have noticed the presence of Professor Danny Blanchflower on Twitter. He is an old friend of Professor Peter D White and has been aggressively defending the PACE trial. He uses abusive language—for example calls patients with ME/CFS “whiners”—and quickly blocks people who...

Interesting feature on a topical issue. It's getting easier for patients that participates in clinical trials to connect online and share experiences and information. But what if that leads to unblinding a trial? Also discusses how difficulties in recruiting patients for clinical trials has led...

The BPS Brigades Score Another Own Goal Not long ago, Sir Simon scored an own goal by enticing a childhood buddy to enter the PACE debate. That buddy, attorney and social commentator Mike Godwin, soon pronounced the trial—which Sir Simon had called “a thing of beauty”–to be “so profoundly...

Michael Sharpe Tweeted this out. Well, the professor doesn't mention PACE trial deniers, but we all know what he is really up to. :sneaky: Afterall, PACE trial critics were compared to flatearthers, anti-vaxxers, and climate change denialists. However, note Robert McMullen's tweet and how it...

https://corsius.wordpress.com/2018/06/09/conversation-on-twitter-with-cfs-research-and-prof-michael-sharpe/

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...

From twitter Hit link.to see thread

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/