Thank you very much @chronicliving123.bsky.social for giving me the opportunity to share this research with therapists as well as patients. I appreciate your platform's work in making research accessible and greatly enjoyed speaking with you.
Bita Nezamdoust @bi-ta.bsky.social researched how people with #MECFS use twitter, learning from the short interactions they are able to engage in. She shares insights into the experiences of people with #SevereME and #VerySevereME which would be hard to access in other ways.
January 22, 2026 at 5:01 AM
Thank you very much @chronicliving123.bsky.social for giving me the opportunity to share this research with therapists as well as patients. I appreciate your platform's work in making research accessible and greatly enjoyed speaking with you.
Reposted by Bita Nezamdoust
1) New sociology paper on severe ME/CFS. The authors analyzed 342 messages on Twitter/X to get insights into the daily reality of people with severe ME/CFS.
They highlight the feeling of being trapped by the illness, profound isolation and longing for the outside world.
They highlight the feeling of being trapped by the illness, profound isolation and longing for the outside world.
November 22, 2025 at 8:39 AM
1) New sociology paper on severe ME/CFS. The authors analyzed 342 messages on Twitter/X to get insights into the daily reality of people with severe ME/CFS.
They highlight the feeling of being trapped by the illness, profound isolation and longing for the outside world.
They highlight the feeling of being trapped by the illness, profound isolation and longing for the outside world.
Thank you @tomkindlon.bsky.social for sharing our article. This was such an emotional work to do and I poured every bit of my heart in there for this amazing community of #MECFS. Special thanks to those with #severeME whose experiences we have had the privilege of reflecting.
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Contested and neglected: Social and medical marginalization in severe Chronic Fatigue Syndrome
www.sciencedirect.com/science/arti...
"Severe ME/CFS patients face deep social, medical, and structural exclusion."
#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
1/
Contested and neglected: Social and medical marginalization in severe Chronic Fatigue Syndrome
www.sciencedirect.com/science/arti...
"Severe ME/CFS patients face deep social, medical, and structural exclusion."
#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
1/
November 12, 2025 at 12:33 AM
Thank you @tomkindlon.bsky.social for sharing our article. This was such an emotional work to do and I poured every bit of my heart in there for this amazing community of #MECFS. Special thanks to those with #severeME whose experiences we have had the privilege of reflecting.