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An AI Map of a Puzzling Illness

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is notorious for its complexity: a disabling illness marked by crushing fatigue, post‑exertional malaise, pain, cognitive fog…
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An AI Map of a Puzzling Illness: How BioMapAI Tries to Decode ME/CFS, One Symptom at a Time​

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is notorious for its complexity: a disabling illness marked by crushing fatigue, post‑exertional malaise, pain, cognitive fog, sleep problems, orthostatic intolerance, and more, often persisting for a lifetime, without a clear biological fingerprint. Despite years of suffering, people with this condition have heard the same refrain: “Your labs are normal.”

A new study in Nature Medicine, with contributions from BHC’s Lucinda Bateman, MD, and Suzanne Vernon, PhD, challenges that narrative. Researchers built BioMapAI, an artificial intelligence model trained on one of the most detailed ME/CFS datasets ever collected, to map how the immune system, gut microbiome, and metabolism interact—and how those systems relate to what patients feel day to day.

Instead of searching for a single “smoking gun,” the study takes a systems approach, revealing that ME/CFS is not one broken part but a network out of balance.
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I found their severeMEday posts on Threads. They were either not posted to X or maybe only as story posts like they were on Facebook which only last 24 hours.
 
Dolphin said:
I found their severeMEday posts on Threads. They were either not posted to X or maybe only as story posts like they were on Facebook which only last 24 hours.
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Is Bateman Horne still using X a lot? I can't tell because without an account (not logged in to X) when I go to someone's X profile I can't see all the latest posts. There is one pinned tweet from May but the next post I can see from them is from 2023.

Anyway, here's what they posted on Bluesky, in case it's helpful:

Bateman Horne on Bluesky said:
In honor of #SevereMEDay, we’re launching #UnitedForME, a shared hashtag to amplify stories, art & education from the Severe ME community. Join us in uplifting voices that need to be heard.
#SevereME @openmedf.bsky.social @solveme.bsky.social @meactnet.bsky.social
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I didn't post this on the Severe ME thread since the statement from Solve ME (on their website) talked about the #UnitedForME hashtag and gave more information.
 
ahimsa said:
Is Bateman Horne still using X a lot? I can't tell because without an account (not logged in to X) when I go to someone's X profile I can't see all the latest posts. There is one pinned tweet from May but the next post I can see from them is from 2023.

Anyway, here's what they posted on Bluesky, in case it's helpful:



I didn't post this on the Severe ME thread since the statement from Solve ME (on their website) talked about the #UnitedForME hashtag and gave more information.
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They post a similar number of their own posts on X as on Bluesky. But they re-post more (of other people’s posts) on X than on Bluesky.
 
New blog post on severe ME/CFS from Bateman Horne Center:

Finding Comfort When Bedbound: A Community Member Shares Her Advice
Bateman Horne said:
August is Severe ME/CFS Awareness Month, a time to recognize and honor the experiences of those living with the most disabling form of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

People with severe ME/CFS often spend most of their days in bed, facing profound limitations that affect every part of daily life.

As part of this awareness month, a community member generously offered to share her personal strategies for making her space more comfortable and manageable while living mostly bedbound. Her advice reflects creativity, trial and error, and a deep understanding of how even small changes can make daily life a little easier.
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