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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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Free online even from Bateman Horne Center:

Coffee with a Clinician: Navigating Clinical Uncertainty
Wednesday, October 8, 10 AM Mountain Time
Bateman Horne Center (BHC) said:
"Coffee" with a Clinician - A free BHC Community Event
Hosted by: Zeest Kahn, MD, Melanie Hoppers, MD and Jennifer Bell, F-CNP

Join us for the very first Coffee with a Clinician! We’ll explore Chapter 1 of the Clinical Care Guide, which outlines what ME/CFS, Long COVID, and other infection-associated chronic conditions have in common. This is practical information you can share with your medical provider to help them recognize post-exertional malaise, understand overlapping conditions, and begin offering supportive care.

About Coffee with a Clinician:

- Each month, a Bateman Horne Center clinician or expert will lead a conversation focused on a chapter or theme from the Clinical Care Guide.
- Every other month, the webinar host will answer the most frequently asked questions from the ME/CFS community.
- The series is free to attend, with an optional $5 donation — “buy us a coffee” — to help BHC put the Clinical Care Guide into more clinicians’ hands.
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Register here
(registration link shows time in your time zone)
 
Blog post from Bateman Horne Center, posted on Oct. 17.

Kim Moy writes about Bateman Horne Center’s first Coffee with a Clinician webinar - Navigating Clinical Uncertainty - and shares some key takeaways.

Guest Blog: October’s Coffee with a Clinician, Navigating Clinical Uncertainty
Bateman Horne Center said:
After attending a “Navigating Clinical Uncertainty” webinar presented by the Bateman Horne Center as part of their new “Coffee with a Clinician” monthly webinar series, I’d like to share highlights, actionable tips, and reflections with you. They’re especially relevant to family caregivers of loved ones with debilitating complex illnesses.

The webinar, aimed at patients, caregivers, and clinicians, discussed topics from Chapter 1 of Bateman Horne’s Clinical Care Guide for Managing ME/CFS, Long COVID, & IACCs:

- Challenges faced by both patients and clinicians dealing with illnesses that are complex and don’t neatly map to established protocols

- Embracing a collaborative care model in which the patient (and often family caregiver) and providers share knowledge and decision-making

- Taking a “trial and pivot” approach: trying an intervention, assessing, and adjusting when needed
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From Facebook:

Dr. Lucinda Bateman recently presented for the Institute for Neuro-Immune Medicine’s (INIM) Clinicians’ Meeting Research Series, part of the Dr. Kiran C. Patel College of Osteopathic Medicine at Nova Southeastern University.

In this presentation, Dr. Bateman outlines practical, evidence-based strategies for identifying and managing orthostatic intolerance (OI), a key feature in ME/CFS, Long COVID, and other infection-associated chronic conditions. She discusses simple in-clinic assessments such as the 10-minute lean test and symptom questionnaires, shares insights from published studies, and reviews treatments that can make a measurable difference in patients’ daily function.

Watch the full presentation here ➡️

Institute for Neuro-Immune Medicine
#OrthostaticIntolerance #POTS #MECFS #LongCOVID #ClinicalEducation #BHC #INIM #NovaSoutheasternUniversity
 
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