USA: News from the Bateman Horne Center

https://batemanhornecenter.org/event/online-support-group-96/

Online Support Group

June 10 @ 1:00 pm - 2:00 pm MDT
8 PM in Great Britain & Ireland
Find the time in your time zone here
https://www.timeanddate.com/worldcl...ine+support+group&iso=20250610T13&p1=220&ah=1

Topic: When Things Get Tough: Managing Difficult Emotions with Chronic Illness: Anxiety and Fear
» Click here to register

Description:
These support groups are tailored for individuals living with ME/CFS, FM, Long COVID, and co-existing conditions. Supporters and loved ones are also welcome to join.

Led by a licensed professional with personal experience managing complex chronic illness, each session includes a specific topic and guided discussion. Participants can engage at their comfort level—whether through listening, using the chat box, or sharing verbally with the group.

Our goal is to create an inclusive, supportive, and welcoming space for everyone.

Details:

  • Frequency: Twice a month
  • Registration: Advance registration is required.
  • Confirmation: Upon registering, you’ll receive an email with instructions to join the event.

Tips for Joining:
We recommend testing your Zoom link, camera, and audio setup beforehand. If you’re new to online meetings or encounter technical issues, visit the Teleconferencing Tips section on our website for assistance.
 
New blog post:

The Youngest Victims: A Mother’s Perspective on Long COVID Research and the ME/CFS Reality We’ve Lived
Bateman Horne Center said:
As a mother who has watched my child suffer with ME/CFS for ten years, I felt a complex mix of validation and heartbreak reading the groundbreaking study published in JAMA Pediatrics. Finally, researchers are documenting what I’ve witnessed firsthand: viruses can trigger devastating, chronic illness in children, even babies and toddlers. But this validation comes with the bitter knowledge of how long it has taken for the medical community to take post-infectious illness in children seriously.

The Study That Should Change Everything

The research, part of the NIH-funded RECOVER initiative, followed over 1,000 children across 30 medical centers from March 2022 to July 2024.

The findings are stark:

14% of infants under age 2 and 15% of children aged 3-5 experienced persistent symptoms lasting at least three months after COVID-19 infection.
Click to expand...
What This Means for All Our Children

This study represents a critical turning point. For too long, children with post-infectious illnesses like ME/CFS have been medical orphans—suffering without proper recognition, research, or treatment options. The fact that we now have robust data showing that even babies can develop chronic, debilitating symptoms after an infection should be a wake-up call to the entire medical community.
Click to expand...

The study being discussed in the blog post:
Characterizing Long COVID Symptoms During Early Childhood
 
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batemanhornecenter.org

Online Support Group

These support groups are tailored for individuals living with ME/CFS, FM, Long COVID, and co-existing conditions. Supporters and loved ones are also welcome to join.
batemanhornecenter.org batemanhornecenter.org

Online Support Group

July 15 @ 1:00 pm - 2:00 pm MDT
8 PM in Great Britain & Ireland
find the time in your time zone here:
www.timeanddate.com

Event Time Announcer - Tuesday, July 15: free, professionally facilitated online support group

Event Time Announcer shows time for Tuesday, July 15: free, professionally facilitated online support group in locations all over the world. In Salt Lake City it happens on Tuesday, 15 July 2025, 13:00:00.
www.timeanddate.com www.timeanddate.com

Topic to be announced.

» Click here to register

Description:
These support groups are tailored for individuals living with ME/CFS, FM, Long COVID, and co-existing conditions. Supporters and loved ones are also welcome to join.

Led by a licensed professional with personal experience managing complex chronic illness, each session includes a specific topic and guided discussion. Participants can engage at their comfort level—whether through listening, using the chat box, or sharing verbally with the group.

Our goal is to create an inclusive, supportive, and welcoming space for everyone.

Details:

Frequency: Twice a month
Registration: Advance registration is required.
Confirmation: Upon registering, you’ll receive an email with instructions to join the event.


Tips for Joining:
We recommend testing your Zoom link, camera, and audio setup beforehand. If you’re new to online meetings or encounter technical issues, visit the Teleconferencing Tips section on our website for assistance.
 
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Yann04 said:
Bateman Horne center asking for submissions from people with severe ME. But very little detail provided, the information is only accessible via video, which many pwSevereME have trouble with and it’s a 4 day deadline. Was pretty disappointing to see because anyone who’se okayed that doesn’t really understand severe ME.

Direct link
Click to expand...

Yeah if I had a couple of weeks or a month I could maybe do something but 4 days is nowhere near enough time
 
Incase anyone would like to submit they’ve replied to the people complained with a written thread. I think I’m just going to submit something I tweeted a while ago about severe ME, since I don’t have energy to write something new due to deadlines.
 
New blog post from Bateman Horne Center:

An AI Map of a Puzzling Illness: How BioMapAI Tries to Decode ME/CFS, One Symptom at a Time
Bateman Horne blog post said:
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.
Click to expand...

Link to study from blog post:

AI-driven multi-omics modeling of myalgic encephalomyelitis/chronic fatigue syndrome

The forum thread for this study is here:

https://www.s4me.info/threads/ai-dr...-syndrome-2025-xiong-et-al.39136/#post-627050
 
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batemanhornecenter.org

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…
batemanhornecenter.org batemanhornecenter.org

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.
Click to expand...
 
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.
Click to expand...
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
Click to expand...

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.
Click to expand...

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.
 
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