USA: News from the Bateman Horne Center

Dolphin said:
Free, professionally-facilitated online support group
Topic: Facing the Holidays with Chronic Illness
https://batemanhornecenter.org/event/online-support-group-82/

Tuesday, December 17

1 PM MST/3 PM ET/8 PM in Great Britain & Ireland

Find the time in your time zone here
https://www.timeanddate.com/worldclock/fixedtime.html?msg=Tuesday,+December+17+Free,+professionally-facilitated+online+support+group&iso=20241217T13&p1=220&ah=1

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Longer description:

Online Support Group
December 17 @ 1:00 pm - 2:00 pm MST
Free
Online Support Group
Topic: Facing the Holidays with Chronic Illness
Support Group Format
Both monthly support groups are designed to include people with
ME/CFS, FM, Long COVID, and co-existing conditions. We also welcome
supporters and loved ones.

These sessions are led by a licensed professional who has personal
experience navigating life while living with a complex chronic
illness. Each session includes a topic and guided discussion.
Participants are encouraged to participate to their comfort level
which may include listening, communicating in the chat box, and/or
sharing verbally with the group.

We strive to foster an inclusive and accepting environment for all!

Advance Registration Required. Click here to register
https://batemanhornecenter.zoom.us/meeting/register/tZcvcOyrrT4tHdGd5qVBq8sva4Y-6tRVSEoB

Upon registration, you will receive a confirmation email containing
instructions on how to join the group event. We recommend attendees
test the link, their cameras, and speakers/headphones prior to
joining.
Click to expand...
Support Group Recap: Facing the Holidays with Chronic Illness
December 17, 2004

https://batemanhornecenter.org/wp-content/uploads/2024/12/20241217-Support-Group-Recap.pdf

Extracts:
—-
“Participant shared that she experiences so much isolation it is challenging to make herself leave a social event before it causes PEM [post-exertional malaise]”
—-
“Anything worth doing is worth doing slowly with many breaks”
---
“I let my family know I can't cook, clean, or sit up for long periods. I volunteered to do some shopping, which I could do online and while horizontal, and contribute grocery money.”
---
Participant refers to her illness as “the baby” such as “the baby needs to lie down” or the baby needs to be fed by someone else.” This helps to remind the participant that it is not her fault.
---
Participant shared that it took four years to accept that she isn’t going home for Christmas. Now that she has accepted her limitations, she is getting creative such as doing a family Zoom and joining online hobby and friendship groups.
---
Participant shared that her mother and sibling are begging her to travel several states away to visit them for the holidays. She decided to visit them at another time of the year when there is less holiday stress.

https://twitter.com/user/status/1870944600820773186
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Dolphin said:
https://batemanhornecenter.org/event/online-support-group-81/

Online Support Group

December 10 @ 1:00 pm - 2:00 pm MST/8 PM in Great Britain & Ireland

Find the time in your time zone here:
https://www.timeanddate.com/worldclock/fixedtime.html?msg=Tuesday,+December+10:+Free,+professionally-facilitated+online+support+group&iso=20241210T13&p1=220&ah=1

Free

Topic: Attending to Loneliness

Support Group Format

Both monthly support groups are designed to include people with ME/CFS, FM, Long COVID, and co-existing conditions. We also welcome supporters and loved ones.

These sessions are led by a licensed professional who has personal experience navigating life while living with a complex chronic illness. Each session includes a topic and guided discussion. Participants are encouraged to participate to their comfort level which may include listening, communicating in the chat box, and/or sharing verbally with the group.

We strive to foster an inclusive and accepting environment for all!

Advance Registration Required.
Click to expand...
Support Group Recap: Attending to Loneliness
December 10, 2024

https://batemanhornecenter.org/wp-content/uploads/2024/12/20241210-Support-Group-Recap.pdf
 
Tuesday, January 14: Free, professionally-facilitated online support group

https://batemanhornecenter.org/event/online-support-group-86/

Topic: Using Effective Coping Techniques for Living with Chronic Illness

1PM MT/3 PM ET/8 PM in Great Britain & Ireland

Advance Registration Required. Register here:

https://batemanhornecenter.zoom.us/...-CsrDMvHdShJnohEdXts7Fi7yOBvXjR#/registration

Find the time in your time zone here:

https://www.timeanddate.com/worldclock/fixedtime.html?msg=Free+Online+Support+Group:+Using+Effective+Coping+Techniques&iso=20250114T13&p1=220&ah=1
 
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Tuesday, January 21: Free, professionally-facilitated online support group

https://batemanhornecenter.org/event/online-support-group-87/

Topic: Using Boundaries to Improve the Illness Experience

1PM MT/3 PM ET/8 PM in Great Britain & Ireland

Advance Registration Required. Register here:

https://batemanhornecenter.zoom.us/...-GqrT8uG91TcVrcsS-qK3ZusCK4--ZK#/registration

Find the time in your time zone here:

https://www.timeanddate.com/worldclock/fixedtime.html?msg=Free+Online+Support+Group:+Using+Boundaries+to+Improve+the+Illness+Experience&year=2025&month=Jan&day=21&hour=13&min=0&sec=0&p1=220&ah=1
 
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Bateman Horne Center:

Catch Up or Revisit! Whether you attended or missed our third webinar co-hosted with Solve ME, Severe ME/CFS: Care, Rights & Research, we've got you covered.

Medical Panel highlights strategies to overcome barriers in providing medical care for those with Severe ME/CFS.

Moderated by Dr. Hoppers, with expert insights from Dr. Bateman, Dr. Muirhead, and Theresa Dowell, DNP, PT.

Watch the full discussion: https://loom.ly/M5SVKwI

Read the transcript: https://loom.ly/peaAtdo

Explore the resource guide: https://loom.ly/V_EJA64

https://twitter.com/user/status/1877143764289855857
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New blog post (Jan. 10, 2025) by Suzanne D. Vernon:

COVID-19 Triggers ME/CFS

https://batemanhornecenter.org/covid-19-triggers-me-cfs/

(line breaks added, bolded text is from the original blog post)
Suzanne D. Vernon said:
The RECOVER study, which has collected data from more than 15,000 adult participants over the past four years, provided us with an unprecedented opportunity to determine whether ME/CFS occurred after being sick with COVID-19 and the overlap between ME/CFS and Long COVID.

In a paper published today in the Journal of General Internal Medicine, we found that among participants infected with SARS-CoV-2, the incidence of ME/CFS—defined using the Institute of Medicine (IOM) diagnostic criteria—was 15 times higher than pre-pandemic rates.

Of the 4,515 participants who enrolled within 30 days of contracting COVID-19, 73 developed ME/CFS at least six months post-infection. In total, 531 participants met ME/CFS criteria, translating to a prevalence of 4.5% among those infected—nearly eight times higher than uninfected participants.

This prevalence is five times higher than pre-pandemic estimates and underscores the severe and lasting impact of COVID-19 on public health.

There has been a lot of discussion about whether ME/CFS and Long COVID are the same. RECOVER has helped us understand that ME/CFS is a subset, likely a severe subset, of the much larger Long COVID group.

Strikingly, 90% of these post-COVID-19 ME/CFS cases clustered with the most symptomatic and severe cases of Long COVID, highlighting the overlap between these two conditions.

This finding reinforces what we at BHC have long known: ME/CFS is not only a real and diagnosable condition, but it is also a disabling disease that demands attention, especially in the wake of a global pandemic.
Click to expand...

At the bottom of the blog post there is this text (missing an end quote):

Link: Journal of General Internal Medicine, “Incidence and Prevalence of Post‑COVID‑19 Myalgic Encephalomyelitis: A Report from the Observational RECOVER‑Adult Study.​

But I don't see an actual link to the study she is discussing.

Update: OOPS! The post on Bluesky was about a different topic, sorry!

EDIT: We now have a forum thread for the study mentioned in this blog post.

https://www.s4me.info/threads/incid...tional-recover-adult-study-2024-vernon.42102/
 
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https://batemanhornecenter.org/event/online-support-group-88/

Online Support Group

February 11 @ 1:00 pm - 2:00 pm MST

8 PM in Great Britain & Ireland

Find the time in your time zone here:
https://www.timeanddate.com/worldcl...ine+support+group&iso=20250211T13&p1=220&ah=1

Topic: Self-compassion Amidst Chronic Illness

» 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.
 
Thursday, February 20: Patient-led, community-focused event on Zoom

Topic: Shaping Our Experience Through Thoughtful Input

11:30 am - 1:00 pm Mountain Time
Bateman Horne Center said:
This patient-led, community-focused event is hosted on the Bateman Horne Center’s Zoom platform and designed to provide individuals living with chronic illnesses a welcoming space to connect, share, and learn from one another.

Each 90-minute meeting includes:
  • A brief presentation by a volunteer presenter on a topic of their choice
  • A Q&A session to explore the topic further
  • Breakout rooms to discuss a fun, engaging question and build connections
Whether you’re living with a chronic illness, a family member, or a friend looking to understand and support, these gatherings create a warm, inclusive space to ease isolation and foster meaningful connections. Resources shared by the presenter will also be emailed after the meeting.
Click to expand...

Register here:

https://batemanhornecenter.zoom.us/...O-opjgsE9G7Tn6KlaGi35fGrjxShZLH#/registration

Find the time in your time zone here:

https://www.timeanddate.com/worldcl...ful+Input&iso=20250220T1130&p1=220&ah=1&am=30
 
Tuesday, March 11: Free, professionally-facilitated online support group

https://batemanhornecenter.org/event/online-support-group-90/

Online Support Group

March 11 @ 1:00 pm - 2:00 pm MDT
7 PM in Great Britain & Ireland

Find the time in your time zone here:
https://www.timeanddate.com/worldclock/fixedtime.html?msg=Tuesday,+March+11:+Free,+professionally-facilitated+online+support+group&iso=20250311T13&p1=220&ah=1

Topic: My Illness is Real: Surviving Invalidating Relationships and Experiences

» 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.

https://twitter.com/user/status/1895839897745080358
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Last edited by a moderator:
New blog post:

A Common Disease Hidden in Plain Sight
Batemen Horne Center said:
Why ME/CFS Needs to be Recognized Now

February often brings conversations about rare diseases—conditions affecting fewer than 200,000 people in the U.S. ME/CFS doesn’t fit that definition.

Yet, we chose to highlight it during Rare Disease Month not because it is rare, but because it remains rarely acknowledged, underserved, and underfunded in both the medical and research communities.

With an estimated 5 to 9 million people affected in the U.S. alone—and many more meeting diagnostic criteria following COVID-19—ME/CFS is far from uncommon. The real challenge isn’t how many people have it, but how often it is misunderstood, overlooked, and left out of mainstream medical care.
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Bateman Horne Center said:
Despite its widespread impact, up to 90% of people with ME/CFS remain undiagnosed, often after years of searching for answers. Many experience medical gaslighting, misdiagnoses, and treatments that fail to account for the disease’s hallmark symptom: post-exertional malaise (PEM)—where even minor exertion can lead to debilitating symptoms and functional decline.
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Tuesday, April 8: Free, professionally-facilitated online support group

https://batemanhornecenter.org/event/online-support-group-92/

Online Support Group

April 8 @ 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=20250408T13&p1=220&ah=1

Topic: Getting Unstuck in Stuck Places

» 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.
 
Tuesday, April 15: Free, professionally-facilitated online support group


https://batemanhornecenter.org/event/online-support-group-93/

Online Support Group

April 15 @ 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=20250415T13&p1=220&ah=1

Topic: Re-introducing Peace, Happiness and Joy to the Illness Experience

» 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 video from Bateman Horne Center (12 minutes long):

Breaking New Ground in Medical Education: Insights from Dr. Lucinda Bateman
YouTube Summary said:
In the ever-evolving landscape of healthcare, continuous education and adaptation are critical. A key initiative advancing medical education for multi-system chronic complex diseases like ME/CFS is the collaboration between Open Medicine Foundation (OMF) and Bateman Horne Center.

Dr. Danielle Meadows, OMF's Vice President of Research Programs and Operations, recently spoke with Dr. Lucinda Bateman, Chief Medical Officer of the Bateman Horne Center, about ongoing efforts to improve medical education in this field.

We invite you to watch their conversation to gain insights into the challenges and opportunities in medical education for ME/CFS and related conditions
Click to expand...
I have not watched this video myself.
 
From Facebook:

Part 2: Understanding Pediatric Long COVID & ME/CFS Amy Mooney, MS, OTR/L, dives into the impact of Long COVID and ME/CFS in children, and how healthcare providers can help these young patients manage their symptoms with more effective, compassionate care.

In her presentation, she discusses:

1️⃣ The unique symptoms and daily challenges kids with Long COVID and ME/CFS face

2️⃣ The “Push-Crash” cycle and strategies to break it

3️⃣ Non-pharmacological approaches to improving the quality of life

4️⃣ Case examples and the importance of pacing for symptom management

By understanding the experiences of these children, we can offer better, more empathetic care. Learn how to make a difference! Watch the full presentation here: https://loom.ly/44buqr8 #LongCOVID #MECFS #PediatricCare #OTandPT #PacingForPEM #ChildHealth University of Utah Health #PediatricME/CFS #PediatricLongCOVID
 
From Facebook:


Long COVID & ME/CFS in Children & Adolescents

Long COVID isn't just a problem for adults—children and teens are also suffering from its debilitating impact. As many as 5.8 million children in the U.S. are affected, and far too often, they're overlooked or dismissed.

From extreme fatigue and cognitive dysfunction to GI issues and heart problems, Long COVID presents in many ways and can impact every aspect of a child's life, from school to simple daily activities.

Dr. Melanie Hoppers, a physician with Bateman Horne Center, explains how crucial it is for healthcare providers to recognize and treat these chronic conditions. Early intervention and proper management, can make a huge difference for children and teens.

It's time we give #LongCOVID and #MECFS the attention they deserve-so young people can get back to being kids. Let's prioritize their health, their future, and their voices. Watch the full presentation: https://loom.ly/uVIW5TU #PediatricCare #PediatricMECFS #PediatricLongCOVID #ChronicIllness @openmedicinefoundation
 
https://batemanhornecenter.org/event/online-support-group-94/

Online Support Group

May 13 @ 1:00 pm - 2:15 pm MDT
8 PM in Great Britain & Ireland
Find the time in your time zone here:
https://www.timeanddate.com/worldcl...t-group-94/&iso=20250513T13&p1=220&ah=1&am=15

Topic: Tapping Into the Collective Wisdom of the Group

Join us for this special 75-minute awareness month support group where we will view the Reflections of ME/CFS video and have an open forum discussion. » Click here to register https://batemanhornecenter.zoom.us/meeting/register/tZAucOupqj0oGNF5qwDaoc36QxFMN_fzI-a1

Share Your Reflections of ME/CFS
You are seen and your experience matters. Help raise awareness of ME/CFS and Long COVID. Post a photo, short video, drawing, poem, or any creative expression on our online bulletin board that reflects your illness experience. Check out a previous video here .

Deadline: Sunday, May 11
Click here to upload: ME/CFS Reflections https://www.kudoboard.com/boards/zxuwzE0x

Support Group 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.
 
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