USA: News from the Bateman Horne Center

Dolphin · Dec 23, 2024

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

Click to expand...

Dolphin · Dec 24, 2024

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

Dolphin · Dec 26, 2024

Lunch & Learn Recap: My Favorite Things
(December 19, 2024)

https://batemanhornecenter.org/wp-content/uploads/2024/12/20241219-Lunch-Learn-Recap.pdf

https://twitter.com/user/status/1872430643185102918

Click to expand...

ahimsa · Jan 11, 2025

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

ahimsa · Jan 11, 2025

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

Dolphin · Jan 9, 2025

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

Click to expand...

ahimsa · Jan 13, 2025

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/

Dolphin · Jan 31, 2025

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.

ahimsa · Feb 1, 2025

Tuesday, February 18: Free, professionally-facilitated online support group

Topic: When Things Get Tough: Managing Difficult Emotions with Chronic Illness: Guilt and Shame

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

Advance Registration Required. Register here:

https://batemanhornecenter.zoom.us/...-morjIqEtxRKwFYmGTXYkHyL3Vhbsys#/registration

Find the time in your time zone here:

https://www.timeanddate.com/worldcl...:+Guilt+and+Shame&iso=20250218T13&p1=220&ah=1

ahimsa · Feb 15, 2025

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

Dolphin · Mar 1, 2025

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

Click to expand...

ahimsa · Mar 1, 2025

Tuesday, March 18: Free, professionally-facilitated online support group

Topic: When Things Get Tough: Managing Difficult Emotions with Chronic Illness: Depression

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

Advance Registration Required. Register here:

https://batemanhornecenter.zoom.us/...-ivqzMjG9A2XTRwqqGLar8iHTuYELRv#/registration

Find the time in your time zone here:

https://www.timeanddate.com/worldcl...lness:+Depression&iso=20250318T13&p1=220&ah=1

ahimsa · Mar 7, 2025 at 5:26 PM

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.
Click to expand...

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.
Click to expand...

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