USA: News from the Bateman Horne Center

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.
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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.
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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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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
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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.
 
A Roadmap to Better Care: Clinical Care Guide for ME/CFS, Long COVID & Infection-Associated Chronic Conditions
Too often, people living with ME/CFS, Long COVID, and infection-associated chronic conditions (IACCs) spend years searching for answers—only to be met with dismissal, outdated advice, or clinicians unsure how to help. The Bateman Horne Center (BHC) is working to change that.

We’re proud to announce the release of our Clinical Care Guide for Managing ME/CFS, Long COVID, and IACCs—a robust resource that translates clinical expertise and lived experience into a step-by-step framework for assessment, diagnosis, and ongoing care.

A Tool for Patients and Providers
This guide isn’t just for healthcare professionals—it’s for anyone navigating these complex, often disabling conditions. Whether you’re a patient, caregiver, or advocate, the guide offers language, tools, and validation to bring to your next medical appointment. It’s designed to bridge the gap between lived experience and clinical understanding.

If you’ve ever heard “your labs are normal,” or felt pressured to “just push through,” this resource may help change the conversation.

And if you’re a provider unsure how to support patients with post-viral illness, this guide offers a clear, evidence-informed roadmap—grounded in science, centered on function, and shaped by real-world care.

What the Guide Covers
Developed by Bateman Horne Center clinicians and partners with deep experience in ME/CFS and Long COVID, the guide provides:
  • Diagnostic criteria for ME/CFS, with guidance for recognizing overlaps with Long COVID and other IACCs

  • Practical clinical tools like the Good Day/Bad Day Questionnaire and NASA Lean Test for assessing impairment and orthostatic intolerance

  • Management strategies for post-exertional malaise (PEM), cognitive dysfunction, sleep disruption, pain, and more

  • Guidance for disability documentation and school/workplace accommodations

  • Special sections for pediatric and severely affected patients, as well as allied professionals (physical therapy, occupational therapy and speech language pathology)
Each chapter is written with clarity and empathy, providing both clinical rigor and real-life relevance.
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Info page

PDF of Clinical Care Guide
 
forestglip said:
A Roadmap to Better Care: Clinical Care Guide for ME/CFS, Long COVID & Infection-Associated Chronic Conditions

Info page

PDF of Clinical Care Guide
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Based on searches and titles:
Goes beyond the evidence in many recommendations, talk about hEDS, MCAS, CCI, etc., although with some caveats.

Not sure I would give it to my GP. Although it might have some good sections if you go looking.
 
forestglip said:
A Roadmap to Better Care: Clinical Care Guide for ME/CFS, Long COVID & Infection-Associated Chronic Conditions

Info page

PDF of Clinical Care Guide
Click to expand...
The severe/very severe Chapter is suprisingly well done.

Especially this part:
Patients with severe ME/CFS are extremely sensitive to interventions. Even seemingly benign activities-turning a patient, assisting with toileting-can trigger catastrophic PEM and deterioration. All care must proceed with extreme caution and respect for patient signals.
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is great.

It’s a shame they don’t really acknowledge that sentence when recommending counselling and stuff.
 
forestglip said:
A Roadmap to Better Care: Clinical Care Guide for ME/CFS, Long COVID & Infection-Associated Chronic Conditions

Info page

PDF of Clinical Care Guide
Click to expand...

Their 'Good Day/Bad Day Questionnaire' is quite interesting. Don't think I've seen a discussion of it here? (Keywords are too short to search the forums.) It's obviously a blunt instrument, but giving answers for both ends of a spectrum of functioning might be more helpful than the majority of questionnaires which just tell you to pick 'an average day'.

https://batemanhornecenter.org/wp-c...ad-Day-Questionnaire-Fillable-V3-6_6_2022.pdf
 
New blog entry from Bateman Horne Center:

A New Path for ME/CFS and Long COVID Research
Bateman Horne Center said:
On National Clinical Trials Day [May 20], we celebrate the scientific backbone of modern medicine: the clinical trial. But while many people picture trials run by major pharmaceutical companies testing billion-dollar drugs, there’s another kind of research effort quietly transforming patient care—often with fewer resources and far less recognition.

These are investigator-initiated trials, or IITs. IITs are clinical studies designed and led by independent researchers, not pharmaceutical companies, to answer real-world medical questions that directly reflect the needs of patients.

Unlike industry-sponsored studies, which are often focused on securing FDA approval and bringing marketable drugs to pharmacy shelves, IITs start somewhere else entirely: with real patients and real clinical questions. These trials are conceived by frontline researchers and physicians who witness, firsthand, the unmet needs in their communities. For conditions like Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID, this kind of research isn’t just important—it’s essential.
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