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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and infection-associated chronic conditions (IACCs) spend years searching for answers—only to be met with dismissal, outdated advice, or clinicians unsure how to help.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
Click to expand...
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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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.
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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.
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The study being discussed in the blog post:
Characterizing Long COVID Symptoms During Early Childhood
 
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