USA: News from the Bateman Horne Center

ahimsa · May 3, 2025

Online Support Group from Bateman Horne Center

Topic: Love Relationships and Illness

Tuesday, May 20, 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...ships+and+Illness&iso=20250520T13&p1=220&ah=1

Advance registration required - Registration link

forestglip · May 9, 2025

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and infection-associated chronic conditions (IACCs) spend years searching for answers—only to be met with dismissal, outdated advice, or clinicians unsure how to help.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.
Click to expand...

Info page

PDF of Clinical Care Guide

Utsikt · May 9, 2025

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.

Yann04 · May 13, 2025

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.
Click to expand...

is great.

It’s a shame they don’t really acknowledge that sentence when recommending counselling and stuff.

Eleanor · May 13, 2025

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

ahimsa · May 20, 2025

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.
Click to expand...

Dolphin · May 31, 2025 at 2:56 PM

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.

ahimsa · May 31, 2025 at 5:53 PM

https://batemanhornecenter.org/event/online-support-group-97/

Online Support Group
Topic: Radical Acceptance: Embracing Life without Condition

June 17 @ 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...without+Condition&iso=20250617T13&p1=220&ah=1

Registration link

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