On this page, BHC provides tools for effective provider engagement, information on rights in employment and disability claims, and general health and wellness.
ME/CFS Crash Survival Guide
Description: This guidebook contains information on how to meet your critical needs during a crash, and also provides adaptive ways to conserve energy in everyday living with ME/CFS.
While this asset addresses ME/CFS, the content and concepts can be applied to other debilitating chronic illnesses such as FM, Long COVID, and orthostatic intolerance (OI). Access it here!
Good Day/Bad Day Questionnaire
Description: Communicating impaired function can be challenging for people ME/CFS, FM, OI, and Long COVID. In addition, clinicians often lack the time and tools to fully grasp the extent of impairment. BHC developed a simple questionnaire that helps patients to communicate the frequency, severity, and nature of their activity limitations.
Estimating the number of better (GOOD) versus worse (BAD) days and listing specific examples communicates the range of function.
Hours of Upright Activity (HUA), or time spent with feet on the floor (sitting with feet on the floor, standing, walking) versus time spent with feet elevated in 24 hours, takes a little thinking but clearly communicates tolerance for upright activity.
ER & Urgent Care Considerations for ME/CFS
Description: This handout provides basic advice and medical/scientific information about ME/CFS that can inform medical decisions in urgent, emergent, or hospital settings. Each page builds upon the next and has been separated for ease of review. Download it here.
Communicating with your Loved Ones
Believing the Loved One
Description: Written from a therapist’s perspective, this one-page letter addresses the importance of believing and validating the loved one’s experience with chronic illness.
Insights into My Chronic Illness
Description: Written from the perspective of an individual with chronic illness to a caregiver, friend, spouse, etc. This letter provides insight into the patient experience and how their network can support them.
Communicating with your Healthcare Provider
How to Communicate Effectively with your Provider
Description: This document addresses five common hurdles experienced by patients and medical providers. Get our tips and solutions on how to overcome them. We aim to help you get the most out of your time with your medical team. (October 2019)
Created by: Joyce Ferrone, FNP-BC, BHC Nurse Practitioner
Pre-visit Health Assessment
Description: This is a printable PDF that you can fill out prior to your medical visit. It serves as a condensed “snapshot” of your current wellness presentation and gives your medical team important information that will streamline your visit. (May 2020)
Overcoming Barriers to Access Care video
Description: Dr. Bateman shares her insights, tools and tips for communicating with your medical team about your complex chronic illness.(October 2019)
Presented by: Lucinda Bateman, MD, BHC Founder and Medical Director of BHC
Accommodation and Compliance: Chronic Fatigue Syndrome
Description: A general guide for work accommodations that can support an employee with ME/CFS and FM.
Presented by: Job Accommodation Network (JAN)
Your Employment Rights as an Employee with a Disability
Description: A guidance website outlining coverage and requirements of equal protection under the Americans with Disability Act.
Presented by: US Equal Opportunity Commission
Applying for Disability
How to Navigate Disability with ME/CFS
Description: This recorded webinar features legal and medical experts at they share their advice on applying, appealing, and documenting a case for disability insurance for ME/CFS. (April 2020)
Presented by: Solve ME/CFS and Bateman Horne Center
Disability and ME – CFS
Description: This is a rich resource guide aimed at both patients and medical providers.
Presented by: Centers for Disease Control (CDC)
The Massachusetts CFIDS/ME & FM Disability Handbook
Description: This information booklet is an extensive guide for those with ME/CFS and FM. Please be advised that this information was last updated on November 2015 and some of the information such as income limitations may have been updated. (November 2015)
Presented by: Massachusetts ME/CFS & FM Association
Workers with Long COVID-19: You May Be Entitled to Workplace Accommodations Dep of Labor July 2021 blog
Quality of Life Resources
Description: Meredith Mehner, LCSW, shares how to repair and nourish your relationship with your body while living with a complex chronic illness.
This presentation includes five self-guided questions for viewers to practice in their own time and within their own energy envelopes. (November 2020)
Presented by: BHC and Meredith Mehner, LCSW
Full video: 20 minutes
Video of guided questions (only): 8 minutes
The Psychology of Chronic Illness: Making it Normal
Description: A 6-part series reviewing and validating the psychological and social aspects of chronic illness. (March 2020)
Presented by: Timothy Weymann, LCSW, and BHC
Description: Linda Milne is a member of the BHC community who has navigated living with chronic illness while creating a fulfilling life. She moderates a panel discussion on living a life of quality, while living with ME/CFS and fibromyalgia. (November 2019)
Presented by: Linda Milne, Former BHC Board Member, and BHC
Description: A guidance for navigating relationships with friends and acquaintances, romantic partners, children, and medical providers.
Presented by: American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society
Description: This introduction to PEM provides insight into the debilitating nature of ME/CFS. (April 2020)
Presented by: Norwegian ME Association – Rogaland County with professional support from psychologist Ketil Jakobsen and pediatric neurologist Kristian Sommerfelt.
Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness
Description: Dr. Bateman and her co-committee members propose new diagnostic criteria that can be used in the real world by medical professionals so that patients can be diagnosed and receive much-needed treatment. This link provides free access to the full report, report brief, ME/CFS Clinicians Guide, Key Facts, Report Guide for Clinicians. (2015)
Presented by: The National Academies of Sciences, Engineering, and Medicine
Description: Provides information necessary for medical providers to understand, diagnose, and manage the symptoms of ME/CFS. (2014)
Presented by: IACFSME (International Association for CFS and ME)
Description: “Left Out” follows the ME/CFS community in Norway as they participate in and await the results of the Rituximab trial. (January 2020)
Presented by: Jonathan Borge Lie, UpNorth Film
Description: Jennifer Brea is about to marry the love of her life when she is struck down by a fever that leaves her bedridden. When doctors tell her “it’s all in her head,” she turns her camera on herself and her community as she looks for answers and fights for a cure. (2017)
Presented by: Jennifer Brea and Shella Films
Description: A journalist afflicted with ME/CFS embarks on a quest to find out why the medical system has neglected his disease and left millions sidelined from life. (2015)
Presented by: Ryan Prior