Patient Resources

Learn to read the results from your bloodwork

Health Rising by Cort Johnson is “dedicated to providing timely, accurate information to people with chronic fatigue syndrome (ME/CFS) and fibromyalgia.”

ME/CFS & Fibromyalgia Self Help – The ME/CFS and Fibromyalgia Self-Help Program is a non-profit organization offering a suite of low-cost and free online self-help courses, plus other resources for people affected by ME/CFS and fibromyalgia.

These resources by the manufacturer for Aubagio (teriflunamide) are specifically for relapsing MS but are still helpful, including downloadable guides for thinning hair, symptom tracker and nausea and an upset stomach.

Patient Toolkit by the CDC. ME/CFS educational tools to help patients, their families, and caregivers manage their healthcare provider visits. Includes 6 different PDF printables. (5 / 5)

Advocacy

https://www.actionforme.org.uk/get-support-now/help-and-support-for-you/information-support-and-advocacy/

https://theabilitytoolbox.com/self-advocacy-skills-disability-chronic-illness/

Apps

Cures A – Z “Cures A-Z is a medical guide for people who prefer to use natural therapies to manage health issues when they can, but are content to use prescription therapies when they’re the better choice. Developed by world-renowned integrative physician, researcher, and best-selling author Jacob Teitelbaum, M.D., along with his wife, nutritionist Laurie Teitelbaum, Cures A-Z shows you when to use either approach, or when to combine the two, in order to produce the healthiest and most effective treatments for common health issues.”

Assessments

Bell CFIDS Ability Scale

Chalder Fatigue Questionnaire

KATZ Scale of ADL’s By the Alzheimer’s Association

Blogs

AMMES Financial Crisis Fund – “The AMMES financial crisis fund (for ME/CFS patients) is intended to assist patients who find themselves unable to meet a critical need. These needs can include anything from making a rent payment to paying a utilities bill, making a copay or any other out-of-pocket medical expense, or any need which is vital to well-being.”

CFS/ME Navigator – a fellow patient offering resources

http://cfstreatment.blogspot.com/ – Onward Through the Fog. “A practical resource for treating CFS/ME … coping tips, specialists, books, articles, research, and advice on how to recover from this debilitating illness.”

~~Onward Through the Fog~~ – Last updated in 2017 but is still getting recommended for some reason. (1 / 5)

http://www.occupycfs.com/

https://thoughtsaboutme.com/ a blog written by a former attorney stricken with ME/CFS. The blog is outdated (2017) but still holds valuable information.

https://livingwithchronicfatiguesyndrome.wordpress.com/ last updated in 2019

Books

It’s Not Hypochondria, It’s Mitochondria

~~From Fatigued to Fantastic 4th Edition~~ by Jacob Teitlebaum, MD 2021. The SHINE protocol which stands for Sleep, Hormones, Immunity/Infections, Nutrition and Exercise as able. (1 / 5)
~~https://www.vitality101.com/~~

~~The Fatigue and Fibromyalgia Solution: The Essential Guide to Overcoming Chronic Fatigue and Fibromyalgia, Made Easy!~~ By Jacob Teitlebaum, MD 2013. He credits Trigger Point Manual by Professor Janet Travell, the White House physician for Presidents Kennedy and Johnson, for breaking ground in the treatment of ME/CFS and Fibromyalgia. (1 / 5)

Discussion Forums

Phoenix Rising is the largest ME/CFS forum developed by Cort Johnson (5 / 5)

ME board on Stuff That Works

ME/CFS & Fibromyalgia Self Help – “The ME/CFS and Fibromyalgia Self-Help Program is a non-profit organization offering a suite of low-cost and free online self-help courses, plus other resources for people affected by ME/CFS and fibromyalgia.” They offer extremely affordable online classes for managing the ME life… Once the introductory course is completed they make a discussion forum available to all alumni of the course.

Dysautonomia

Dysautonomia Support Network on Facebook

The Dysautonomia Project’s definitive guide is a “much-needed tool for physicians, patients, or caregivers looking to arm themselves with the power of knowledge. It combines current publications from leaders in the field of autonomic disorders with explanations for doctors and patients about the signs and symptoms, which will aid in reducing the six-year lead time to diagnosis.”

Guidebooks

ME/CFS Guidebook by the Bateman-Horne Center

Handouts for Providers

Crashcare Survival Guide by the Bateman-Horne Center

Managing PEM in ME/CFS by the CDC is a wonderful explanation of PEM and gives advice about supporting patients in staying within their “energy envelop”; pacing. (5 / 5)

ME/CFS educational tools to help patients, their families, and caregivers manage their healthcare provider visits by the CDC (Center for Disease Control). Includes handouts and checklists for preparing to talk to a provider, for the day of the office visit, after the office visit and general hints, tips and tricks.

This handout is for doctors who are recommending GET (Graduated Exercise Therapy) for Chronic Fatigue patients. It gives medical evidence of the dangers of this therapy. By the Workwell Foundation

Hotlines

https://www.actionforme.org.uk/get-support-now/help-and-support-for-you/listen-to-me-helpline/

Medical Journals, See

Migraines

What’s the Difference between a headache and a migraine? By Womens Health

Movies

Unrest by and starring Jennifer Brea is currently (10/13/2022) streaming free on Netflix. “In this heart-wrenching documentary, a 28-year-old Ph.D. student turns the camera on herself to capture her struggles with chronic fatigue syndrome.”

Residential Programs

HOPE in Colonial Heights, Virginia, USA

YouTube

Broken Battery

CENTER FOR SOLUTIONS FOR ME/CFS Video Series- Research center at Columbia University, committed to understanding the pathogenesis of ME/CFS. They offer a video series of their researchers answering questions submitted by the ME/CFS community.

Dr. Lucinda Bateman of the Bateman-Horne Center offers this “6-part series (that) takes viewers through the diagnostic workup and management of the most common symptoms associated with ME/CFS, fibromyalgia, and related conditions. (5 / 5)

International

Emerge Australia

UK

Befriending Network – Provides telephone visits as well as in home visits

United States

National Council for Independent Living –

Virginia

https://www.volunteermatch.org/search/org27963.jsp – A volunteer group in the greater Richmond area that builds wheelchair ramps

Chesterfield-Colonial Heights Department of Social Services is a combined agency serving both the County of Chesterfield and the City of Colonial Heights. Provides referrals

https://www.chesterfield.gov/666/Financial-Assistance

https://www.chesterfield.gov/188/Aging-and-Disability-Services

https://disabilitynavigator.org/ an information portal “Your Nonprofit Guide to Disability, Aging and Veterans’ Services in Virginia”