Navigating the challenging world of ME/CFS and similar chronic complex diseases can be overwhelming, isolating and confusing. We would like to help you identify resources for education, support, and assistance. (Each image and underlined item below links to the resource it describes. Click on the link to directly access the resource.)
ME/CFS Clinics & Physicians
- Physician & Clinic Referral (Thank you to our partner, AMMES, for sharing this important resource for patients.)
Patient Support Groups – State Level
- For referral to Support Groups, Facebook and Yahoo groups, Meet Ups and other local support groups, please visit the AMMES website. Also, visit AMMES Useful Links for patient resources.
Patient Support, Information & Advocacy – National & International
- American ME & CFS Society (AMMES): Focused on the needs of patients, such as how to find a doctor, helpful treatments, etc.
- Associazione CFS onlus: Italy
- CFIDS & Fibromyalgia Self-Help: Online self-help courses to manage ME/CFS and fibromyalgia.
- CFS Associazione Italiana onlus: Italy
- CFSKnowledgeCenter: An open access website to provide information for those around the world who are affected by Chronic Fatigue Syndrome (ME/CFS)
- Action Chronic Immunological and Neurological Diseases (Action CIND): Canada
- Co-Cure ME/CFS & Fibromyalgia: Information Exchange Forum
- Emerge, Australia: Myalgic Encephalomyelitis / Chronic Fatigue Syndrome patient support and education.
- Health Rising: Up-to-date news by Cort Johnson about research for ME/CFS and fibromyalgia, plus a discussion forum.
- Hope 4 ME & Fibro: Northern Ireland
- International Support Fibromyalgia Network: Education, advocacy, and support for fibromyalgia patients
- Invest in ME Research: UK
- Irish ME/CFS Association: For patients in Ireland.
- Lyme Disease UK: Patient support in the UK.
- #ME Action: News and clearinghouse for advocacy efforts.
- MEadvocacy: Program of May12.org
- ME Association, UK: Informing and supporting those affected by ME/CFS.
- ME/cvs Vereniging: the Netherlands
- ME Global Chronicle: Newsletters with information from around the world.
- ME Research UK: Raise awareness and fund research
- ME Support Isle of Man
- National Fibromyalgia & Chronic Pain Association: Information on fibromyalgia.
- National ME/FM Action Network: Canada. Includes many documents translated to French.
- Partners Against Lyme: An alliance group of Lyme advocate associations.
- Phoenix Rising: Blog and discussion forum supporting people with ME/CFS.
- ProHealth: Supporting ME/CFS and fibromyalgia patients with targeted news, information, and nutritional supplements.
- RME Sweden: Organizes patients with ME in Sweden.
- Solve ME/CFS Initiative: Advocating for increased US funding and awareness.
- The ME/CFS Foundation South Africa: Organizes patients in South Africa.
- The Norwegian ME Association (Norges ME-forening): Norway
- Wake Up Call Beweging: Belgium
- Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer (Frontiers in Pediatrics)
- PDF of the monograph version of the Young Persons’ ME/CFS Primer by Peter Rowe, MD, Rosemary Underhill, MB, Kenneth J. Friedman, Ph.D., Alan Gurwitt, MD, et al in a Pediatric Primer monograph with index. (Video presentations available below in resources section for Professional Org./Info for Doctors section.)
- ME/CFS Fact Sheet: Educational Implications: Faith Newton, EdD, Deleware State University
- ME/CFS Fact Sheet: Classroom Accommodations: Faith Newton, EdD, Deleware State University
- ME/CFS School Fact Sheet: Resource for Parents, Educators & School Nurses: Faith Newton, EdD, Deleware State University
- ME/CFS Sample Physician Letter to School: Pediatric Sample Physician’s Letter: Faith Newton, EdD, Deleware State University
- CDC – Managing ME/CFS in Children and Adolescents: Fact Sheet for Healthcare Professionals
- CDC – Helping Your Child Manage Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Fact Sheet for Parents and Guardians
- Managing ME/CFS – A Guide for Young People: A book to help young patients successfully adapt to living with ME/CFS.
- ME in Children: by Dr. David S. Bell
- School Nurses Can Improve the Lives of Students with ME CFS October 2018: Faith Newton, EdD, Ken Friedman, PhD, & Beth Mattey, MSW, RN (Podcast)
- PEM Avoidance Toolkit: created by Jeff Hewitt, Sarah Hewitt, Dana Beltramo Hewitt, Dr. Bonilla, and Dr. Montoya and input from ME/CFS patients over the course of several patient workshops.
- Caregivers Guide by #MEAction
- Disability Insurance and ME B Handel July 2017: Author Brent L. Handel, J.D., Q.C.
- US Disability Rights Information: Barbara B. Comerford. Esq.
- ME/CFS ERISA and Individual Disability Income Long Term Disability Insurance Claims: Author Barbara B. Comerford, Esq.
- Estimating the disease burden of ME/CFS in the United States and its relation to research funding (Research Gate): Article by Mary Dimmock, Leonard Jason and Arthur Mirin.
- M.E. and ME, A doctor’s struggle with chronic fatigue syndrome. Author Dr. K. N. Hng. A book sharing a doctor’s personal experience with ME/CFS.
- Co-Cure ME/CFS & Fibromyalgia: A listserve for ME/CFS and fibromyalgia research news.
- Thirty Years of Disdain – How HHS Buried ME: Lengthy essay by Mary Dimmock and Matthew Lazell-Fairman giving a history of the U.S. government’s response to ME.
- Paradigm Change: Website with two books on mold avoidance and the possible link mold has to neuro-immune diseases.
- ME/CVS Vereninging: Videos “Science to Patients.”
- National Academy of Medicine (formerly Institute of Medicine): Gives key facts about ME/CFS.
- Chronic Fatigue Syndrome / ME – Symptoms, Diagnosis, Treatment: A book with a clinician’s perspective of diagnosing ME/CFS and how a patient can best cope with the disease.
- ME/CFS Research Summary: Literature review by Jaime Seltzer, 2017.
- Brain donor project.
Professional Organization and Information for Doctors
- Centers for Disease Control & Prevention (CDC): Information for Healthcare Providers
- International Association for ME/CFS (IACFSME): Promoting the exchange of ideas.
- National Academy of Medicine (formerly Institute of Medicine): A clinicians’ guide.
- The International Association for CFS/ME Physician Primer: Second edition.
- Dr. Peter Rowe and Dr. Nigel Speight, discuss pediatric ME/CFS diagnosis and management, as related to the Pediatric Primer, in two short videos for medical professionals. (Shared with permission from Voices from the Shadows.)
- Myalgic Encephalomyelitis – Adult & Pediatric International Consensus Primer: 2012
- Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: What Every Family Physician Needs to Know: Article in NY State Academy of Family Physicians.
- ILADS: A medical professional organization for those treating and researching Lyme disease.
Information from U.S. Government Agencies
- CDC: Information on ME/CFS.
- New York State Department of Public Health ME/CFS page
- Trans National Institute of Health (NIH) ME/CFS Working Group
Resources to share with your family and friends
- OMF Videos: Linda Tannenbaum, Ronald W. Davis, PhD, and others talk about ME/CFS
- Ted Talk: Jennifer Brea, What happens when you have a disease doctors can’t diagnose
- Sundance Award Winning Documentary – Unrest (2017)
- Documentary by Susan Douglas – What About ME (2016)
- Documentary by Ryan Pryor – Forgotten Plague (2015)
- Award Winning animated documentary by Alexandra Hohner – M.E. (2018)