For ME/CFS, FM, ES and Chronic Pain
ME/CFS and FM Online Resources
US ME/CFS Clinician Coalition This website released in July 2020 has much of what you need to diagnose and manage ME/CFS in adults and children and the common associated conditions such as orthostatic intolerance and mast cell activation syndrome. There are videos on pacing and severe ME. There is information on documenting ME for disability purposes. The most comprehensive website written by the top US clinicians based on current evidence.
CFIDS Self Help An online education course with focus on pacing, sleep, diet and more. The inexpensive registration includes a free self-management book by founder Dr. Bruce Campbell PhD.
Post Exertional Malaise (PEM) Avoidance toolkit This toolkit is in development at the Stanford ME/CFS reserach program. Lots of useful information and tips about managing PEM.
CFS Health This is the home of Toby Morrison, an Australian who has recovered from ME/CFS and is sharing what he has learned with others. He has developed a coaching program (fee for service) and an extensive Youtube channel with over 100 videos walking people through designing their own recovery program - emphasis on pacing.
Mindfulness and Mental Health Online Resources
The Breath Project Developed by Calgary Gastroenterologist, Dr. Phil Blustein, The Breath Project introduces mindfulness meditation.
HeartMath The stress of everyday life is increased with a chronic condition. HeartMath is a biofeedback tool that helps people increase coherence between their heart, breathing and brain. Alberta Health Services supports HeartMath use across the province.
The Meaning of Life Experiment This free (donation encouraged) app consists of 30 video segments describing how the mind works, quantum physics and more and 30 meditations on topics such as: body awareness, expansion, compassion and more. The experiment is developed by Dr. Ashok Gupta the creator of the Amygdala Retraining Program a program designed to lessen the symptoms of ME/CFS and FM.
Cognitive Behavior Therapy for Insomnia (CBTi) can improve sleep in people with chronic insomnia even if they have a medical or mental health diagnosis. Go to cbtforinsomnia.com for information on an on-line course (running for 10 years) from Harvard for a nominal fee. The Sleepio app is very user friendly and evidence based (ie effective in research).
The Centre for Clinical Interventions offers detailed handouts on a host of useful topics such as assertiveness, building self compassion and finding balance.
Anxiety BC This website hosts a free course and many resources for adults and children with anxiety.
Symptom and Diet Tracking Apps
nutritiondata.com is a free website that provides detailed nutritional information when you enter your diet, such as how much protein, sugar or fat you are eating. You can determine if you are getting enough minerals, vitamins, amino acids and more.
myfitnesspal.com is a free website where you can enter your daily diet information. It does not give the same degree of detail as Cronometer but is easier to use.
cronometer.com is a free website that provides detailed nutritional information when you enter your diet intake. You can determine how much protein, sugar or fat you are eating. You can determine if you are getting enough minerals, vitamins, amino acids and more.
Available through Alberta Health Services
The Alberta Healthy Living program has numerous courses (all free) on topics of interest to people with ME/CFS. Enter Alberta Healthy Living Program in the search bar at albertahealthservices.ca
To access an online Chronic Pain Management lecture developed by the Calgary Chronic Pain Center for AHS, enter Chronic Pain Management in the search bar at albertahealthservices.ca
ME/CFS Education, Research and Advocacy
The National ME/FM Action Network Education, Research and Advocacy in Canada. The Network publishes four newsletters/year. The full text and overviews of the Canadian Consensus Guideline for ME/CFS and Fibromyalgia are available. There is free Disability Guide and Education Guide and a host of other information on their website.
Action CIND Provides support groups, services and education to individuals impacted by Chronic Immunological and Neurological Diseases (CIND) such as ME, CFS, FM and MCS/ES. They also promote May 12th International Awareness Day.
ME Society of Edmonton The Society is the longest existing in Canada. Yearly membership is $20 and compassionate memberships are available at no charge. The society publishes quarterly newsletters and offers a monthly support group. They are the only support group available in Alberta at this time.
Solve ME/CFS Initiative Formerly called the CFIDS Association of America, the SMCI has filled a gap as a major funder of medical research. They offer free webinars by top researchers. Subscribe to weekly research updates.
Chronic Illness Trauma Studies is a website created by Dr. Veronique Mead, a physician turned somatic psychotherapist who specializes in mind-body dialogue for individuals with chronic illness and unusual physical symptoms. Dr. Mead has ME/CFS and speaks from her personal experience. chronicillnesstraumastudies.com
Health Rising is a website on which patient advocate, Cort Johnson, and his staff summarize medical research in terms the average person can understand.
List of fragrance free products from the Canadian Mennonite University.
Books: ME/CFS, FM and ES
Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia. Alison Bested and Alan Logan 2nd edition 2008. The first comprehensive guide to self-management published in Canada. It is still current and very useful.
Let Your Light Shine Through: Strategies for Living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivities. Eleanor Stein 2012. This manual introduces patients to the most important self management strategies. eleanorsteinmd.ca/manual
Living a Healthy Life with Chronic Conditions. Kate Lorig, David Sobel and Virginia Gonzalez. James Bull. bullpub.com This book is the text for the Better Choices, Better Health program offered by Alberta Health Services. It can be purchased separately for those who are unable to attend a course in person.
Chronic Illness Workbook. Patricia Fennell. This book describes the phases of adjusting to a chronic condition. There are many exercises to facilitate self reflection. This book can be ordered from Dr. Fennell’s website. albanyhealthmanagement.com
Books: Pain, Mood, Sleep
Explain Pain. David Butler, Lorimer Mosely and Sunyata. 2003 Noigroup Publications. noigroup.com A clear and even humorous explanation of the biology of chronic pain.
The Feeling Good Handbook. David Burns. The classic approach to changing mood through cognitive therapy. For links to the book, Dr. Burns’ blog and a free podcast go to: feelinggood.com
Quiet your mind and get to sleep is one of many excellent books on Cognitive Behavior Thearapy for insomnia (CBTi) by Drs. Colleen Carney and Rachel Manber.
Neuroplasticity Books and Courses
The Brain’s Way of Healing. Norman Doidge. 2015 A book that gives hope that no matter what our age and how severe our problems, the brain can rewire to help us heal. normandoidge.com
Neuroplastic Transformation. Michael Moskowitz and Marla Golden. 2012 This manual walks readers through the biology of persistent pain and how to change the brain to decrease pain. Note this method is not yet proven by research. Click on the workbook tab at neuroplastix.com
You are the Placebo and other books by Joe Dispenza explain how we can generate our own placebo effect to feel better and improve health. Note this method is not yet proven by research. drjoedispenza.com
Dynamic Neural Retraining System This program teaches strategies to calm the part of the brain that can keep people in fight or flight. In some people this can lead to improvements in symptoms, especially chemical sensitivities for which there is no proven treatment. retrainingthebrain.com
For Health Care Professionals
Clinical Practice Guideline on ME/CFS for physicians in Alberta Published in 2016, this evidence informed guideline includes a handy diagnosis checklist and executive summary.
New US Clinical Guidelines for Diagnosing and Treating ME/CFS. What you need to know to screen a patient for ME/CFS in 6 short pages.
JAMA article by Harvard Professor Emeritus Dr. Anthony Komaroff. A concise summary of what is known about ME/CFS as of July 2019.
Guidelines Paper for Physicians comparing ME/CFS and depression/anxiety. Go to eleanorsteinmd.ca and look for Guidelines Paper under the publications tab.
Free resource for Family Physicians. Ten clinical cases. One hour of CPD on completion of the course.
2014 IACFS/ME Primer for Practitioners Developed by the IACFS/ME, the International Scientific Organization for ME/CFS (2014).
Centers for Disease Control ME/CFS resource page for health care professionals
All of these webinars were recorded in Calgary by Mike Finch of Self Connection Books. For each program purchase gives unlimited access to the recorded webinar, the powerpoint slides of the presenters, MP3 audio files of the presentations and where available answers to questions from the audience in person and online.
June 16, 2017 - Disability Supports in Canada: This is a set of recordings from the five presentations recorded in Calgary on June 16th, 2017 to both an in-house audience and to an online audience across Canada. The content of these presentations will be of interest to anyone who is or may become unable to work. Generously sponsored by the National ME/FM Action Network.
Introduction by Dr. Eleanor Stein:
Question & Answer Session with moderator Dr. Stein and panelists James Ludwar, Hugh Scher and John Wodak
May 11, 2016 - Using Neuroplasticity to Cure Chronic Pain
- Neuroplastic Transformation - Presented by Dr. Michael Moskowitz MD, MPH, author of "Neuroplastic Transformation" (featured in "The Brain's Way of Healing" by Dr. Norman Doidge).
Explaining Pain and Neuroplasticity - Presented by Dr. Michelle DeLisle PhD, RPsych. In this talk, Dr. DeLisle reinforced many of Dr. Moskowitz's comments as well as added some further insight into the area of pain management from a Canadian clinic perspective.
May 19, 2015 - Awareness Days for ME/CFS, FM and MCS
- Progress in ME/CFS: Slow and Steady Wins the Race - Presented by Dr. Lucinda Bateman MD, director of the Bateman Horne Center in Salt Lake City for the treatment of ME/CFS and FM.
- Demystifying Popular Diets - Presented by Rory Hornstein, RD, BEd., AFLCA, a Registered Dietitian specializing in nutrition for sports, exercise, weight management (adults and pediatric/adolescent), eating disorders and body image, food intolerances/allergies, immune system enhancement, and digestive disorders.
May 4, 2014 - Awareness Days for ME/CFS, FM and MCS
- The Oral (dental) Connections with FM, ME, CMS, and MCS - Presented by Dr. Craig Young DDS, Biological Dentist in Calgary
- Exercise Testing & Activity Intolerance in ME/CFS - Presented by Staci Stevens, BSM (Sports Medicine) MA (Exercise Physiology) - founder of the Stephens Protocol for identifying Post Exertional Malaise in ME/CFS.
- Fibromyalgia - future research and treatment - Presented by Dr. Jarred Younger PhD director of the Neuroinflammation, Pain and Fatigue Laboratory at the University of Alabama at Birmingham.
Unrest. Available on DVD and on iTunes, Google Play, NetFlix and other streaming sources. A personal documentary by Jennifer Brea about real life experiences with ME/CFS. Excellent film to provide friends, family and others an inside look at the behind the scenes realities of ME/CFS.
What happens when you have a disease that doctors can’t diagnose Jennifer Brea Ted Talk (filmed in June 2016)
Audio Files for Personal Use
The audio files below are in MP3 format. These are not professional grade and are not intended for redistribution.
Rick Hanson HEAL exercise
17:27 This exercise is adapted from one of Rick Hanson's in his book Hardwiring Happiness. This exercise focuses on the Link step of the HEAL process. For some background on Rick Hanson's ideas about how to Install the good I recommend his TedX talk
1:44 This short breathing exercise is taken from Dialectical Behavior Management Skills Training by Dr. Marsha Linehan. To learn more about DBT and Dr. Linehan's work go to her website. The goal of paced breathing is to stimulate the parasympathetic nervous system (relaxation response).
Progressive Muscle Relaxation
16:25 This progressive muscle relaxation exercise also taken from Dialectical Behavior Management Skills Training by Dr. Marsha Linehan. Progressive muscle relaxation focuses attention and relaxes muscles much better than trying “to relax”.
Post Exertional Malaise (PEM) Avoidance toolkit created by the Stanford University research team and input from ME/CFS patients. You will find the toolkit in the General Information for ME/CFS section.
Workwell Foundation has videos, webinars and a timecourse to help identify, understand and prevent Post Exertional Malaise.
M.E. Awareness N.Z. article on PEM
The Spoon Theory: This explanation of limited energy in ME/CFS has caught on around the world. To understand the energy limitations of ME/CFS or explain them to others
See also Self-Management