Of Interest to Those with ME/CFS, FM, MCS or Chronic Pain
ME/CFS and FM Online Resources:
• 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. cfidsselfhelp.org
• The Fibroguide is a free self-management education portal with helpful resources such as guided breathing and meditation audio files developed by FM specialist Dr. Daniel Clauw at the University of Michigan. fibroguide.med.umich.edu
• Disability Supports in Canada: This is a set of recordings from the 5 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. selfconnection.mykajabi.com/store/rm3tmzDw
• 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. https://drive.google.com/file/d/1kr_OU3IHdBwl2VSgyfYNjJ4W5ltxNGok/view
• The Spoon Theory: This explanation of what it is like to live with limited energy in ME/CFS has caught on around the world. If you want to understand the energy limitations of ME/CFS or explain them to others go to: butyoudontlooksick.com
Mindfulness and Mental Health Online Resources:
• The Breath Project: Developed by Calgary Gastroenterologist, Dr. Phil Blustein, The Breath Project introduces mindfulness meditation. thebreathproject.org
• 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 Centre for Clinical Interventions offers detailed handouts on a host of useful topics such as assertiveness, building self compassion and finding balance. Go to the CCI website for more information.
• Anxiety BC: This website hosts a free course and many resources for adults and children with anxiety. Go to https://www.anxietybc.com/ for access.
• 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. Go to heartmath.com for more information or contact AHS to see if there is a course in your area.
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.
• 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.
• 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.
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:
• 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 at mefmaction.com
• 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 for CIND. Go to actioncind.org and may12th.org
• 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. mesocietyedmonton.org
• 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. solvecfs.org
• Health Rising is a website on which patient advocate, Cort Johnson, and his staff summarize medical research in terms the average person can understand. To stay on top of what is going on the in ME/CFS and FM research go to: healthrising.org
Books: ME/CFS, FM and MCS
• 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
• 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
• See drcolleencarney.com for information regarding books on Cognitive Behavior Thearapy for insomnia (CBTi) by Dr. 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
• Amygdala Retraining: This program also addresses calming the part of the brain that keeps people in fight or flight. The program has been tested at the Mayo Clinic with modestly positive results. guptaprogramme.com
• 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 (filmed in June 2016).Google: the Ted Talk, “
For Health Care Professionals:
• Clinical Practice Guideline on ME/CFS for physicians in Alberta (2016). http://www.topalbertadoctors.org/cpgs/?sid=18&cpg_cats=100&cpg_info=69
• IACFS/ME Primer for Practitioners Developed by the IACFS/ME, the International Scientific Organization for ME/CFS (2014). http://iacfsme.org/ME-CFS-Primer-Education/News/News-Related-Docs/2014/ME-CFS-Primer-for-Clinical-Practitioners-%282014-rev.aspx
Audio Files for Personal Use
The audio files below are in MP3 format. These are not professional grade and are not intended for redistribution.
Paced Breathing: 1:43 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”.
The Brain Stops Pain 7:52 I created this exercise from Annie Hopper’s Dynamic Neural Retraining System and Dr. Michael Moskowitz’ “Neuroplastic Transformation”. It is a visualization to use when one is experiencing pain. To understand more about how using neuroplasticity changes the brain and reduces symptoms go to Dynamic Neural Retraining System or Dr. Moskowitz’s website Neuroplastix.com. Click here to listen to “The Brain Stops Pain”
Body Scan Meditation 15:42 Here is an additional audio file narrated by me from Dr. Marsha Linehan’s DBT Skills Training Manual