Dr. Eleanor Stein MD came down with ME/CFS/FM and multiple chemical sensitivities (MCS) in 1989. She’s been exclusively working with patients in Calgary, Canada with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia and Environmental Sensitivities. She’s worked with over 1,000 patients over the past 20 years.
She’s a psychiatrist with a difference – she’s never embraced the psychological interpretation of ME/CFS. Instead, her classes offer the full gamut of biological treatments; plus, she provides advice on coping, stress reduction and self-management.
Eleanor Stein is a Clinical Assistant Professor at the University of Calgary and is a steering committee member of the new Canadian Research Network (ICanCME).
She’s also the founder of the ETeam, “the only multidisciplinary team in Canada offering objective assessment of cognitive, exercise and sensory function in people with ME/CFS, FM, and ES (environmental sensitivities)”.
It’s one of the few places that offers the two-day exercise tests introduced to the ME/CFS field by the Workwell Foundation. The team can assess autonomic functioning, QEEG scans, hearing, eye functioning, cognitive functioning and produce disability reports.
Stein has won several awards including the Florence Nightingale award from the Edmonton ME Society and the John MacLennan Award of the Canadian Society for Environmental Medicine. She was also one of the signatories of the Open letter to the Lancet urging a fully independent review of the PACE trial and An open letter to Psychological Medicine about “recovery” and the PACE trial
She recently improved her ability to exercise and is now able to hike for 5 miles without PEM for the first time in decades. Her chemical sensitivities are no longer an issue, either. Other aspects of ME/CFS/FM, however, continue to dog her.
Dr. Stein’s been leading in-house groups for years but is now going all online in the form of 10 session, 4-month classes called “Pathways to Improvement”. Each class contains up to 30 people and each session lasts 90 minutes.
Why the change? Not only can she reach more people, but she feels that people learn better and achieve more in groups. Plus the participants have an opportunity to safely open up about their experiences. Dr. Stein said that many people start their “emotional journey” to acceptance through their interactions in the group. Learning is enhanced via the different experiences that show up in the group as well.
Online treatment and management is going to be more and more available and I was eager to see what the classes were about. (The recent IACFS/ME conference found another online class quite helpful.) I have not taken the course, but Dr. Stein granted me access to the class materials.
Dr. Stein starts off the original manual from 2013, “Let your light shine through: Strategies for living with ME/CFS, FM and MCS”, with some straight talk – and some bad news.
“Science is making great strides but unfortunately, returning to what life was like before getting ill is not usually possible for people with ME/CFS, FM and MCS. “
That’s the kind of bad news, though, that I, after decades of dealing with ME/CFS/FM and MCS, gravitate towards. Dr. Stein does not promise a cure-all or a complete or even near-complete return to health. That just feels real to me.
Symptom and self-management takes work – but it does work. Take it from Dr. Lapp, another ME/CFS/FM expert who treated patients for decades: “there is no drug that can surpass the impact of thoughtful self-management.”
The good news is that, if you roll up your sleeves and get to work, good things should happen. The more you put into the course, the more you will get out of it. “The more effort you put into self-observation”, Stein writes, “the more you will glean about the connection between your various symptoms and the activities in your life”.
Activities, of course, include everything from when you go to bed, how much activity you do, what types of supplements and drugs you’re taking, what your diet consists of, your thought patterns, etc.
Stein presents a methodical approach to ME/CFS using strategies that many of us probably aspire to, but few may have taken. She asserts the strategies presented “can make a profound and significant difference in your quality of life”. If you do the work – “you will“, she promises, “get ideas for change”. Everyone does.
Through ten online sessions spread out over a four-month period, Stein integrates ways to relieve pain, improve fatigue, support the gut, improve sleep, reduce stress, and others into a symptom management protocol. The protocol uses self-assessment charts to determine what’s what regarding your health. The goal is to replace unhealthy habits, activities, treatments with healthier ones.
Few are probably going be enthused at the habit of “charting”. In fact, Stein says that charting is almost universally disliked before the course but by the end of the course, the participants regard it as “the most important tool for change”.
Charting can bring order out of chaos. With symptoms and energy levels varying by the hour and the day, chaos is no stranger to ME/CFS/FM/MCS patients. With the cognitive hit these diseases bring, figuring out what is causing what can seem near impossible.
I woke up at 3 AM the other night and couldn’t get back to sleep. I didn’t need my Oura ring to tell me I was wiped out, but it was still remarkable to see that the ring cut my allowed activity the next day in half. The next night I went to bed early, slept OK, and was back to my normal activity levels.
I have no idea why I often wake so early in the morning and have these problems. Figuring that out would be a major boon to my health.
It’s not all about charting, though. Charting is the backdrop to the hundreds of pages, videos and links to resources on symptom management and treatments that Stein has gathered over the course of decades of learning about these illnesses.
The Pathways to Improvement Online Course
Short videos introduce each of the eight pathways. Each section also includes texts and recommended resources, and some sections include audible awareness exercises. Stein’s large, downloadable 2013 Manual serves to provide backup information.
Biology of Change – The course begins with an emphasis on a vital component of the course – awareness – and an exercise is introduced to support that. The concepts of neuroplasticity, epigenetics and the microbiome are introduced. Plus, another exercise puts the concept of neuroplasticity into action.
Diagnosis – Diagnostic section provides an overview of ME/CFS/FM/MCS/Electrosensitivity, provides checklists and resources, plus another awareness exercise. (10 downloads).
Sleep – The awareness focus this time is on sleep. Stein walks the group through using a sleep diary and sleep charts. Introduces a sleep app that can be used to chart sleep. Explains cognitive behavioral therapy for insomnia and how it helped her (even though she didn’t believe in it). Introduces calming practices to help with sleep and explores drug and other options. (6 downloads).
Energy – Stein demonstrates how to complete an activity log, identify usable hours per day, understand anaerobic and aerobic exercise, and includes the Stanford PEM avoidance toolkit, the 20 day exercise test, and pacing. (7 downloads).
Pain – How the brain produces persistent pain and how to reverse it. Dr. Stein provides an awareness exercise on pain and explains that most chronic pain is generated by the brain – and can be ameliorated or reversed via neuroplasticity. She first learned about the concept of neuroplasticity and pain after reading Dr. Doidge’s book, “The Brain’s Way of Healing”.
That led her to Dr. Moskowitz’s manual, “Neuroplastic Transformation”. After several of her patients reported decreases in pain using Moskowitz’s approach, she began offering a “Transforming Pain” group. Since then, 60 people have participated, most of whom reported reductions in pain – some with quite significant reductions.
This sets the stage for several possible awareness exercises. The key goal in neuroplasticity and pain is to convince your brain that you are safe. (Moskowitz provides dozens of ways to do this in his book). A 10-minute audio awareness exercise in “The Brain Stops Pain” demonstrates how to rewire your brain to stop pain. (7 downloads).
Diet – proteins, carbs and fats, ketosis and ketogenic diets, intermittent fasting, autoimmune paleo, the right kind of fiber, diet diary and a diet app. (4 downloads).
The Environment – awareness exercise involving environmental (light, noise, sound, odor, etc.) exposures and symptoms, toxic accumulation, diet, sauna and detoxification, three hypotheses regarding environmental illness, electrohypersensitivity (4 downloads).
Emotions – awareness exercise, how emotions are associated with thoughts, physical sensations and actions. Effects of the environment (food, chemicals) on emotions. Fight or flight. Practicing the relaxation response. Fennell’s model of coping with chronic illness, acceptance is not giving up, passing through grief, trauma, epigenetics and health, the difference between depression, anxiety and ME/CFS/FM/MCS. Drugs. Audio exercise – the Seaweed Meditation – being the calm observer of your life… (5 downloads).
“Our inner light is always there even on the “darkest” day. By the end of working through this manual I hope you will be better connected with your own light and that it will be shining brighter for you and those around you.” Eleanor Stein MD
The course also includes the original 2012 Manual called “”Let your light shine through: Strategies for living with ME/CFS, FM and MCS”. The Manual doesn’t include the latest findings, but does provide a wealth of information. Some of the factors covered in the manual:
Laying the Foundation: diagnosis, illness severity, variability, the group dynamic, why self-management is important, goal setting, Karnofsky scale.
Sleep – what normal sleep is, common sleep problems in ME/CFS/FM/MCS, testing, sleep chart, measuring sleep efficiency, sleep hygiene, restrictive sleeping, sleep drugs, natural sleep remedies, and supplements.
Activity and autonomic nervous system (ANS symptoms) – Treating energy like money, how to stop running a daily energy debt, purposeful resting, the dangers of graded exercise, the anaerobic and aerobic energy systems, exercising safely, staying within your energy envelope. daily steps, using a heart rate monitor, activity and functionality charts, diagnosing orthostatic intolerance, blood pressure monitoring, the Rusko test, heart rate variability, treatments.
Diet – diet diary/ dietary issues in ME/CFS/FM/MCS, ideal weight, caloric needs, organic foods, dietary enzymes, diets/ glycemic load/metabolic syndrome/ higher than usual fat/protein diets/ leaky gut/food allergies/ nausea/constipation, etc./ IBS/treatments.
Coping – life events, psychotherapy – limitations and pros and cons, the Fennel 4-phase model, new strategies, blaming, compassion, grief and loss, acceptance and non-acceptance, finding meaning, empowerment, stress management, mindfulness, meditation, visualization, breathing techniques, non-British CBT, finding balance.
Lowering the Toxin load – measuring EMFs, multiple chemical sensitivity (MCS), Dr. William Rea, treatment, avoidance, airborne, water borne, food borne toxins, saunas, cholestyramine, supplements, electromagnetic sensitivity, sources, relief.
Pain – active participation necessary, hyperalgesia, allodynia, neuropathic pain, neuroplasticity, Norman Doidge, pain pathways, neurotransmitters, sleep and pain, central sensitization, windup, the brain, balance, the dangers of avoidance, pushing too far, activity levels and pain, managing fear and anxiety, mindfulness, self-hypnosis, physical therapy, yoga, drugs (NSAIDS, muscle relaxants, centrally acting drugs, cannabinoids, opioids), etc.
Depression and Anxiety – prevalence, biological basis of, disavowal of “functional somatic syndromes”, difference between depression/anxiety and ME/CFS/FM/MCS, prevalence, pain and depression, grief and worry, diagnosing major depression and anxiety, treatment, drugs and supplements.
Common Treatments – tests, general nutritional supplements and nutrient powders, B12, Increasing blood volume, amino acids, magnesium, toxic mold, sauna plus cholestyramine, the Pall protocol.
Dr. Stein is offering a rarity – a chance to cover the basics of ME/CFS/FM and Environmental Sensitivities in an online format with an experienced practitioner. Every practitioner has their unique focus, and Dr. Stein’s approach may not appeal to all, but I find the idea of an affordable, methodical, group-based approach to learning and treating ME/CFS/FM over a 4-month period enticing. The focus on awareness and charting makes sense to me given the multiplicity of symptoms and reactions found in these diseases. The group format which gives often largely isolated patients the opportunity to interact with each other is a bonus.
- Check out some comments from past participants at the bottom of this page as well as some introductory videos.
- Check out when the next course is being offered, below. If you take the course, please let us know how it went for you.
The Pathways to Improvement Course
The next group starts on Tuesday October 13, 2020 to March 2, 2021 at 3:30 PM Mountain / 5:30 PM
$279 CAD (@ $190 US)
- Eight online preparatory lessons, including video, audio and PDF resources.
- Ten live online sessions with Dr. Stein.
- Unlimited access to the recording of each live session.
- A free download of Dr. Stein’s manual, titled “Let Your Light Shine Through”.
- A copy of Chapter 1: Self-Management, from Dr. Stein’s new book, titled “More Light”.
- The presentation slides for each Pathway.
Dr. Chuck Lapp’s endorsement
“For my U.S. friends who may not know Ellie Stein, she is a medical doctor who practices psychiatry in Calgary, Alberta, Canada and has specialized in Chronic Fatigue Syndrome and Fibromyalgia for decades now. More recently she co-authored the excellent Canadian treatment guidelines known as TOP.
Ellie has just released a top-notch online patient-oriented education program entitled “Pathways to Improvement,” which I highly recommend.
There are few programs that guide patients in day-to-day management of their ME/CFS and FM. Ellie Stein takes a fresh and innovative approach that every patient should explore.”
Charles W. Lapp, MD – Hunter-Hopkins Center
Health Rising is not affiliated with (receives no compensation from) Dr. Eleanor Stein or her courses.
Tell us how your coronavirus vaccination went and find out how other people with ME/CFS and/or FM fared with their coronavirus vaccination in Health Rising’s Coronavirus Vaccine Side Effects Poll.