The eighth in Health Rising’s recent recovery story series brings yet another slant on recovery. We’ve had fast recoveries where someone found “the thing” (Melissa’s spinal patch, Rachel and Adam’s vaccines) that quickly turned things around. There was no magic bullet for Patrick, however.
- A Patch On It: Melissa’s Amazing Cerebral Spinal Fluid Leak ME/CFS Recovery Story – cerebral spinal fluid patch
- Adam’s BCG Vaccination Chronic Fatigue Syndrome (ME/CFS) Recovery Story – BCG vaccine
- Can the Japanese Encephalitis Vaccine Reduce Symptoms of Long COVID? – Vaccine
- Lucie’s Surprisingly Simple Chronic Fatigue Syndrome (ME/CFS) Recovery Story – anti-inflammatory and rehydration
- Up from the Ashes: James’s Severe ME/CFS Recovery/Recovering Story – CIRS-based treatment approach
- A Rapamycin Resurgence: An MD Moves the Needle on his ME/CFS – Rapamycin
- Jason’s Eclectic Mix of Treatments Returns Him to Near Normal Health After 16 Years with ME/CFS – alternative medicine treatments
Patrick was not someone anyone would have ever thought would have gotten ill. A successful, supremely fit professional and father, with a wide variety of interests, Patrick seemed to be living the dream – until a pathogen – perhaps a simple everyday pathogen – knocked him out of the workforce and into bed.
Patrick’s recovery was neither simple nor easy, but it didn’t require anything really exotic either. Finding a good practitioner, exerting discipline with pacing, doing brain retraining exercises, and employing an eclectic blend of treatments (supplements, drugs, vagus nerve stimulation, cold water exposure, etc.) – all figured in Patrick’s slow return to health – and ultimately changed his outlook on life. Thanks to Patrick for telling his story on Health Rising (Cort).
In November 2018, I got sick, probably from a virus, and never thought twice about it. I remained very active at work as a senior partner in a small environmental consulting firm, at home with my wife Raty and our three grown-up kids, and in my many physical activities (e.g., martial arts, ocean swimming, sailing, biathlon, Cross-Fit, biking, running).
However, after a few months of unusual health-related peaks and valleys, I woke up one March Monday morning unable to get out of bed for my swimming practice. That’s when everything changed. I soon had to drastically reduce my work hours and spent more and more time completely exhausted and experiencing unexplained body-wide pain, brain fog, gut dysfunction, fever-like chills, light and sound sensitivity, and insomnia. Every time I felt a little better and tried to resume some form of physical or cognitive activity, all my symptoms got worse. To me, this health crisis became known as “Kryptonitis” (i.e., green kryptonite drains Superman of his strength and severely affects his capacity to function).
I was fairly in tune with my body and mind and knew this was abnormal and serious. Having a science background was helpful. I started identifying and tracking my symptoms and consulting “Dr. Google”. Luckily, my family doctor was also very supportive. Through research, I came across the 2015 Institute of Medicine report, “Beyond ME/CFS”, which includes an in-depth review of this illness and also discovered the powerful documentary, “Unrest”, by Jennifer Brea. Everything resonated with my experience.
In the summer of 2019, I conducted a graded exercise therapy experiment that confirmed my suspicions of post-exertional malaise and, with my family doctor, decided that arranging for a formal 2-day cardiopulmonary exercise test (CPET) at the Workwell Foundation in California would provide me with a gold standard confirmation of this hallmark symptom. In November, six months after the beginning of my illness, I received a formal diagnosis of ME/CFS, with the addition of fibromyalgia following a little later.
I spent my first few years moderately to severely affected (e.g., 30-40 functional ability ) and mostly bedbound. With “aggressive” rest, I regained some function (e.g., 50-60% functional ability) but remained mostly housebound. These were very hard times: suffering through symptoms, loss of career and primary source of income, inability to support my family, social isolation, and stigma of living with an invisible disability.
Despite these life-altering challenges, I was blessed with support from Raty, our children, our families, and many close friends. One of these introduced me to “How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers” by Toni Bernhard, a lifesaver, literally. I learned to live with ME/CFS with acceptance and whatever serenity I could muster.
With a few exceptions that I would rather forget about, I consider myself very fortunate with my medical team. They were ME/CFS savvy and, despite a lack of cure or approved treatment, I received a lot of help in navigating through my options. Of course, a lot of this process was also self-directed, albeit at a slow pace, and I researched all I could on the complex but fascinating science of ME/CFS, with Health Rising by Cort Johnson being an invaluable resource. The British Columbia ME/FM Society also served as a fantastic source of information and support (e.g., advocacy, legal issues, government assistance, and caregiver resources).
In early 2022, I began learning about neuroplasticity through a brain retraining program run by Dr. Ric Arseneau, an internist located in Vancouver with expertise in ME/CFS, fibromyalgia, and long Covid. In particular, the program helped me better understand the important role of the autonomic nervous system  in this illness and realize how I could perhaps have a more proactive approach to my own journey toward well-being and, fingers crossed – recovery.
However, it was not until September of that year that I started gaining a lot of traction and momentum in my recovery. My eureka moment was prompted by three separate events:
- Encouraged by a friend, I watched the “Race of the Century” on Netflix which tells the tale of the scrappy group of Australians who in 1983 banded together to dethrone the New York Yacht Club and break the longest-running win streak in history, 132 years, in the most prestigious sailing competition in the world. Being a sailor and understanding that trying to beat ME/CFS is also a classic underdog story, this documentary lit a fire in my heart.
- I attended the 2022 Holistic Health Summit for Long Covid and ME/CFS by Lorrie Rivers and was truly inspired by recovery stories, particularly Raelan Agle’s own experience and the treasure trove of recovery interviews that she hosts on YouTube. I also discovered new tools that made a lot of sense to me in my own pursuit of wellness. Examples include: the concept of “beditation” by Lorrie Rivers, decoding fatigue by Alex Howard, Buteyko breathwork by Patrick McKeown, and transcutaneous stimulation of the vagus nerve by Andrea Parker, David Bastians, and Dawn Wiley.
- Through a series of courses and consultations with specialists at the BC Women’s Hospital Complex Chronic Diseases Program, I managed to find a suite of medication and supplements that appeared to address key pieces of the ME/CFS puzzle in my body (e.g., mitochondrial function, neuroinflammation, pain, and gut dysfunction).
It is now June 2023 and, after diligently following my recovery plan for the past 8 months, I no longer experience any ME/CFS (or fibromyalgia) symptoms. And yes, I have conducted a few self-experiments to find out if I was still experiencing post-exertional malaise and, no, it doesn’t appear to be an issue. I even started introducing movement and exercise (very mild and progressively) into my daily routine with none of the negative payback I used to experience.
Now, what factors contributed the most to my recovery? Was it one thing, a combination, or stroke of luck? Will this be temporary or permanent? Honestly, I am not sure.
What I do know is that I literally threw everything I could at getting better, including the kitchen sink. At this time, I remain careful and self-disciplined in protecting my gains, and I feel safe and at peace, while trusting my own resilience.
If I hypothesize, I would guess that my change in mindset (starting with my eureka moment in September 2022) was the foundation piece. I became determined to heal and diligently implemented my plan, which was greatly inspired by others who also found success in their recovery. Among the many lessons that I learned from “Decode Your Fatigue” by Alex Howard was that different treatments tend to be more or less effective depending on the stage of recovery that we find ourselves in – what we do and when we do it matters to our body. In that context, I think I found the right pieces of the puzzle at the right time, to give my body a chance to get into a healing state.
Brain retraining was one of the tools that truly helped me reduce the impact of stressors in my daily life by pacifying my overactive autonomic nervous system, and this process was probably facilitated by medication, supplements, and other activities like breathwork, somatic practices, cold water exposure, and vagus nerve stimulation. Taken as a whole, this strategy presumably reversed the “metabolic switch” that kept my body in a pathological state. Ultimately, this is all hypothetical, but regardless, I feel very grateful for all my blessings and I am prepared to “wash, rinse, and repeat” my recovery plan, if necessary.
As a friend recently mentioned to me, ME/CFS is a mysterious illness and with some, recovery is traceable to actions and interventions and for others it just seems like a switch got turned back on. For others, the disease can fluctuate or, at times, deteriorate. The duration and severity of the symptoms may also affect people’s outcomes. Research continues and one day, I hope we understand the disease more fully and have repeatable interventions.
Below are some rough notes on my recovery (e.g., context, mindset, what worked, what didn’t, and key resources). I realize it may seem a bit much, but I found that the devil was in the detail and that both determination and self-discipline, applied in a gentle, self-compassionate way, were essential to my gains.
I am sharing this personal story in the hopes that mapping out my experience might help others.
P.S. If I ponder on my current level of activity and what kind of work and exercise I can tolerate, I would say my health is back to its pre-ME/CFS baseline, minus the hyper-fit and overachiever status.
I am determined to learn from this experience. For the time being, I am being careful and continue to rest and apply most actions/interventions that are laid out in my recovery plan. In February, I returned to work about 4 hrs per week and I now maintain what I would consider normal activities of daily life (i.e., normally active at home and outside, with less and less rest required ).
I also continue to expand the frequency, duration, and intensity of physical activities. At present, I am doing the GMB Elements program for 15 min twice per week and also do 5 min of basic strength training every other day. I even plan a solo sailing trip in the coming weeks. All this was unthinkable not so long ago.
Assuming my progress continues, I will start taking the training wheels off (e.g., supplements, medication) and re-assess, but I am in no hurry. In the long term, I am not really sure that I want to return to my pre-ME/CFS lifestyle. I am happy to live a “slow, mindful life” and may explore other passions that are more aligned with my metamorphosed self. Time will tell…
Patrick’s Notes on Recovery
My notes are organized into the following sections:
- Onset of illness and stages of recovery
- What worked and what didn’t
- Key resources (with web links where available).
- Onset of ME/CFS and Stages of Recovery 
- End 2018/early 2019: viral infection (perhaps EBV) during a perfect storm of exceptional professional, personal, and physical stress
- 2019: diagnosis and rapid decline in functional ability
- 2020 to June 2021: Stage 1 (Deep Rest); approx. 30-40% functional ability2; unable to work since June 2020
- July 2021 to August 2022: Stage 2 (Tired and Wired); approx. 50-60% functional ability
- September to December 2022: Stage 3 (Reintegration); approx. 70-80% functional ability
- January 2023 to present: Stage 3 (Reintegration); approx. 80-100% functional ability; return to work part-time and gentle/progressive re-introduction of movement and exercise.
- Context 
- Supportive wife (primary caregiver) and children, families, and close friends
- Supportive and knowledgeable medical team
- Financial stability.
- Acceptance of uncertainty associated with living with ME/CFS and unshakable trust in my own resilience. Determination and discipline to fully restore my health and emerge as a better version of myself!
- Foster creation of a healing state and a sustained joyful schema (i.e., experience daily events as uplifts rather than hassles; Friedberg et al. 2022)
- Daily morning mantra on personal goals and values; always performed in nature
- Completely stopped tracking symptoms and biometrics (e.g., steps, HR, HRV, stress score, body battery) in November 2022, which offered me freedom to live without constantly (and sometimes obsessively, for me) monitoring my health and worrying about negative outcomes.
- Treatments (i.e., to create and maintain a “healing state” in my body).
- Mitochondrial enhancers: breakfast protein powder, ubiquinol, d-ribose, NAC, acetyl-L-carnitine, B-complex, high dose B1, magnesium
- Gut: Metamucil, enteric-coated peppermint oil
- General: Omega-3, D3, vitamin C
- Discontinued: CBD oil, THC oil, amitriptyline, liposomal glutathione, R-lipoic acid, B2, B12, betaine/HCL, hydrogen water tablets, Banyan Stress Ease (Ashwagandha, Shatavari, Brahmi).
- 18-20 hrs per day lying down or lounging, feet up
- Energy envelope for the better part of 4 years: 2,000-3,500 steps, HR < 100 bpm
- Planned rest (“beditation” for a min. 3 hrs/day – lying down device free; “sleep” for a min. of 10 hrs from 9 pm to 7 am)
- Recuperative rest as needed, based on body feedback
- Very limited social interactions, including limited travel to visit family (e.g., aging parents, grandchild) and friends
- Avoid stressful triggers and prioritize myself
- Be aware of my personality traits (achiever, perfectionist, controller, helper) and let go of high energy demands (energy vampires)
- Talk to myself with compassion; mute positive or negative emotions by cultivating calmness and building routine.
Direct vagus nerve stimulation
- Medfit TVNS with Australian tragus clip (daily)
- Beurer ST100 (daily)
- Apollo Neuro (daily).
- BrainChange neuroplasticity scripts  (10-20 times per day); importantly, my scripts included goal setting (i.e., identifying rewards of perseverance that served as joyful reminders, rather than stressful targets, of what my life would be after recovery)
- Thought catching/affect labeling
- Mindfulness meditation (Headspace, Balance, Tara Brach) (daily)
- Somatic tracking (Rebekkah LaDyne) (daily, along with neuroplasticity scripts)
- Yoga Nidra (Ally Boothroyd) (daily)
- Buteyko breathwork (Patrick McKeown) (daily)
- Visualizations (daily; some examples include: Magic Book, The Sanctuary.
- The dreaded “E” word; this was very important during the Reintegration stage of recovery
- Listen to my body before expanding my limits or returning to baseline; increase frequency, then duration, then intensity (per advice from the BC Women’s Hospital Complex Chronic Diseases Program)
- GMB Mobility program
- Simple strength training
- Intermittent fasting (9/15), Mediterranean-style diet, mindful eating, and careful hydration (daily)
- No alcohol, caffeine, or dairy products
- Perrin short technique for lymphatic drainage (daily)
- Cold water exposure (daily)
- Massage (weekly)
- SADD lamp (daily)
- Bouncing (daily)
- Optimize time in nature, sunlight (as I slowly became less sensitive).
- Key Resources
- Agle, Raelan. Host of a YouTube Channel on ME/CFS recovery interviews and advice on various aspects of recovery
- Bernhard, Toni. Author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers
- cfsselfhelp.org. Website with companion book by Dr. Bruce Campbell on pacing, symptom management, and recovery stories
- Friedberg et al. Scientific paper from 2022 on Non-improvements in Chronic Fatigue Syndrome: Relation to Activity Patterns, Uplifts and Hassles, and Autonomic Dysfunction
- Howard, Alex. Author of Decode Your Fatigue, including online companion course and 3-part RESET video series
- Knight, Dakota. Author of A Path to Healing Chronic Illness, self-published in 2021
- LaDyne, Rebekkah. Author of The Mind-Body Stress Reset, Somatic Practices to Reduce Overwhelm and Increase Well-being
- Lyon, Irene. Healing Trauma 3-part video training
- Perrin, Raymond. Author of The Concise Perrin Technique, a Handbook for Patients
- Rivers, Lorrie. Host of the 2022 7-day Holistic Healing Summit on ME/CFS and Long Covid
- Wiley, Dawn. Host of A Vagus Adventure Facebook Group with wealth of information of vagus nerve stimulation.
 Based in Comox on Vancouver Island, British Columbia (BC), Canada.
 ME/CFS is not a psychological illness; it is a disease associated with pathophysiological impacts to numerous body systems (see graph from Renz-Polster et al. 2022). One of these is the autonomic nervous system upon which we can exert some degree of regulatory control (e.g., via structured mindfulness exercises that create new neural pathways through repetition and conditioning).
 When sick, I could only tolerate about 4 hours of upright activity per day (either seated or standing) but now I have no post-exertional malaise with 12+ hours of upright activity.
 Roughly estimated based on the stages of recovery described in Decode Your Fatigue by Alex Howard.
 It would almost be easy to assume that I had a smooth journey and forget the cruel reality of living with moderate/severe ME/CFS: not everyone was supportive, there was a lot of ignorance and dismissal, gaslighting, and I had to drive the medical process most of the time. Also, I tend to be a “glass half full” kind of person and, from a financial perspective, my wife and I were willing to make decisions that reduced financial pressures (e.g., willingness to downsize or move our home, if needed, reduce expenditures to a minimum rather than seek to maintain employment income). Ultimately, I gratefully acknowledge favourable circumstances, but think that our choices, often difficult and requiring self-sacrifice, made a big difference in setting up the right context for my recovery.
 Combination of affirming statements and structured mindfulness exercises that, together, reduce the reactivity of the sympathetic nervous system while engaging the parasympathetic nervous system by creating new neural pathways via repetition and conditioning.
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