I was called to action when I saw a rebuttal in a British Medical Journal that suggested hope for ME/CFS and Long Covid patients was tied to future biomedical treatments only. It suggested certain fields and approaches weren’t welcome — or were just for coping.
I joined forces with a number of people who recovered from ME/CFS and Long Covid, to offer a message of both validation and hope based on pathways that exist today and emerging neuroscience.
Several top treating clinicians signed on to add their support.
Our Rapid Response comment was published by the BMJ here. You can also read it here below (there are some minor tweaks for specificity). There was a 600 word limit.
I’ve also collected short recovery story blurbs below our comment from co-authors about what main things helped them recover.
Hope Rooted in Biology: What Helped Us Recover from ME/CFS and Long Covid:
Dear Editor,
As people who once lived with mild to very severe ME/CFS and Long Covid—and have since recovered or significantly improved—we write in response to the opinion by Miller et al.[1] and the rebuttal by David Putrino, PhD.[2] Our journeys do not represent everyone’s, but we believe it is essential to share a message too often left out: recovery is possible.
ME/CFS is a real physical illness. We experienced disabling post-exertional malaise (PEM), fatigue, brain fog, hypersensitivity to light, sound, chemicals and food, flu-like symptoms, cardiac symptoms, and more.
Research suggests that ME/CFS and Long Covid may involve a breakdown in the body’s ability to return to physiological homeostasis after infection or other stress, pointing to a disruption in the systems responsible for recovery and repair.[3,4] A 2023 NIH study led by Dr. Brian Walitt found abnormal activation in brain regions involved in sensory processing.[5] Other studies show reduced parasympathetic activity and impaired autonomic recovery—patterns also seen in Long Covid.[4–7]
If nervous system dysregulation contributes to this breakdown in recovery, it prompts a hopeful question: how can we help restore the body’s capacity to shift back into a healing state?
Many of us benefited from consistent use of nervous system regulation practices—such as somatic tracking, brain retraining, biofeedback, visualization, and vagus nerve stimulation. These are not mere coping strategies, but rather tools aimed to calm the body’s stress responses and restore parasympathetic tone. Most of us reduced sources of stress, and some worked through trauma. As our nervous systems stabilized, improvements followed in sleep, digestion, and resilience to exertion.
We appreciate Dr. Putrino for acknowledging the harm experienced by patients who were told their physiological condition was perpetuated by unhelpful beliefs and advised to increase activity without regard for post-exertional malaise. These approaches led to setbacks and distress for many. At the same time, the opposite message—that there is no hope without a future biomedical cure—can also be harmful.
The nocebo effect, where negative expectations can exacerbate symptoms or impair recovery, is well documented, and its impact is especially strong when shaped by medical authorities.[8] ME/CFS patients deserve both validation and hope. We need all hands on deck working towards solutions for people today. We ask the medical community to consider the growing body of research on the nervous system’s role in recovery and to listen to those of us who recovered.
Recovery looked different for each of us. A common thread was that nervous system work helped facilitate healing, which is supported by new research. A 2023 Harvard-affiliated pilot study led by Dr. Michael Donnino with guidance from patient advocate Rebecca Tolin found significant improvements in fatigue, function, and pain in Long Covid patients using psychophysiologic education, trigger desensitization, emotional expression, mindfulness-based stress reduction, and somatic tools—by working with biology, not against it.[9]
Some of us also benefited from pacing, improving sleep and nutrition, and in certain cases, reducing environmental stressors.
We met the diagnostic criteria for ME/CFS.[10] We also acknowledge our privileges: most of us had stable housing and at least one supportive relationship. We hold deep empathy for those still suffering, and we call for more ME/CFS and Long Covid research and patient support.
To those in the depths: your symptoms are real. Your pain is valid. While there is no single cure, healing is possible.
Sincerely,
A group of recovered and significantly improved ME/CFS and Long Covid patients and treating clinicians
Recovered/improved authors (in alphabetical order):
(1) Kate Blake, Hertfordshire, England, Recovered from moderate-to-severe ME/CFS after 13 years
(2) Elizabeth Carlson, California, Recovered from moderate ME/CFS
(3) Christine Cooper, Knighton, Wales, Recovered from severe ME/CFS and severe POTS
(4) Richard Forish, Pender Island, British Columbia, 90% recovered from CFS
(5) Sylvia H., London, UK, Significantly improved from moderate-to-severe ME/CFS
(6) Jill Hermon, Michigan, Recovered from moderate-to-severe ME/CFS and POTS
(7) Jake Hollis, PsychD, Brighton, England, Recovered from: ME/CFS, Long Covid, and POTS
(8) Peter Hope, Munich, Recovered from severe ME/CFS
(9) Verena H., PhD in Biochemistry, Canton of Valais, Switzerland, Recovered from Long Covid
(10) Catherine Johns, Melbourne, Australia, Recovered after 43 years of ME/CFS (was once 100% bedbound)
(11) Ebba Karlsson, M.Sc. in Clinical Psychology, Stockholm, Sweden, Recovered from severe ME/CFS
(12) Eleanor Kirby, South Manchester, Recovered from Long Covid
(13) Lisa Ginsburg Lewis, New Hampshire, USA, Recovered from CFS and POTS after 4 decades (including 3 years bedbound)
(14) Kayla Murphy, Pennsylvania, USA, 90% recovered from post-viral CFS with extreme PEM and fibromyalgia
(15) Zsuzsa Pataki, Budapest, Hungary, Significantly improved from severe/bedbound post-vaccination syndrome and ME/CFS
(16) Heather Stewart, Melbourne, Victoria, Australia, Recovered from fluctuating severities of CFS and POTS after 4 decades
(17) Kirsti Tenniswood, East Sussex, UK, Recovered from Long Covid, currently 90% functionality
(18) Lindsay Vine, MPH, Vancouver, BC, Recovered from severe ME/CFS and a severe concussion sustained two years into having ME/CFS
(19) Rachel Whitfield, Bristol, UK, Recovered from Long Covid
Treating clinicians:
(20) Rebecca Kennedy, MD, Family Medicine Physician
(21) Jennifer L. Huggins, PsyD, Clinical Pain Psychologist
(22) Ric Arseneau, MD FRCPC MA(Ed) MBA FACP CGP, Clinical Associate Professor of Medicine at UBC, general internist at St. Paul’s Hospital in Vancouver
(23) Michael M. Dow, PsyD, Licensed Clinical Psychologist
(24) Howard Schubiner, MD, Clinical Professor, Michigan State University College of Human Medicine, Practicing at Cormendi Health
(7) Jake Hollis, PsychD and (11) Ebba Karlsson M.Sc. in Clinical Psychology are also clinicians.
Further thoughts, short recovery stories from authors, citations (click toggles to expand):
I live in Hertfordshire England. I’m 63. I was 48 and a full time teacher when I got ill with ME. My top 3 things for recovery were: -Pacing initially, as I had to learn how to slow down / rest / change gear / connect with my body -Yoga (this didn’t markedly improve my symptoms, but I believe gave me a solid groundwork for the somatic and nervous system practices I learned later.) -Nervous system and somatic practices – Rebecca Tolin’s Be Your Own Medicine course and particularly for me somatic tracking.
No conflict of interest; I’m not a coach or anything.
2. Elizabeth Carlson: Recovered from moderate ME/CFS after 3 years.
I live in California. I’m now 39. I had ME/CFS from age 30 to 33. My baseline was generally about 20% functionality (which I consider moderate), though I had some periods I was in a severe/couch-bound state and some milder periods until my final upward trajectory.
What initially helped was a low glycemic diet, setting healthy boundaries vs trying to push through to please others, and leaving a job that I was barely clinging on to part-time. Sleep hygiene and a calming morning and nightly routine also helped. I also got a boost after I moved 2.5 years in, when an elevated amount of mold byproducts were detected in my body by an integrative clinic and later found by a home inspection.
My baseline improved and my symptoms reduced, but I still did not have much resilience to exertion or stressors. I still experienced debilitating PEM and flu-like crashes / reactivations from minor triggers that left me needing wheel-chair assist to go more than 0.2 miles. And I still clung to my baskets-full of supplements to function.
What helped me fully recover: Committing to a visualization-based brain retraining program for 40 minutes to an hour each day over the course of several months. One minor, but important, part of the program was also avoiding digital content and other things that put me in fight-or-flight during that period. That was my turning point back to full health and resilience. My sleep, wellbeing, and capacity improved relatively quickly from this work though it took months to get my full health and resilience back.
The prior things I did had helped lay the groundwork for healing to happen; but I also went down countless rabbit holes that led to no where or caused setbacks. It wasn’t a spontaneous recovery; I could feel the healing happen and my symptoms decrease / stamina increase as I committed to the neuroplasticity program.
One insight: Before I committed to the program, I had worked with a local NLP coach who helped me identify my emotional triggers. Looking back, while there were usually environmental / exertion triggers involved with every crash, the emotional context was often the biggest piece [example: Proving I was a good person / not lazy]. Understanding this was key. That awareness. After healing physically, I did a self-discovery oriented nervous system regulation program that also taught about how to show up for myself.
Life now: I now have three children under three, where every day is full of both chaos and joy. I have zero chronic symptoms. (Note: While life is very, very busy, I’m not intensely/stressfully burning the candle on both ends, like how I used to live before my health journey. Sometimes I do need to remind myself of the advice I have shared with others.)
Profession: Mom of 3 kids under 3.
Competing interest statement: I run this personal blog about ME/CFS and Long Covid recovery that includes a programs guide with one affiliate link. I donate all proceeds to ME/CFS research—including but not limited to biomedical research charities. The blog is a money losing endeavor; I do it to help others.
3. Christine Cooper Recovered from severe ME/CFS and severe POTS after 5 years (4 years bedbound).
Location: Knighton, Wales Age: 42. Previous diagnoses: severe ME/CFS, severe POTS, CCI (craniocervical instability), histamine intolerance (this last one was not an official diagnosis but something I experienced symptoms of).
Length of time ill: 5 years (from age 35 to 40), of which 4 years were bedbound.
Length of time fully recovered: 2 years (meaning: no or negligible symptoms in the last 2 years)
Christine shared her full story here on the Our Power Is Within podcast.
Profession: I’m a nature-inspired soul coach (not a recovery coach) and forest bathing guide. I help people connect to their soul purpose and connect to nature. I’m also a musician.
No conflict of interest.
4. Richard Forish, Pender Island, British Columbia, 90% recovered from CFS.
Note: I did not get a blurb from Richard, but he stated in an email, “It took me two years, working mostly with CFS Recovery Miguel.”
5. Sylvia H: Age: 43, Location: London, UK. Significantly improved from severe ME/CFS and more.
Conditions/things had: ME/CFS, POTS, MCAS, Chronic Lyme, Interstitial Cystitis.
Severity at worst: Severe (bedbound for 20+ hrs a day). Length of illness before significant improvements made through mind-body techniques: 6 years.
What helped: Brain retraining, somatics, TMS work, trauma healing. For me, doing this work was more than healing; it was learning how to befriend and trust my body and for my body to trust me. I have a deep sense of self-attunement now and this is what helps me regulate and resource my nervous system.
Life now: Other than working part time (instead of full time) I live a full life in all aspects with no restrictions. I do not take any medications. I still think I am continuing to improve, though in very small increments.
Profession: Chartered Accountant (this is the same as a CPA in the US).
No conflict of interest.
6. Jill Hermon. Recovered from moderate-to-severe ME/CFS and POTS after 4.5 years.
Current location: Michigan. Age: 46 years old.
I began experiencing surges of symptoms shortly after my 41st birthday and fully crashed a few months later. I was initially diagnosed with ME/CFS and later also with POTS. Severe symptoms kept me bedbound for most of 2020 and housebound for most of 2021.
I credit the early improvement to listening to my body’s deep need for rest and isolating myself from as much outside stress as possible.
My real recovery began in late 2021 when I joined the CFS Health program by Toby Morrison (key factors: mindset, structure, and community). During this timeframe, I also practiced lots of yoga nidra, breathwork, and meditation; and explored a few forms of energy healing.
As my capacity increased, I began to re-engage with the world outside my home. (In the spring of 2022, I met my second husband; we were married that fall.) By this time, I was no longer housebound, but I was spending an unsustainable number of hours each day on recovery practices instead of simply living life. For example, in April 2022, I was spending 5+ hrs per day on recovery practices just so I could spend 2-3 hrs on what I really wanted to be doing: normal life stuff.
In 2023, I moved myself and my teenage son to South Korea to join my husband. While there, I completed Irene Lyon’s SmartBodySmartMind program, getting my first taste of somatic healing. I then worked with a mindfulness therapist in one-on-one sessions for a few months and completed an 8-wk Mindfulness Based Stress Reduction (MBSR) group course. And in late 2024, I enrolled in Gemma Hanley’s Reveal & Rise program.
All of this—somatic practices, inner child healing, releasing past trauma and trapped emotions—was stuff I’d needed to first create capacity for through my earlier recovery work.
Reflections: I’m honestly not sure how one defines “fully recovered.” I haven’t thought of myself as someone with ME/CFS for many months, but I suspect if I ever returned to the life I was living before diagnosis, I could relapse. The key is that I have no desire to return to that lifestyle. I am so much more connected to my mind and body now, and I’m living very differently.
So, if forced to name the top 3 things that helped me heal, I’d say: 1. believing that healing is possible 2. an emphasis on nervous system regulation 3. a broad, holistic approach.
No conflict of interest.
7. Jake Hollis Recovered from: ME/CFS, Long Covid and POTS. Age now: 35.
Length of time ill/recovering: 5 years. Severity: Mild-to-moderate with periods of moderate-to-severe/housebound; not a linear journey.
Top 3 things that helped: 1) a coherent psychoneuroimmunological understanding that my body was dysregulated, not broken, 2) somatic tracking/brain retraining, 3) becoming aware of and expressing suppressed emotions.
Competing interest statement: Dr. Jake Hollis is a Clinical Psychologist who works with people living with ME/CFS and Long Covid, which he recovered from himself.
Liz note: I followed up with Jake and learned more about his story. Jake did Rebecca Tolin’s Be Your Own Medicine live cohort program (a somatic/brain retraining program). He also found Nicole Sach’s Journal Speak journaling method to process emotions very helpful. He also had a psychodynamic therapist who helped him understand why he lived life in the way he did (as a very high achiever, extreme helper, etc.)
8. Peter Hope: Location: Based near Munich. Length of health journey: 5 years severe. Have stayed fully recovered, but living a health focused life to stay that way.
Things had/healed from: Severe ME (with PEM obviously), POTS, MCAS.
Top things that helped me heal: Learning to regulate my internal state to induce healing. Plus doing 100 tiny things that each made me 1% better.
Life now: Now I can do all the things I love, including skiing, hiking, playing with my kids, travelling, bike riding, studying, working. Without fear of a crash.
Competing interest statement: Peter Hope healed from severe ME/CFS and offers professional health coaching services for people with ME/CFS through a multi-pronged approach informed by his own recovery experience.
9. Verena H. Recovered from Long Covid after 1.5 years.
Location: Canton of Valais, Switzerland Age: 34. Length of time: 1.5 years. Recovered from Long Covid.
Former severity: I could not leave the flat most of the time and was sitting or lying down most of the day/sleeping a lot. Though I did survive on my own with an energy saving plan, the life change was severe because I had been a very active athlete before the illness. I was second in a mountain half marathon just 2 weeks before I could barely get up the stairs.
Things that helped: 1) Hundreds of recovery stories, 2) the ANS Rewire and Gupta Programs, 3) Being on my own for almost all of the Long Covid 1.5 years. It forced me to dig deep and find a way to manage myself with whatever came up. It was very hard. Sometimes almost unbearable but I knew the solution was within me, not in others.
Note: When I tried getting back to mountain running after recovering, I got a femoral neck stress fracture from deconditioning. It took another year to recover from that.
Life now: Now I am an active athlete again which means a lot to me. It is part of who I am and what makes me feel alive. I am working full time, meeting friends, exploring new hobbies, thinking about moving back to the city and about what I want in life. It still doesn’t feel like I am fully there even though I am physically healthy. Still digesting everything that happened. It changed me.
Profession: Associate Principal Scientist, Pharma. PhD in Biochemistry.
No conflict of interest.
10. My name is Catherine Marie Johns, and I live in Melbourne, Victoria, Australia. I’m 75 years old. I had ME/CFS for 43 years. I experienced every stage, at my worst 100% severity, bed bound and unable to function. This had a devastating effect not only on me but my family, especially my daughters who were 8, 10 and 12 when I became ill, with a sudden onset after a prolonged period of chromic stress. I have a background of complex trauma from childhood. When I became ill, I was a high school teacher of English and French, and I have since published short stories, and a novel in 2023.
I had all the classic symptoms, e.g.fatigue (PEM), gut dysfunction (dysbiosis), extreme sensitivity to light and sound and stimulation of all kinds, cognitive impairment, flu-like symptoms, insomnia, tinnitus, and so on. It took about two and a half years to recover. I mainly used Dan Neuffer’s ANS Rewire program, a holistic approach based on the fact that ME/CFS is a dysfunction of the autonomic nervous system, and using brain retraining and other psychological and physical strategies to restore balance, or homeostasis, to the central nervous system. It was a process of transformation as well as healing. When I started the program my symptoms were more than moderately severe.
I also picked up a lot of tips about healing –and inspiration and hope – from others in the community e.g. Liz at Heal with Liz, Miguel Bautista – too many to mention, but mainly Raelan Agle’s recovery interviews.
No conflict of interest.
Watch Catherine’s recovery story interview here on Raelan Agle’s channel:
11. Ebba Karlsson Location: Stockholm, Sweden. Recovered from severe ME/CFS. Profession: Clinician psychologist and university lecturer. Formerly taught political psychology; teaching an upcoming university course on psychoneuroimmunology, which was a key part of her own health recovery.
12. Eleanor Kirby. Location: South Manchester. Age: 44. Healed from Long Covid. Length of time ill/recovering: 1 year. Onset March 2020.
Symptoms: Nothing I’ve ever experienced before. Couldn’t stand to brush teeth even, couldn’t stay awake for more than 3 hours at a time, fizzing (don’t know how to describe it) in my whole body, tinnitus, most of all the overwhelming urge to stay still. I wanted to scream and cry and curl into a ball if I even moved my hand. (It felt like a freeze response of an animal in the headlights).
Recovery: I did the Lightning Process in October 2020. Felt better quickly, for the basics of standing and walking. Back at work in secondary school in two months. Fully recovered in 6 months (~ by March 2021).
Top 3 things that helped 1. Lightning Process (as a physicist I was so skeptical, but I saw a small amount of research in the BMJ so gave it a try) 2. Thinking about what I would do when I recovered. I was stuck for a long time scared about the future. When I did a jigsaw picture of all the parts of my life, and how I could sort each out it really helped. 3. Having a project to distract my overactive brain. I wrote a poem and turned it into a book for my little nephew.
No conflict of interest.
13. Lisa Ginsburg Lewis. Recovered from fluctuating severity of CFS and POTS after 4 decades (including 3 years bed-bound). Location: New Hampshire, USA.
Onset and an initial recovery: I now understand that my CFS started at 25, with 7 years of chronic dizziness. It started to affect me again when I became a mom and kicked in very strongly with my second pregnancy. I was constantly sick and extremely fatigued for another 6 years, and slowly recovered my health, if not all my energy, with acupuncture.
Setbacks: Marital stress brought on what I now know was mild POTS and increasing fatigue. In 2021, after 34 years pushing my way through, the dizziness knocked me down again. PT helped enormously, and just when I thought I’d start to work, CFS and POTS hit me full on, and I instead took to my bed for ~3 years, about 95% of my time horizontal. I had read nothing helpful in all those years, and googling still didn’t help.
The turning point for upward trajectory: A miracle of networking led me to Restorative Yoga (Gentle Yoga with Charlotte) and the Optimum Health Clinic. Nervous system regulation was definitely the recovery answer for me.
I followed that with some enormously helpful coaching (Trust and Bloom) and finally, joined the Heal program (by Jennifer Mann and Kardin Rabin) in a desperate attempt to find more support. Raelan Agle’s interviews, and daily videos from Jennifer Mann and Kardin Rabin were what kept me on my path.
Life now: I still yearn for more connection in this healing/recovery community for ongoing support, but I know I have the tools I need. I think everyone can benefit from doing the work of toning your nervous system, even if it’s only part of your solution! Best wishes to you all.
I have no conflict of interest in supporting this rebuttal.
14. Kayla Murphy. Age: 29. 90% recovered from CFS and fibromyalgia.
Length of illness/recovery: 3 years. I was diagnosed with post-viral chronic fatigue and fibromyalgia from a mono infection.
My main symptoms were extreme PEM (I couldn’t even scroll on Instagram or shower myself), limb weakness, and muscle pain/burning.
Top 3 tools I used to recover were: Journal Speak with Nicole Sachs, the Curable App, and CFS School (and your podcast hehe).
Note: The CFS School program was updated and is now called ‘Heal’ by Jennifer Mann and Kardin Rabin of Somia.
15. Zsuzsa Pataki. Location: Budapest, Hungary. No conflict of interest. Significantly improved from severe/bed-bound post-vaccination syndrome and ME/CFS. She can now drive, shop, ride an electric bike, organise birthday parties, and more. She used mind-body methods to improve. She writes:
Information about me:
– I’m 39 years old.
– The timeline of illness: Perfect storm in 11.2021. Bedbound 04.2022. – 07.2023. housebound 08.2023 – 06.2024 I started to drive my car and move more and more: 06.2024 – still in progress 🙂
– Conditions I had: Post vaccination syndrome, and almost every ME/CFS symptoms: lymph node swelling chest pain with pain radiating to the left arm tachycardia sever POTS vertigo gastritis and other digestive issues, insomnia, painful spastic muscle tension, burning sensation on the skin, muscle twitches, extremely low capacity & PEM, sensory hypersensitivity, hypersensitivity reaction to certain substances, reduced attention/concentration time (e.g. even a short email was extra tiring to write), migraines, extreme night sweats, I’m sure I had other symptoms, but fortunately I can’t remember them.
– Severity at worst: Bedbound, I could only reach the bathroom, which was 4 meters away. My parents took care of me, I ate in bed, brushed my teeth in bed, I could wash myself in the bathtub about once a week. My helpers (godmother / mom / husband) washed my hair, it was too tiring for me.
– 3 main things or so that helped:
1) Support and Validation In addition to my supportive and accepting husband and family, my friends were also extra kind! Unbeknownst to me, they raised money for me for a very expensive medication that seemed promising at the time. This was real suicide prevention. I was incredibly embarrassed, touched, and felt like I simply couldn’t give up!
2) Recovering friends. My fellow patients I met on the road to recovery. We met mostly in negative Fb groups, which we left over time and became our own little circle of recovering friends.
3) Hope, knowledge and examples to follow I really needed hope, but one that was well-founded. One that I could believe in. Trends based on the concept of mind-body or psychoneuroimmunology ultimately provided knowledge, credibility, and hope.
+1) arriving at the team where it’s finally good to belong. Severe ME/CFS also brought self-blame and low self-esteem. From this state, it was wonderful to meet a group of people who are good to belong to. Those who have already walked this hellish path, reframed it and even developed from it. Those with whom my personality is so similar, despite living on another continent. Transferring from the hopeless team to a strong, resilient, magical team was transformational for me.
– One insight to share: Instead of relying on the advice of others and making decisions driven by fear, I shifted to a state of self-confidence and intuition – ahh, that was a big step for me!
– Life now: I love my life again. I can sleep and eat delicious food. I spend a lot of time in nature. I have the energy to do housework, read, watch movies, and work from home part-time. I started to do yoga, exercise, and walk carefully. I really enjoy riding an electric bike! I now organize birthday parties for my friends who helped me so much – I enjoy them so much.
This year, for the first time, I picked strawberries in the open field again and made strawberry jam. And my husband and I are just starting to renovate our apartment.
No conflict of interest.
Note: Susie sent in the most inspiring before (bedbound/hospitalized) and beautiful life now photos.
16. Heather Stewart: Australia. Age 60. Recovered from mild-to-moderate CFS and POTS after 35+ years. Currently works two demanding jobs with ease.
I first got glandular fever at 17 in 1981, and I then had long period of fatigue for the next four decades. I did improve well enough to attend university for four years, but when I started work I kept getting unwell for the next two decades with a repeated pattern of fatigue, congestion, aches, and sore throat.
I was first diagnosed with CFS formally in 1986 at age 22. My health declined further with pregnancy when I was 35, and I was anxious and exhausted when my children were young.
When I went through perimenopause at 44 I got worse, I had negative anticipatory thoughts about health issues all the time. My sleep was not good, I had brain fog, POTS, and post-exertional malaise (PEM).
At 52, I got worse again as work got more stressful, and I had to stop working. I was referred to the specialist chronic fatigue clinic, but their medical response made me worse.
I started the Gupta Program in 2017 and started doing brain retraining, noticing thoughts, and then coming back to a vision of calm body. I also did journalling, and their neurosomatic retraining to practice to get my system out of overwhelm. I started to progress immediately. My brain fog started to lift.
I listened to Irene Lyon and added some of her somatic practices like orientating. I added EFT, havening, Yin yoga poses, QiGong, and I found I was not crashing all the time. I did lots of meditations and relaxation and discovered the importance of deep rest.
I then continued to improve with my fitness, and my POTS disappeared. I managed to recover over a period of about six months to the point I could walk three kilometres with ease, I could sleep at night, I could focus and I had minimal pain. I added hypnosis, to switch off fear about getting sick.
I kept improving the more I learnt. I did ANS Rewire and listened to Alex Howard and used Curable. I did a meditation retreat. My naturopath continued to help me eat better and added supplements. The biggest single change was that information and practices from these program helped me learn how to get my nervous system back into the green zone regularly. This allowed me to absorb nutrients and to sleep better.
Guided meditations and somatic tracking were most helpful in this early stage. I worked on not being fearful of relapses, I learnt to go with the flow of it all. I dropped expectations I could be perfect. I practiced self compassion. I might do 8 mini sessions of meditations or body scan relaxations across the day. I meditated before dinner, before bed. Over time I did not need to rest as much. I listened to Deb Dana and used her ideas understand what state my nervous system was in so I could attend to and befriend what arose.
I now can swim 1.2 kilometres, which I often do in the ocean even in the cold. My posture has improved dramatically, I no longer live in collapse mode. I have no POTs. I am managing with ease two demanding jobs; I have no problems sleeping. I have put on muscle and lost visceral fat. I am rarely anxious. I am 61 next month, and have considered myself recovered for at least five years.
Key insight: Understanding the role your nervous system plays and learning to tune in with interest and not fear is the game changer. It allows you to attend to what arises, and keeps me in my window of tolerance, a window which continues to grow the more I learn and improve.
No conflict of interest.
17. Kirsti Tenniswood, East Sussex, UK, Recovered from Long Covid, currently 90% functionality with no more symptoms.
No conflict of interest.
18. Lindsay Vine. Location: Vancouver, Recovered from severe ME/CFS and a severe concussion 2 years into her journey.
Length of illness/recovery: It took about five years of intense ME/CFS suffering before I started finding the tools I needed to heal, and about another two years of working up to living a full life again.
Severity and symptoms: At my worst, I was mostly bedbound, peeing in a Tupperware container and eating from tuna cans stacked up beside my bed. On top of extreme fatigue, I suffered from severe brain fog, gut issues like chronic candida, SIBO and mouth sores from eating many foods. I had severe PEM, sensitivity to light, noise and movement, as well as flu like symptoms and recurring sinus infections.
Turning points: The turning point came when I started asking for help from friends, family and those who had recovered. My friends helped me move back to Vancouver where I had more support, I asked my step dad to finance me in taking the CFS Health program, where I made amazing friends and I started to understand what the healing journey could look like with the right tools.
For me, the mental shifts were also a huge part in healing. While ME/CFS is a physical illness, the hormones released when in a better mental state can make a huge difference in our ability to heal. I stopped worrying endlessly about what I “should” be doing, and started to value myself for who I am as a person. This took a lot of pressure off my nervous system.
I gained confidence and a feeling of empowerment by focusing on what I can control in my life and what things are going well (rather than what isn’t). Additionally, I learned to release my deeply held feelings of guilt (about everything) and a ton of repressed anger I didn’t even know I held onto.
Sense of purpose: Another thing that helped me while recovering, was creating and hosting ‘Post Viral Podcast’ with my friend Stuart (who has also recovered now). This project gave me a sense of purpose and lead me to a career path I’m passionate about.
Life now: I am now an ME/CFS Coach and I structure my lessons around the four mind-body areas that helped me regain my life (Lifestyle / pacing, mindset, somatics, and self discovery work). I’m proud to be one of the first instructors teaching mind-body work within the Canadian Health Care system (free for Canadians) here in British Columbia. On top of working in a field I love, I am so grateful to be able to participate in all the physical activities I love again, like biking, hiking, softball, comedy shows, etc.
If you are feeling stuck remember there are always options to try and things can change for the better.
Competing interest: Lindsay Vine, after recovering from severe ME/CFS is a CFS recovery coach and programs navigator. Watch her story here.
19. Rachel Whitfield, a biochemist turned leadership trainer, fully recovered from Long Covid after falling ill during the pandemic.
Severity/length of illness: Onset December 2020. Mostly bed-bound by February 2021. Majorly improved by summer 2021 and has continued to thrive; she has since run marathons. Rachel writes:
I started to notice certain patterns. I would crash just before a work piece.. I felt better when I cancelled work. If I thought I had overdone it, I would crash, usually 24 hours later. As all tests had came back “normal,” I started to wonder whether my brain had more involvement in my recovery than I had previously thought. I discovered a brain retraining programme which helped me realise that my nervous system was in fight or flight.
This helped me to realise that it was software (my brain), not hardware (my body) that was running the show, and that it probably wasn’t permanent. I also realised that this had to be neuroplastic, as I had so many different symptoms that moved.
I made a decision that I was going to get better, and when I did I was going to share my story to help others. I started to look for ways to find calm – meditation, relaxation exercises, finding joy in the small things, looking at my response to stress. I started to look for upwards trends which was key.
I realised that it wasn’t a coincidence that I crashed before a work piece – my anxiety about being well for work was literally causing me to crash.
Life now: Rachel now shares her recovery story on podcasts, in the media, and on her personal blog to inspire others on their recovery journey. She is a mum and endurance athlete, and since recovering, has completed ultra marathons and triathlons. Her latest challenge is running the southwest coast path (630 miles from Minehead to Poole), having been inspired by the book The Salt Path when she was ill. Watch her recovery story here on Harry Boby’s Long Covid channel.
Competing interest: Rachel is an (unpaid) volunteer for COFFI (collaboration for fatigue following infections)’s consumer advisory group of which co-authors of the original BMJ post are members.
There was another lovely person who wanted to share her blurb, but responded right after I submitted our rebuttal to the BMJ.
20. Full name: J. Bethke. Location: Hanover, Germany. 85-90% recovered from ME/CFS (a range of severities over 25 years).
Age: 44
Severity: Very mild ME/CFS since 1998, more moderate 2014, more severe 2024 post-viral, including bedridden/housebound times.
Main symptoms: Fatigue, PEM, heart palpations, IBS, headaches (& many more).
This helped me: TRE, daily videos (Dan Buglio), reading/listening to success stories (recovery is possible, planting this in my mind), very gradually expanding activity (steady and slow wins the race), setting boundaries, asking myself: what do I really-really want? etc.
Life now: I am back to work, I would say I am recovered 85-90%.
There is no conflict of interest.
Note: J. asked me to keep her first name private for the blog post. She shares a message of hope.
Would you like to share hope and include your story? Complete this survey.
Further thoughts beyond the 600-word BMJ comment submission limit. This section does not necessarily reflect the views of all co-authors. It includes input from recovered individuals who did not publicly sign.
There was discussion amongst the authors on how to better build bridges with the biomedical community, while also acknowledging the reality on what helped us heal.
Emerging neuroscience can build bridges:
Many co-authors, particularly those from scientific background including a physics teacher, a pharmaceutical scientist, two psychologists, and a biochemist wanted to further explain how nervous system regulation helped our physiology and build bridges with the biomedical movement.
Dr. Jake Hollis, PsychD—a UK-based clinician, recovered ME/CFS and Long Covid patient, and co-author of our BMJ response—writes:
“Our focus on nervous system regulation aligns with the multisystem abnormalities Dr. Putrino cites—including immune, metabolic, and cardiovascular dysfunction.
Insights from the field of psychoneuroimmunology show that the brain and wider nervous system are embedded in dynamic, bidirectional homeostatic networks throughout the body.
It is therefore plausible that regulating the nervous system can promote improved function across multiple physiological domains.”
Co-author Zsuzsa Pataki from Hungary, who comes from a scientific background, believes psychoneuroimmunology is a good starting point for those who were once skeptical, as she once was. This field may help bridge the gap between the biomedical and mind-body groups.
Another person who recovered—but chose not to publicly sign—emphasized:
“The physiological basis of ME/CFS and Long Covid does not preclude healing through brain and nervous system-based pathways.
Recovery in the absence of a biomedical cure does not make these conditions less real.
The idea that mind-body and biomedical research are in conflict is a false dichotomy. Both are essential to understanding and treating complex conditions like ME/CFS and Long Covid.”
We also wanted to acknowledge harm by biomedical-only rhetoric:
The biomedical movement has done an excellent job validating ME/CFS patients who have a history of their condition being completely dismissed. It has also generated interest from leading researchers, which is exciting.
Unfortunately, the biomedical movement has been helmed by leaders who have turned it into a “biomedical-only” and “no hope without a biomedical cure”* movement. *The actual slogan of a top ME/CFS charity.
A concurrent top priority should be providing patients with options and information to improve their lives now.
Biomedical-only leaders with large platforms and most existing ME/CFS charities spread outdated, dooming recovery statistics collected by charity support groups (where people who significantly improve or recover do not often congregate) from many years ago.
These messages may provide validation that people are not alone, but they also can compound suffering. Many clinicians around the world regurgitate grim prognosis to their patients; the combination of suffering from debilitating symptoms and hopelessness for a better near-term future has caused much despair.
Yet there are pathways to recovery; and they should not be dismissed or ignored. One co-author who was previously bed-bound shared:
“The biomedical ME/CFS movement first took away all my hope and convinced me the mind-body concept was dangerous. Overcoming that fear was the hardest part.”
Ultimately, nervous system regulation methods has helped her get her life back.
Many co-authors report they were unaware of nervous system regulation methods for years (including brain retraining and mind-body tools)—or were skeptical to try them. Some of us tried them initially, but didn’t fully commit until we explored many other routes. Others had to adapt our approach or find the right combination of tools. Many of us wish we had started this work sooner.
There are likely millions of people living with ME/CFS and Long Covid who are unaware of this recovery pathway or who have been told by medical authorities that nothing will help them and all they can best do is manage symptoms.
Currently, the NICE guidelines in the UK provide zero options for improvement or recovery for these conditions beyond symptom management. Official guidelines are not much different in other countries. We are also aware that many patients are dismissed (many of us were). People deserve validation and pathways to improvement and recovery.
Nervous system regulation and mind-body healing must not be minimized as coping strategies as Putrino et al. describes. They certainly should not be referred to as pseudoscience or “brain games” (which a co-author of Putrino’s rebuttal has publicly described them as). These approaches are helping many people recover from physiological symptoms—and deserve to be studied accordingly.
There are well over 200 ME/CFS and Long Covid recovery interviews on Raelan Agle’s YouTube channel alone. The vast majority describe nervous system regulation as their turning point. Many of these individuals had been ill for years—or decades.
Now that this knowledge is out there, more people are recovering. The list to share your story on Raelan’s channel is many months long. (Raelan Agle herself recovered from CFS after a decade; she works a full-time job outside of the recovery space and works long hours to get the stories out.)
Noble endeavors towards a biomedical cure need not depend on minimizing recovery pathways that do not involve drugs or surgeries.
Multiple co-authors of our BMJ rapid response comment, including a PhD biochemist who recovered through nervous system work, genuinely questioned whether a singular biomedical cure will ever emerge—even with substantial funding.
Of course, a safe, curative drug would be welcome. But ME/CFS and Long Covid affect multiple systems. Pharmaceuticals targeting single molecular pathways may help manage symptoms; we wonder if they can replicate the systemic benefits seen with nervous system regulation.
Our nervous systems need to be adaptable. Long-term drugs or surgeries that bluntly up or down-regulate sympathetic or parasympathetic function may not offer lasting solutions. Some drugs that modulate the nervous system may help—but others, like benzodiazepines, have caused major reported setbacks for patients when used long-term (even as short as 2-3 week long daily prescriptions) or stopped abruptly. (Benzodiazepines may be helpful in acute, monitored, singular clinicial settings. Nothing is medical advice.)
Some ME/CFS, Long Covid, POTS, and fibromyalgia patients are resorting to spinal and nerve-blocking surgeries, including the Stellate Ganglion Nerve Block, which blunts the sympathetic nerves in the back of the neck. Some patients have experienced very positive results from these treatments, which is a further clue of the nervous system’s integral role. However, not all patients are getting lasting relief and some have had negative results. Just today, a stranger shared this on YouTube:
Many biomedical efforts focus on pathogen elimination, based on hypotheses of persistent or reactivated infections. Several of us had such infections diagnosed—yet found our greatest lasting improvements through nervous system regulation.
A recent sizable antiviral trial for Long Covid (for people who had symptoms longer than 3 months) showed no benefit. More research into pathogen-eliminating and immune-modulating strategies, however, is certainly warranted. There are likely a variety of phenotypes among the patient population, i.e., involving different pathogens or those with up or down-regulated immune responses.
While this is being explored, we also call for research into the approaches already helping the most people recover today.
People deserve access to the full range of evidence-informed strategies that may support improvement and recovery. We urge researchers, clinicians, and patients to include nervous system regulation in a broader conversation on recovery.
We need all fields working together to help people now—not division.
Nervous system regulation refers to a range of practices that help shift the body out of chronic threat states—such as fight, flight, freeze, or collapse—and into a state of safety and repair.
This is not the same as graded exercise therapy (GET), which has a well-documented history of controversy. While some of us gradually reintroduced movement or exposure during recovery, this wasn’t about pushing through. It was about learning to regulate our nervous systems to safely expand capacity.
Importantly, not all nervous system-based interventions fall under cognitive behavioral therapy (CBT), not all CBT is the same, and not all practitioners are the same or fully grasp the intricacies of Long Covid and ME/CFS. Grouping all of this work together in simplistic ways—as some biomedical movement leaders do—overlooks key distinctions and can be misleading.
There is a wide spectrum of approaches—such as brain retraining, somatic therapies, and psychophysiologic techniques—that go beyond traditional CBT models. Some target thought patterns; others emphasize bottom-up regulation of the autonomic nervous system; some integrate both.
Brain retraining is a top-down (mind-to-body) nervous system regulation practice that often includes an educational component. Also known as limbic system retraining, amygdala and insula retraining, neural retraining, or psychophysiologic retraining, it is taught in various ways to cultivate a sense of safety, wellbeing, and/or thriving. Some programs use visualizations (many do not).
Some methods focus on emotional responses to symptoms; others frame the issue as limbic system impairment or sympathetic overactivation. People respond to different frameworks, and many of us found value in combining approaches.
Body-to-brain (or bottom-up) practices include somatic tracking, biofeedback, breath work, polyvagal techniques, and more.
There are also tools like expressive writing, journaling, inner child work, self-compassion practices, meditation, Emotional Freedom Technique (EFT), and Eye Movement Desensitization and Reprocessing (EMDR).
While recovery using nervous system regulation can involve setbacks—especially if diving in too quickly while still in a state of overwhelm—these approaches themselves do not cause injury. Many of us experienced life-changing improvements. In fact, nervous system regulation is central to most of the recovery stories now being publicly shared.
As previously noted, the nervous system is bidirectional: it both affects and is affected by external factors such as infections, environmental exposures, and other physiological challenges. But focusing solely on these external drivers, without also addressing the nervous system, often produced limited or even negative results. (Some couldn’t tolerate/integrate supplements or other treatments until our nervous systems were in a better state.)
Beyond formal programs, indirect factors also played a powerful role in helping to regulate our systems: communicating boundaries, getting morning sunlight and spending time in nature (when possible), reducing exposure to digital content that triggers fight-or-flight responses, gentle yoga (when tolerated), and reconnecting with what brings joy.
None of this is medical advice.
References:
1. Miller A, et al. Patients with severe ME/CFS need hope and expert multidisciplinary care. BMJ. 2025;389:r977. https://doi.org/10.1136/bmj.r977
2. Putrino D. Rapid Response: Patients with severe ME/CFS need hope in the form of evidence-based interventions, not opinions. BMJ. 2025;389:r977/rr-16.
3. Komaroff AL, Lipkin WI. Insights from myalgic encephalomyelitis/chronic fatigue syndrome may help unravel the pathogenesis of postacute COVID-19 syndrome. Trends Mol Med. 2021 Sep;27(9):895-906 http://doi.org/10.1016/j.molmed.2021.06.002
4. J.L. Newton, O. Okonkwo, K. Sutcliffe, A. Seth, J. Shin, D.E.J. Jones, Symptoms of autonomic dysfunction in chronic fatigue syndrome, QJM: An International Journal of Medicine, Volume 100, Issue 8, August 2007, Pages 519–526, https://doi.org/10.1093/qjmed/hcm057
5. Walitt, B., Singh, K., LaMunion, S.R. et al. Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome. Nat Commun 15, 907 (2024). https://doi.org/10.1038/s41467-024-45107-3
6. Escorihuela, R.M., Capdevila, L., Castro, J.R. et al. Reduced heart rate variability predicts fatigue severity in individuals with chronic fatigue syndrome/myalgic encephalomyelitis. J Transl Med 18, 4 (2020). https://doi.org/10.1186/s12967-019-02184-
7. Yong, S. J. (2021). Long COVID or post-COVID-19 syndrome: putative pathophysiology, risk factors, and treatments. Infectious Diseases, 53(10), 737–754. https://doi.org/10.1080/23744235.2021.1924397
8. Häuser W, Hansen E, Enck P. Nocebo phenomena in medicine: their relevance in everyday clinical practice. Dtsch Arztebl Int. 2012;109(26):459–465. https://doi.org/10.3238/arztebl.2012.0459
9. Donnino M, et al. Psychophysiologic Symptom Relief Therapy for Post‑Acute Sequelae of COVID‑19: A Pilot Randomized Controlled Trial. Mayo Clin Proc Innov Qual Outcomes. 2023 May 19. https://doi.org/10.1016/j.mayocpiqo.2023.05.002
10. Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: National Academies Press; 2015. https://doi.org/10.17226/19012
11. Toussaint LL, Bratty AJ. A randomized controlled trial of Amygdala and Insula Retraining (AIR) for Long Covid. Evid Based Complement Alternat Med. 2023;2023:7068326.
12. Crawley E, Gaunt DM, Garfield K, et al. Clinical and cost-effectiveness of the Lightning Process in addition to specialist medical care for paediatric chronic fatigue syndrome: randomised controlled trial. Arch Dis Child. 2018;103(2):155–164.
Research:
More info about Dr. Michael Donnino’s 2023 Psychophysiologic Symptom Relief Therapy (PSRT) pilot study in Long Covid [9]:
Dr. Michael Donnino’s 2023 Harvard-affiliated pilot study evaluated Psychophysiologic Symptom Relief Therapy (PSRT) as a potential intervention for individuals with Long Covid who had persistent symptoms but no identifiable organ damage.
Over 13 weeks, 23 participants engaged in virtual group sessions combining education about brain-body interactions, visualization of symptom-triggering activities paired with relaxation techniques, journaling for emotional processing, and mindfulness-based stress reduction. These components aimed to support nervous system regulation and reduce symptom responses.
Participants reported significant improvements in fatigue, pain, brain fog, and breathlessness. Notably, the proportion who strongly agreed that exercise worsened their symptoms—a common indicator of post-exertional malaise (PEM)—fell from 57% at baseline to just 1 participant after the program.
Although PEM was not assessed using lab measures like a 2-day cardiopulmonary exercise test (CPET), self-reported data suggest the intervention may help reduce post-exertional symptom exacerbation.
These preliminary findings support further investigation of Psychophysiologic Symptom Relief Therapy (PSRT) as a non-pharmacological approach for symptom relief in Long Covid.
More info about the Harvard PSRT study is here.
There were no conflicts of interest associated with this study.
There were two additional relevant studies worth mentioning, that didn’t fit into our 600 word submission. The BMJ also only allows 10 references per rapid response comment.
Gupta neuroplasticity-based mind-body RCT for Long Covid:
Toussaint and Bratty (2023) conducted a randomized controlled trial evaluating the effects of Amygdala and Insula Retraining (AIR), also known as the Gupta Program, on 100 individuals with Long Covid [11]. Participants were randomized to either the AIR intervention or a structurally equivalent active control group focused on general health and wellness. Over three months, the AIR group engaged in neuroplasticity-based techniques designed to reduce limbic system hypervigilance and regulate autonomic and immune responses.
Outcomes showed that AIR significantly reduced fatigue and increased energy compared to the control, with effect sizes approximately four times greater for fatigue reduction and double for energy improvement.
The study highlights Amygdala and Insula Retraining as a potentially effective, non-pharmacological intervention for post-viral fatigue syndromes. While promising, the trial had a smaller, self-selected sample, and it relied on self-reported outcomes rather than objectively measured physiological markers. Additionally, one of the authors was affiliated with Gupta program.
This trial adds to emerging evidence that neuroplasticity-based approaches may support recovery in individuals with Long Covid, though larger, independent studies are needed. Here is the Gupta study.
RCT of a Brain Retraining Intervention for Adolescents with ME/CFS:
A 2017 randomized controlled trial by Crawley et al.[12] evaluated the effectiveness of the Lightning Process (LP), a neurocognitive intervention, as an adjunct to specialist medical care (SMC) for children and adolescents with mild to moderate ME/CFS.
The study included 100 participants aged 12 to 18 and compared outcomes between those receiving SMC alone and those receiving SMC plus the LP—a neurocognitive training program combining elements of neurolinguistic programming, stress response retraining, and life coaching.
The primary outcome was physical function, assessed via the SF-36 Physical Function Subscale, with secondary outcomes including fatigue, anxiety, depression, and school attendance.
The LP group showed significantly greater improvements in physical function at six months, which were sustained at 12 months, alongside gains in fatigue and mental health measures.
Critics note that the primary outcome was altered after trial registration, which was originally school attendance. The authors changed it to self-reported physical function after registration, though prior to data analysis, because they reportedly thought it was a better way to reflect efficacy. We note other factors may impact school attendance (a parent could send an ill child to school or a parent could have a transportation issue preventing a well child from attending). Critics, however, stated that self-reported metrics are vulnerable to influence and placebo effects.
Critics also say there was also no blinding, though it’s unclear how the Lightning Process, which is not a pill, but rather a training program that includes inspiring healing testimonials, would feasibly be a fully blind study.
The trial suggests that neurocognitive approaches warrant further independent investigation in ME/CFS. Here is the published LP study.
Competing interests:
Recovered and significantly improved authors come from a mix of professional backgrounds including current and former teachers, university lecturers, an Associate Principal Scientist for a pharmaceutical company, a naturopath, physicists, technical writers, and more.
Elizabeth Carlson runs a personal blog focused on ME/CFS and Long Covid recovery with a paid programs guide and one affiliate link. Her portion of the proceeds is fully donated to ME/CFS research. Peter Hope based near Munich offers professional health coaching services for people with ME/CFS through a multi-pronged approach informed by his own recovery experience. Lindsay Vine, MPH, is an ME/CFS recovery coach and programs navigator after recovering from severe ME/CFS. Rachel Whitfield is biochemist turned leadership training consultant and is an unpaid volunteer co-chair of the Collaborative on Fatigue Following Infection (COFFI)’s consumer advisory group, of which Prof. Paul Garner and Fiona Symington (original BMJ post co-authors) are also members. No other recovered patients reported competing interests or affiliations.
Clinicians: Dr. Jake Hollis is a clinical psychologist who works with people living with ME/CFS and Long Covid, which he recovered from himself. Clinician Dr. Rebecca Kennedy, MD is a family medicine physician and coach at Resilience Health Care, a private clinic that provides help for patients with neuroplastic symptoms. She frequently works with ME/CFS and Long Covid patients. She was the former lead of the long COVID clinic at Kaiser Permanente Northwest.
Financial disclaimer: Elizabeth Carlson / Heal with Liz, has zero financial ties to Gupta, the Lightning Process, or PSRT methods.
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