Hope Rooted in Biology
I’m proud to have been a co-author of a letter in response to a piece in the British Medical Journal on ME/CFS. The original piece attracted a lot of criticism, and so a group of people who have recovered from ME/CFS, along with clinicians, felt it important to make clear that recovery is absolutely possible, and that there is mounting science demonstrating possible biological mechanisms underpinning this. Here is the letter:
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) Jill Hermon, Michigan, Recovered from moderate-to-severe ME/CFS and POTS
(6) Jake Hollis, PsychD, Brighton, England, Recovered from: ME/CFS, Long Covid, and POTS
(7) Peter Hope, Munich, Recovered from severe ME/CFS
(8) Verena Hurst, PhD in Biochemistry, Canton of Valais, Switzerland, Recovered from Long Covid
(9) Catherine Johns, Melbourne, Australia, Recovered after 43 years of ME/CFS (was once 100% bedbound)
(10) Ebba Karlsson, M.Sc. in Clinical Psychology, Stockholm, Sweden, Recovered from severe ME/CFS
(11) Eleanor Kirby, South Manchester, Recovered from Long Covid
(12) Lisa Ginsburg Lewis, New Hampshire, USA, Recovered from CFS and POTS (including 3 years bedbound)
(13) Kayla Murphy, Pennsylvania, USA, Recovered from post-viral CFS with extreme PEM and fibromyalgia
(14) Zsuzsa Pataki, Budapest, Hungary, Significantly improved from severe/bedbound ME/CFS
(15) Heather Stewart, Melbourne, Victoria Australia, recovered from CFS
(16) Kirsti Tenniswood, East Sussex, UK, Recovered from Long Covid
(17) Lindsay Vine, MPH, Vancouver, BC, Recovered from severe ME/CFS and a severe concussion sustained two years into having ME/CFS
(18) Rachel Whitfield, Bristol, UK, Recovered from Long Covid
Treating clinicians:
(19) Rebecca Kennedy, MD, Family Medicine Physician
(20) Jennifer L. Huggins, PsyD, Clinical Pain Psychologist
(21) 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
(22) Michael M. Dow, PsyD, Licensed Clinical Psychologist
(23) Howard Schubiner, MD, Clinical Professor, Michigan State University College of Human Medicine, Practicing at Cormendi Health
(6) Jake Hollis, PsychD and (11) Ebba Karlsson M.Sc. in Clinical Psychology are also clinicians.
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
Competing interests: No competing interests
