Introduction
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID have emerged as debilitating conditions that significantly impact the lives of millions worldwide. While the medical community continues to explore effective treatments, one controversial approach, Graded Exercise Therapy (GET), has garnered significant criticism. This blog post looks at why GET is not only ineffective but also potentially harmful for individuals suffering from ME/CFS and Long COVID.
Understanding Graded Exercise Therapy (GET)
GET is a structured exercise program that aims to gradually increase a patient's physical activity level. Initially developed for conditions like depression and general fatigue, GET is based on the theory that deconditioning contributes to the symptoms of ME/CFS and Long COVID. Proponents argue that a slow and steady increase in exercise can rebuild stamina and improve overall health.
Why GET Doesn't Work for ME/CFS and Long COVID
Fundamental Misunderstanding of the Conditions ME/CFS and Long COVID are complex illnesses with multifaceted symptoms, including severe fatigue, post-exertional malaise (PEM), cognitive dysfunction, and autonomic disturbances. The core issue is not simple deconditioning but rather an abnormal response to exertion. Patients often experience exacerbation of symptoms following physical activity, known as PEM, which is not addressed by GET.
Lack of Scientific Support Several studies and patient surveys have highlighted the ineffectiveness of GET for ME/CFS. For instance, the PACE trial, initially touted as proof of GET's efficacy, has been widely criticized for methodological flaws, including bias, inadequate definitions of recovery, and non-transparent data reporting. Subsequent reanalysis of the PACE trial data and other studies has shown no significant benefit from GET compared to pacing and other non-exertional approaches .
Ignoring Patient Experiences A substantial number of ME/CFS and Long COVID patients report worsening symptoms following GET. Patient advocacy groups and anecdotal evidence consistently indicate that exercise exacerbates their condition, leading to prolonged recovery periods and further deterioration of health .
The Scientific Explanation: Why GET Makes People Worse
Post-Exertional Malaise (PEM) The hallmark of ME/CFS is PEM, which is characterized by a significant worsening of symptoms following physical or mental exertion. PEM is believed to result from abnormalities in energy metabolism and immune system function. Studies have shown that patients with ME/CFS have impaired aerobic metabolism, leading to an energy deficit during physical activity. This results in an abnormal accumulation of lactate in muscles and prolonged recovery times . GET, by pushing patients to increase activity, directly triggers PEM, leading to worsening of symptoms.
Dysregulated Immune Response Research indicates that ME/CFS patients have an ongoing immune response, which includes elevated levels of pro-inflammatory cytokines. Physical exertion has been shown to exacerbate this immune activation, leading to increased inflammation and symptom severity . This heightened inflammatory response following exercise is a likely reason why GET can worsen the condition of ME/CFS patients.
Autonomic Nervous System Dysfunction Many ME/CFS and Long COVID patients experience autonomic nervous system dysfunction, manifesting as orthostatic intolerance, POTS (Postural Orthostatic Tachycardia Syndrome), and other related symptoms. Exercise can exacerbate these symptoms by further stressing an already dysregulated autonomic system, leading to increased heart rate, blood pressure issues, and overall autonomic instability .
The Harmful Effects of GET
Exacerbation of Symptoms The most immediate and concerning consequence of GET is the exacerbation of symptoms, particularly PEM. Patients often experience a significant decline in function after following a GET regimen, leading to increased fatigue, pain, and cognitive impairment.
Psychological Impact The failure of GET can also lead to psychological harm. Patients may feel blamed for not improving, leading to increased anxiety, depression, and a sense of hopelessness. The pressure to adhere to a failing treatment can erode trust in healthcare providers and the medical system.
Delayed Appropriate Care By promoting GET, healthcare systems may neglect more suitable and individualized treatments. This can delay the adoption of management strategies like pacing, which respects the patient's energy limitations and focuses on maintaining a stable activity level without triggering PEM.
Alternatives to GET
Pacing Pacing involves balancing activity with rest to avoid overexertion. Patients learn to listen to their bodies and manage their energy levels to prevent PEM. This approach respects the unpredictable nature of ME/CFS and Long COVID and allows patients to maintain a baseline of functionality without risking severe setbacks.
Symptom Management Addressing individual symptoms, such as pain, sleep disturbances, and cognitive dysfunction, can improve the quality of life. Pharmacological and non-pharmacological interventions tailored to specific symptoms can offer relief and enhance daily functioning.
Supportive Care Psychological support, nutritional counselling, and social services can play a crucial role in managing these conditions. A holistic approach that considers the physical, emotional, and social aspects of health is essential for improving patient outcomes.
Conclusion
Graded Exercise Therapy, while well-intentioned, fails to address the complex nature of ME/CFS and Long COVID. Its reliance on a simplistic deconditioning model ignores the unique pathophysiology of these conditions and often results in harm rather than benefit. Patients and healthcare providers must prioritize individualized, evidence-based approaches that respect the limitations and experiences of those affected.
Personal Experience with GET
In my personal experience, graded exercise significantly worsened my condition. Despite being extremely fit and physically active before falling ill, persisting with these exercises made me severely unwell, I would never recommend this approach. It set me back and severely worsened my condition.
However, further down the track, once you've made significant improvements, adding more activity to your routine becomes an essential part of recovery and reclaiming your life. This may sound contradictory, but it's not. As I mention on my homepage, improving health needs to be done in the right order.
Just as you wouldn't advise someone with a broken leg to start physio and graded exercise before the bone has healed and the inflammation has subsided, the same logic applies to ME/CFS. You can't just start exercising and expect improvement; you'll only do serious damage. It's vital to take advice from those who have made significant health improvements and truly understand these conditions to move toward better health.
References
Wilshire, C. E., Kindlon, T., Matthees, A., & McGrath, S. J. (2018). Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial. Fatigue: Biomedicine, Health & Behavior, 6(1), 45-56.
Geraghty, K. J. (2017). ‘PACE-Gate’: When clinical trial evidence meets open data access. Journal of Health Psychology, 22(9), 1106-1112.
Twisk, F. N., & Maes, M. (2009). A review on cognitive behavioral therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS. Neuro Endocrinol Lett, 30(3), 284-299.
Vink, M., & Vink-Niese, A. (2019). Graded exercise therapy does not restore the ability to work in ME/CFS patients - Rethinking of a Cochrane review. Work, 62(4), 617-623.
Jones, D. E., & Newton, J. L. (2010). Post-exertional malaise in chronic fatigue syndrome: the role of deconditioning. Journal of psychosomatic research, 68(1), 5-8.
Hornig, M., Montoya, J. G., Klimas, N. G., Levine, S., Felsenstein, D., Bateman, L., ... & Lipkin, W. I. (2015). Distinct plasma immune signatures in ME/CFS are present early in the course of illness. Science Advances, 1(1), e1400121.
Hollingsworth, K. G., Hodgson, T., Macgowan, G. A., Blamire, A. M., Newton, J. L. (2010). Impaired cardiac function in chronic fatigue syndrome measured using magnetic resonance cardiac tagging. Journal of Internal Medicine, 269(3), 265-273.
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