Living with ME/CFS and Long Covid - Managing symptoms

Wednesday: Professionals

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References

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What is ME/CFS and Long Covid

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• Dietz, J. H. Jr. (1980). Adaptive rehabilitation of the cancer patient. Current Problems in Cancer, 5(5), 1–56. https://doi.org/10.1016/s0147-0272(80)80002-x

• Carruthers, B. M., van de Sande, M. I., De Meirleir, K. L., Klimas, N. G., Broderick, G., Mitchell, T., et al. (2011). Myalgic Encephalomyelitis: International Consensus Criteria. Journal of Internal Medicine, 270(4), 327–338. https://doi.org/10.1111/j.1365-2796.2011.02428.x

• Davis, H. E., Assaf, G. S., McCorkell, L., Wei, H., Low, R. J., Re'em, Y., et al. (2021). Characterizing long COVID in an international cohort: 7 months of symptoms and their impact. EClinicalMedicine, 38, 101019. https://doi.org/10.1016/j.eclinm.2021.101019

 

 

Abnormal Response to Exertion

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• Carruthers, B. M., van de Sande, M. I., et al. (2012). Myalgic Encephalomyelitis – International Consensus Primer for Medical Practitioners.

• Physios for ME. (2021). Description of abnormal physiological response to exertion. Retrieved from https://www.physiosforme.com/physiological-responses

• Lien, K., Meyer, J., Strand, E. B., Paulson, G., & Cathcart, T. (2019). Abnormal blood lactate accumulation during repeated exercise testing in myalgic encephalomyelitis/chronic fatigue syndrome. Physiological Reports, 7(11), e14138. https://doi.org/10.14814/phy2.14138

• Davenport, T. E., Stevens, S. R., VanNess, J. M., & Stevens, J. (2019). Chronotropic intolerance in ME/CFS. Bulletin of the IACFS/ME, 27(1), 32–41.

• Reid, H., Ridout, A. J., Tomaz, S. A., Kelly, P., Jones, N., & Physical Activity Risk Consensus Group. (2022). Benefits outweigh the risks: a consensus statement on the risks of physical activity for people living with long-term conditions. British Journal of Sports Medicine, 56(8), 427–438. https://doi.org/10.1136/bjsports-2021-104281

• Long Covid Physio (2021)  https://longcovid.physio/podcast Season 1 Episode 10

 

 

 

Post-Exertional Malaise (PEM)

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• Chu, L., Valencia, I. J., Garvert, D. W., & Montoya, J. G. (2018). Onset patterns and course of myalgic encephalomyelitis/chronic fatigue syndrome. Frontiers in Pediatrics, 6, 12. https://doi.org/10.3389/fped.2018.00012

• Stussman, B., Williams, A., Snow, J., Gavin, A., Scott, R., & Nath, A. (2020). Characterization of post-exertional malaise in patients with ME/CFS: a retrospective review. Frontiers in Neurology, 11, 1025. https://doi.org/10.3389/fneur.2020.01025

• Cotler, J., Holtzman, C., Dudun, C., & Jason, L. A. (2018). A brief questionnaire to assess post-exertional malaise. Diagnostics (Basel), 8(3), 66. https://doi.org/10.3390/diagnostics8030066

• Davenport, T. E., Chu, L., Stevens, S. R., Stevens, J., Snell, C. R., & Van Ness, J. M. (2023). Two symptoms can accurately identify post-exertional malaise in myalgic encephalomyelitis/chronic fatigue syndrome. Work, 74(4), 1199–1213. https://doi.org/10.3233/WOR-22055

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Energy Management and Pacing

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• NICE. (2021). Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management (NG206). Retrieved from https://www.nice.org.uk/guidance/ng206

• Goudsmit, E. M., Nijs, J., Jason, L. A., & Wallman, K. E. (2011). Pacing as a strategy to manage activity in chronic fatigue syndrome: a consensus document. Disability and Rehabilitation, 34(13), 1140–1147. https://doi.org/10.3109/09638288.2011.635746

• Stevens, S. R., & Potratz, E. (2002). Top ten energy saving tips. The CFIDS Chronicle, 15(2), 18–19.

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Heart Rate Monitoring

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• Clague-Baker, N., Davenport, T. E., Madi, M., Dickinson, K., Leslie, K., Bull, M., & Hilliard, N. (2023). An international survey of experiences and attitudes towards pacing using a heart rate monitor for people with myalgic encephalomyelitis/chronic fatigue syndrome. Work, 74(4), 1225–1234. https://doi.org/10.3233/WOR-220512

• Stevens, S. R., & Davenport, T. E. (2010). Functional outcomes of anaerobic rehabilitation in a patient with chronic fatigue syndrome: case report with 1-year follow-up. Bulletin of the IACFS/ME, 18(3), 93–98.

• Physios for ME & University of Liverpool. (2023). Feasibility of pacing with a heart rate monitor for ME/CFS and Long Covid. Retrieved from https://www.physiosforme.com/hr-monitor-pilot.

 

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Cognitive Dysfunction

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• Clague-Baker, N., Tyson, S., Leslie, K., Dawes, H., Bull, M., & Hilliard, N. (2023). Home-based testing protocol to measure physiological responses to everyday activities in ME: a feasibility study. Fatigue: Biomedicine, Health & Behavior, 11(2–4), 142–156. https://doi.org/10.1080/21641846.2023.2245584

• Skiffington, H., & Breen, C. (2025). More than “Brain Fog”: Cognitive Dysfunction and the Role of Occupational Therapy in Long COVID. Cardiopulmonary Physical Therapy Journal, 36(1), 39–49. https://doi.org/10.1097/CPT.0000000000000274

 

 

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Orthostatic Intolerance

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• Leslie, K., Clague-Baker, N., Madi, M. A. A., Wiley, D., Parker, A., Bull, M., & Hilliard, N. (2023). An international survey of experiences and attitudes towards transcutaneous auricular vagus nerve stimulation for people with Myalgic Encephalomyelitis/chronic fatigue syndrome. Fatigue: Biomedicine, Health & Behavior, 12(1), 32–42. https://doi.org/10.1080/21641846.2023.2286029

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Resources

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• Physios for ME. (2024). One-page clinical guidance printout for working with people with ME and Long Covid. Retrieved from https://www.physiosforme.com/onesheetprintout With thanks to Kaja Heilo

• Physios for ME. (2023). Physiotherapy and ME/CFS: A Practical Guide. Retrieved from https://www.physiosforme.com/our-book