The primary contributing factor of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a broken energy system (often triggered by a virus or other environmental factors) not chronic pain. 1 2 3 4 The defining characteristic of ME/CFS and long COVID is post-exertional malaise (PEM), which refers to the worsening of symptoms following even minor physical or mental exertion. 5 6 7
Pain is just one of many symptoms experienced by individuals with ME/CFS, but there is no research to support the notion that it is due to hypersensitivity of nerve signals to the brain. 8 9 Symptoms can also include severe fatigue, sleep problems, cognitive issues (often referred to as “brain fog”), and orthostatic intolerance. While both ME/CFS and long COVID can involve complex neurophysiological responses, there is no conclusive evidence at this time to suggest that pain in ME/CFS is solely due to nerve hypersensitivity.
We write this in response to a misleading article published in The Conversation on June 26th 2024 (see here), suggesting that ME/CFS and long COVID result from chronic pain, and that treating hypersensitive nerves offers hope for these two conditions; we clarify that ME/CFS is far more complex.
Fibromyalgia is believed to be a chronic pain condition which is most commonly treated by relieving or managing the pain (although this is also an over-simplification of a complex condition). 10 11 12 However, ME/CFS and long COVID are not easily managed by addressing pain alone, because of the 100-200+ symptoms that arise due to the malfunctioning neuroendocrine, immune, and autonomic systems of the body. 13 14 Current treatment approaches often focus on symptom management, but leave many people with ME/CFS without adequate relief.15
An individual with ME shared “For myself, I feel like ME/CFS has halted my life. I went from running Ultra Marathons, completing Iron Mans and being on-the-go every day to now spending days laying down, too weak to even lift my phone up when I’m at my worst.” 16
As of today, there is no cure for ME/CFS. Further research, better funding, and enhanced healthcare provider education is needed for developing comprehensive treatment approaches that address the multifaceted nature of this condition.
What is ME/CFS?
Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), is a complex, chronic illness which affects multiple body systems, including the neurological, immune, and endocrine systems. It manifests through a variety of symptoms such as profound exhaustion, cognitive dysfunction, muscles and joint pain, unrefreshing sleep, headaches, sensory issues, and more. These symptoms are not alleviated by rest and are exacerbated by physical or mental activity. Prevalence in Aotearoa/NZ is estimated due to insufficient coding and tracking in the health system. Prorated overseas data (pre-pandemic) suggests that there were at least 25,000 people living with ME/CFS, that’s 1 in 250 adults and 1 in 134 youth. Based on US medical insurance claims, the NZ figure is more likely to be 45,000. With up to fifty percent of long COVID cases meeting the diagnostic criteria for ME/CFS these numbers will rise exponentially. ME/CFS is currently classified as a “chronic illness” rather than a disability in New Zealand, which poses significant challenges for policy recognition, support services, and funding. As a consequence, the lack of awareness and education among healthcare professionals leads to inaccurate patient diagnosis, and ineffective treatment and management plans.
Who is ANZMES?
We are the National Advisory on ME/CFS (and associated conditions) in Aotearoa/New Zealand. With four decades of knowledge and experience, we are the trusted leaders in ME/CFS research, representation, and education. Our expertise comes from a reputable medical team of advisors, including a world renowned expert and MNZM recipient, a fellow of the Royal NZ College of General Practitioners (RNZCGP) and a network of academic researchers, clinicians, and representatives from the ME/CFS community. The executive committee comprises experts in their respective fields for governance, policy, leadership, representation, and education.
Always a trail-blazer, it was the first ME charity of its kind in the world, established in 1980, as ANZMES, to provide support, information dissemination, and representation, achieving past outcomes through dedication, passion, time, and knowledge of lived experience. Today, the organisation leads as a Royal New Zealand College of General Practitioners (RNZCGP) Continuing Medical Education (CME) Registered Provider, proud funder of vital research, and steward of the community voice. We continue to disseminate evidence-based best practice. We represent the ME/CFS voice nationally in our advisory capacity, and globally through advocacy and leadership, as a founding member of the World ME Alliance.
1 The ME association (2019). MEA Summary Review: The role of Mitochondria in ME/CFS. Retrieved from: https://meassociation.org.uk/wp-content/uploads/MEA-Summary-Review-The-Role-of-Mitochondria-in-MECFS-12.07.19.pdf
2 Harvard Health (2019). Chronic fatigue syndrome: Gradually figuring out what’s wrong. Retrieved from: https://www.health.harvard.edu/blog/chronic-fatigue-syndrome-gradually-figuring-out-whats-wrong-201911141822
3 ANZMES (2023). World ME Day asks you to learn about the broken energy system in ME/CFS. Retrieved from: World ME Day asks you to learn about the broken energy system in ME/CFS – PRESS RELEASE – ANZMES
4 Health Rising (2022). Novel Approach Brings New Insights Into ME/CFS Mitochondria. Retrieved from: https://www.healthrising.org/blog/2022/03/27/novel-approach-mitochondria-chronic-fatigue-syndrome/
5 ANZMES (2023) Voices of ME. Retrieved from: https://anzmes.org.nz/voices-of-me/
6 ANZMES (2023). National Advisory on ME releases Best Practice Guidance with clinician and researcher support. Retrieved from: https://anzmes.org.nz/national-advisory-on-me-releases-best-practice-guidance-with-clinician-and-researcher-support/
7 ANZMES (2023). ANZMES release Resources for Primary Care. Retrieved from: https://anzmes.org.nz/anzmes-release-resources-for-primary-care/
8 Tate W, Walker M, Sweetman E, Helliwell A, Peppercorn K, Edgar C, Blair A, Chatterjee A. Molecular Mechanisms of Neuroinflammation in ME/CFS and Long COVID to Sustain Disease and Promote Relapses. Front Neurol. 2022 May 25;13:877772. doi: 10.3389/fneur.2022.877772. PMID: 35693009; PMCID: PMC9174654.
9 RNZ Health (2023). Long Covid and ME/CFS are the same illness, researcher says. Retrieved from: https://www.rnz.co.nz/national/programmes/ninetonoon/audio/2018892129/long-covid-and-me-cfs-are-the-same-illness-researcher-says
10 Fibromyalgia – Arthritis New Zealand
11 Healthline (2023). Everything You Need to Know About Fibromyalgia. Retrieved from: Fibromyalgia: Symptoms, Treatment, Causes, Triggers, and More (healthline.com)
12 Mayo Clinic (2021). Fibromyalgia. Retrieved from: Fibromyalgia – Symptoms & causes – Mayo Clinic
13 Tate W, Walker M, Sweetman E, Helliwell A, Peppercorn K, Edgar C, Blair A, Chatterjee A. Molecular Mechanisms of Neuroinflammation in ME/CFS and Long COVID to Sustain Disease and Promote Relapses. Front Neurol. 2022 May 25;13:877772. doi: 10.3389/fneur.2022.877772. PMID: 35693009; PMCID: PMC9174654.
14 ANZMES (2022).World ME Day – Learn From ME. Retrieved from: World ME Day – Learn From ME – ANZMES
15 Tuller, D (2024). Trial by Error: The Conversation recycles biopsychosocial nonsense. https://virology.ws/2024/06/28/trial-by-error-the-conversation-recycles-biopsychosocial-nonsense/
16 ANZMES Member (2023). Retrieved from: Voices of ME – ANZMES
