Applying ME/CFS (Chronic Fatigue Syndrome) Principles of Care to Long Covid
There has been thirty years of clinical experience and research in ME/CFS that can be applied to Long Covid while the research is underway. Many of the principles and approach have been articulated in the 2020 version of the United States ME/CFS Clinician Coalition guidelines for Diagnosing and Treating ME/CFS. Rezilir is an active participant in research in fatiguing illness and is actively helping to create a multi-center registry on ME/CFS that includes the Neuroautoimmune Center led by Dr. Nancy Klimas.
We recognize that many patients with ME/CFS do not always receive the following in their care:
- Access to a clinician who fully understands ME / CFS
- Recognition that their symptoms are real and can be addressed
- Thorough differential diagnosis and approach that can address all root causes that are contributing to their symptoms
- Sufficient and appropriate time between the clinician and the patient
- Detailed coaching through practical health issues such as managing the energy envelope
- Access through referrals to a specialist for co-morbid issues such as cranial cervical instability (CCI)
While the exact pathogenesis of the condition called ME/CFS is still unknown, it is clear that it is a complex chronic multifactorial syndrome. All patients need to have a thorough evaluation that incorporates a broad differential diagnosis including endocrine/metabolic, rheumatologic, neurologic, psychiatric, sleep, infectious, hematologic, gastrointestinal, cardiovascular, environmental exposures, and oncologic disorders. ME/CFS is often accompanied by a spectrum of co-morbid disorders such as fibromyalgia, irritable bowel syndrome, sleep disorder, autonomic dysfunction, autoimmune manifestations, effects of hazardous environmental exposure, latent chronic infections, posttraumatic experiences and/or limbic system activation.1 The therapeutic relationship building starts with a comprehensive medical history and physical exam. The detailed timeline of a patient’s life and illness helps discover root causes that can contribute to fatiguing illness.
There is a specific relationship between age, illness duration, and symptoms in ME/CFS. Research data illustrated a “crisis phase” earlier in the illness. The individuals who are in the early phase of their fatiguing illness need acute support and resources to deal with the devastating aspects.2 Timely evaluation is crucial for achieving desirable health outcomes. Early diagnosis and interventions can help the patient manage this chronic illness and possibly improve the quality of life. Specific parts of an initial assessment will include:
- Post-exertional malaise assessment – initiated with using PEM-focused questionnaires that may extend to an exercise physiology evaluation with cardiopulmonary exercise testing (CPET) to detect characteristic abnormalities and timely develop a personalized plan for patient’s physical activities within an “energy envelope.” This careful strategy may help stop physical deconditioning while ensuring the patient’s gain of physical strength.
- Autonomic dysfunction assessment includes evaluating the patient’s subjective reports on the autonomic/orthostatic symptom scale, passive lean test following the NASA protocol.
- Cognitive evaluation which includes subjective and objective testing of cognitive function and imaging with NeuroQuant MRI if needed.
- Laboratory/Biomarkers testing including testing for infections, immune dysfunction (e.g., cytokines, natural killer cells), genomics, neuroendocrine disbalance, autoimmunity, mitochondrial function, allergy, nutrition status, and environmental exposure markers.
Treatment needs to be tailored to the specific evaluation findings and potential root causes. While there are no FDA-approved pharmacologic treatment protocols for ME/CFS there are protocols that can address specific issues such as Postural Orthostatic Tachycardic Syndrome (POTS), Mast Cell Activation Syndrome (MCAS), cognitive dysfunction, and unrefreshing sleep. With Post Exertional Malaise (PEM), detailed coaching is provided to reduce the number of “crashes” and to help patients manage their energy envelope. There are several integrative and functional approaches to care that we offer onsite that in our clinical experience can improve functional status and help address root causes. These interventions can include but are not limited to:
- Nutritional assessment and coaching to maintain a healthy diet
- Sleep interventions
- Limbic system activation interventions
- Osteopathic consultation and intervention to address Cranial Cervical Instability
- Environmental assessment of indoor air pollution including mold and appropriate interventions to address mold and chemical exposures
- Management of neuroinflammation and neurodegeneration including fatty acid treatments, hyperbarics, and compounded pharmaceuticals
- Detoxification protocols if indicated by objective testing
- Treatment of chronic infections (e.g., viral, tick borne infections) if indicated with herbs, antibiotics (if indicated), and immune support
- Mitochondrial evaluation (e.g., transcriptomics) and appropriate support as indicated
1. Johnston S, Brenu EW, Staines D, Marshall-Gradisnik S. The prevalence of chronic fatigue syndrome/ myalgic encephalomyelitis: a meta-analysis. Clin Epidemiol. 2013;5:105-110. doi:10.2147/CLEP.S39876
2. U.S. ME/CFS Clinician Coalition. (2020). Resources for medical providers caring for people with myalgic encephalomyelitis/ chronic fatigue syndrome. https://mecfscliniciancoalition.org/
3. U.S. ME/CFS Clinician Coalition. US ME/CFS Clinician Coalition Letter: Post-COVID “LongHaulers” and ME/CFS. October 30, 2020 https://drive.google.com/file/d/15Z1pPMsTvxKe_eJtNG3XyXNxx9gB2xxU/view
4. Naess H, Sundal E, Myhr K-M, Nyland HI. Postinfectious and chronic fatigue syndromes: clinical experience from a tertiary referral center in Norway. In Vivo. 2010;24(2):185-188. http://iv.iiarjournals.org/content/24/2/185.long
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7. Chu L, Valencia IJ, Garvert DW, Montoya JG (2019). Onset, patterns and course of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Frontiers in Pediatrics 7 (12). doi: 10.3389fped.2019.00012.
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