Intended for healthcare professionals
Rapid response to:
Nisreen A Alwan: What exactly is mild covid-19?
Paul Garner: A roller coaster of ill health, extreme emotions, and utter exhaustion
Patients’ experiences of “longcovid” are missing from the NHS narrative
Grant Stewart: My experience of covid-19—not just another experience
Covid-19: What do we know about “long covid”?
Re: Management of post-acute covid-19 in primary care
Greenhalgh and colleagues provide an invaluable foundation for management of long Covid (including both “post-acute Covid” and “chronic Covid”) in primary care. It would be helpful to have some explanation, however, for their use of the term “chronic fatigue syndrome” (CFS) rather than “myalgic encephalomyelitis/chronic fatigue syndrome” (ME/CFS). While authors might hope to circumvent longstanding controversy about those terms, management of long Covid does require clear, consistent understanding of the core ME/CFS debate.
The term “chronic fatigue syndrome” names a psychiatric condition that sometimes develops in reaction to acute viral infection.   It is essentially deconditioning that arises from inactivity when patients embrace faulty illness beliefs. By contrast, the term “myalgic encephalomyelitis” or “ME/CFS” names a chronic biomedical disease that typically develops after acute viral infection.  Criteria for CFS are very broad, while criteria for ME/CFS include only those with the hallmark symptom of post-exertional malaise. In the US, “ME/CFS” has been the term in use for governmental health organizations since 2015, including NIH, National Academy of Medicine, CDC and the Agency for Healthcare Research and Quality. In the UK, NICE has also shifted in recent years from the terms “CFS” and “CFS/ME” to the terms “ME” and “ME/CFS”. This change signals concern about biomedical disease as a guiding principle of revisions to the existing guideline for management. This year, in a striking shift in orientation, the UK funded the largest ever biomedical study of ME/CFS.
While CFS is a condition we can hope to resolve with holistic virus recovery strategies, ME/CFS is a chronic disease in its own right, one that requires its own treatments and research that will help develop them. In this sense ME/CFS is similar to autoimmune disease triggered by acute infection. Neither will be addressed through virus recovery strategies.
Researchers at work on understanding ME/CFS anticipated a growing population of long Covid patients with nonspecific symptoms, particularly post-exertional malaise. On that basis, research to track ties between Covid-19 and ME/CFS is now underway at NIH, Stanford, Harvard, Columbia, Yale, University of Montreal, Upsala University, and elsewhere.   A bill has been introduced to the US House of Representatives to fund biomedical research into ME/CFS in connection with Covid-19. In keeping with the NIH position on ME/CFS as postviral disease, Anthony Fauci has repeatedly informed the media that understanding of ME/CFS is important for understanding of long Covid.
When researchers and clinicians tie long Covid to CFS, they can reassure the public that nonspecific long Covid will be resolved through virus recovery strategies. Comforting as that approach may be, it is problematic on two counts. First, it is unscientific to ignore research that would lead us to expect some post-acute Covid patients will develop the chronic disease of ME/CFS. More than that, there is no basis for ignoring the many authoritative health organizations in the UK and US who now accept that research as essential to patient care. Before 2015 it was reasonable for clinicians to assume that patients with chronic postviral conditions can best be managed according to the psychiatric model of CFS, but that assumption is no longer aligned with professional consensus.
Second, Greenhalgh and colleagues rightly bring our attention to public concern that clinicians are dismissing nonspecific long Covid as anxiety or “hypochondria”. As a set of articles in Atlantic Monthly have named the problem, clinicians are “gaslighting” long Covid patients. Unfortunately, use of the term “CFS” encourages this problem because it names a condition primarily researched and managed in psychiatry. Moreover, the term “CFS” discourages clinicians from cautious, informed diagnostic reasoning about the difference between psychiatric responses to the challenges of Covid and postviral disease that has yet to be clarified in biomedical research.
It is profoundly important, as Greenhalgh and colleagues suggest, for clinicians to “honour the story” of long Covid patients, but doing so requires more than validation of their experience. It requires informedness about research that might explain and address chronic disease after acute Covid-19 infection. It requires a cautious, consistent diagnostic distinction between the explanatory model of CFS and that of ME/CFS. Most importantly, it requires truthfulness about that distinction in discussions with patients. When clinicians automatically attribute nonspecific long Covid to CFS, patients are more likely to experience the encounter as medical gaslighting.
Greenhalgh T, Knight M, A’Court C, Buxton M, Jusain L. Management of post-acute covid-19 in primary care. BMJ 2020;370:m3026.
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Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Board on the Health of Select Populations, Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington (DC): National Academies Press (US). February 10, 2015.
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Open Medicine Foundation. Breaking News: OMF Funded Study: COVID-19 and ME/CFS. https://www.omf.ngo/2020/05/19/omf-funded-study-covid-19-and-me-cfs/(accessed 14 August 2020).
Harvard ME/CFS Collaboration. About the ME/CFS Collaboration. https://endmecfs.mgh.harvard.edu/mesmerize/about/(accessed 14 August 2020).
Zimmer K. Could Covid-19 Trigger Chronic Disease in Some People? New Scientist. https://www.the-scientist.com/news-opinion/could-covid-19-trigger-chroni...(accessed 14 August 2020).
Raskin J, Rep. (2020). To amend the Public Health Service Act to authorize and provide for
the expansion, intensification, and coordination of the programs and activities of the National Institutes of Health with respect to post-viral chronic neuroimmune diseases, specifically myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), to support the COVID-19 response, and other purposes, H.R.7057, 116th Cong.
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O’Leary D. A concerning display of medical indifference: reply to ‘Chronic fatigue syndrome and an illness-focused approach to care: controversy, morality and paradox’. Med Humanit. Published Online First:29 June 2020. doi: 10.1136/medhum-2019-011743.
Competing interests: No competing interests