Tell the Truth About the Scientific Challenge to “Chronic Fatigue Syndrome”
Dear Editor
We have heard a great deal in mainstream media about the “whole lot of awfulness” that Michael Sharpe has endured,[1] [2] [3] so much so as to raise questions about use of media to garner support for scientifically challenged ideas. The trouble is that in all that attention, no one mentioned the most salient “awfulness” of all: that Sharpe’s approach has been rejected by distinguished researchers and governmental health authorities across the globe.
It should concern us all that the BMJ would publish material on this now-urgent issue with the same unscientific spin that the media has employed. The US National Academy of Sciences concluded in 2015 that it has been an error to diagnose and treat ME/CFS as a psychological condition.[4] That report was then supported by an extensive evaluation of evidence on both sides by the Agency for Healthcare Research and Quality.[5] They concluded not only that the Pace trial was biased on three counts, but that the Oxford definition of CFS, upon which it was based, should be abandoned. The NIH pursued its own investigations and reached the same conclusions.[6]
All US governmental health organizations now reject the term “chronic fatigue syndrome”, eliminating recommendations aligned with the Pace trial. That consensus has rapidly spread across the globe, so much so that NICE came on board last year with new draft guidance along US lines, abandoning the term ‘chronic fatigue syndrome’ in favor of ‘ME/CFS’. [7]
Now that we’re suddenly grappling with millions of patients across the globe with a post-viral condition similar to ME/CFS, the BMJ has chosen to publish a series of articles about chronic fatigue syndrome that overtly fail to inform clinicians about the new scientific consensus. Without a word of explanation, the BMJ’s long covid Practice Pointers [8] set this questionable standard, aligning long covid with CFS as if the scientific world has never challenged the safety of that construct.
Clearly long covid patients, and ME/CFS patients, have a right to the same scientific standards that other patients benefit from. No publication can claim unbiased standards on this controversy if it publishes material on CFS that fails to explain the substantial scientific challenge. If the case for reviving the CFS construct is strong, why not present both sides? If Sharpe and colleagues can address the safety concerns of researchers and policy makers across the globe, clinicians who struggle to manage long covid need to see them do so.
[4] 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.
[6] Green CR, Cowan P, Elk R, O'Neil KM, Rasmussen AL. (2015). National Institutes of Health Pathways to Prevention Workshop: Advancing the research on myalgic encephalomyelitis/chronic fatigue syndrome. Ann Intern Med 2015;162(12): 860-5.
Rapid Response:
Tell the Truth About the Scientific Challenge to “Chronic Fatigue Syndrome”
Dear Editor
We have heard a great deal in mainstream media about the “whole lot of awfulness” that Michael Sharpe has endured,[1] [2] [3] so much so as to raise questions about use of media to garner support for scientifically challenged ideas. The trouble is that in all that attention, no one mentioned the most salient “awfulness” of all: that Sharpe’s approach has been rejected by distinguished researchers and governmental health authorities across the globe.
It should concern us all that the BMJ would publish material on this now-urgent issue with the same unscientific spin that the media has employed. The US National Academy of Sciences concluded in 2015 that it has been an error to diagnose and treat ME/CFS as a psychological condition.[4] That report was then supported by an extensive evaluation of evidence on both sides by the Agency for Healthcare Research and Quality.[5] They concluded not only that the Pace trial was biased on three counts, but that the Oxford definition of CFS, upon which it was based, should be abandoned. The NIH pursued its own investigations and reached the same conclusions.[6]
All US governmental health organizations now reject the term “chronic fatigue syndrome”, eliminating recommendations aligned with the Pace trial. That consensus has rapidly spread across the globe, so much so that NICE came on board last year with new draft guidance along US lines, abandoning the term ‘chronic fatigue syndrome’ in favor of ‘ME/CFS’. [7]
Now that we’re suddenly grappling with millions of patients across the globe with a post-viral condition similar to ME/CFS, the BMJ has chosen to publish a series of articles about chronic fatigue syndrome that overtly fail to inform clinicians about the new scientific consensus. Without a word of explanation, the BMJ’s long covid Practice Pointers [8] set this questionable standard, aligning long covid with CFS as if the scientific world has never challenged the safety of that construct.
Clearly long covid patients, and ME/CFS patients, have a right to the same scientific standards that other patients benefit from. No publication can claim unbiased standards on this controversy if it publishes material on CFS that fails to explain the substantial scientific challenge. If the case for reviving the CFS construct is strong, why not present both sides? If Sharpe and colleagues can address the safety concerns of researchers and policy makers across the globe, clinicians who struggle to manage long covid need to see them do so.
[1] Kelland K. Online activists are silencing us, scientists say. Reuters, 13 March 2019. https://www.reuters.com/investigates/special-report/science-socialmedia/ (accessed 25 June 2021).
[2] Smyth C. Trolls force Oxford expert to stop research on ME. The Times, 16 March 2019. https://www.thetimes.co.uk/article/trolls-force-oxford-expert-to-stop-re... (accessed 25 June 2021).
[3] Andrews A. ME and the perils of internet activism. The Guardian, 28 July 2019. https://www.theguardian.com/society/2019/jul/28/me-perils-internet-activ... (accessed 25 June 2021).
[4] 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.
[5] Smith ME et al. Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Evidence Report/Technology Assessment No. 219. Addendum July 2016. https://effectivehealthcare.ahrq.gov/sites/default/files/pdf/chronic-fat... (accessed 25 June 2021).
[6] Green CR, Cowan P, Elk R, O'Neil KM, Rasmussen AL. (2015). National Institutes of Health Pathways to Prevention Workshop: Advancing the research on myalgic encephalomyelitis/chronic fatigue syndrome. Ann Intern Med 2015;162(12): 860-5.
[7] National Institute for Health and Clinical Excellence. NICE draft guidance addresses the continuing debate about the best approach to the diagnosis and management of ME/CFS, 2020.
https://www.nice.org.uk/news/article/nice-draft-guidance-addresses-the-c... (accessed 25 June 2021).
Competing interests: No competing interests