I welcome the suggestion (M. Sharpe et al. Nature 554, p. 31; 2018) that patients with myalgic encephalomyelitis (also known as chronic fatigue syndrome; ME/CFS) should not be dismissed out of hand. However, as someone who has been diagnosed with ME/CFS for 25 years, I contend that this argument should not be misused to perpetuate ineffective therapies that could raise false hopes and might amount to mistreatment.
As you point out (Nature 553, pp. 14–17; 2018), the PACE trial authors (including two co-authors of Sharpe et al. in Nature) and others promote a form of cognitive behavioural therapy that assumes ME/CFS symptoms can be reversed by teaching people to think differently, and a prescribed form of graded exercise that might be harmful.
Sharpe and colleagues urge readers not to reject scientific evidence that supports the use of such approaches. However, the Cochrane Reviews they cite rely on the results of the disputed PACE trial and several other studies that have similar methodological flaws. It is also notable that Sharpe and colleagues concluded: “There was little evidence of differences in outcomes between the randomised treatment groups at long-term follow-up” (see M. Sharpe et al. Lancet Psychiatry 2, 1067–1074; 2015).
The returns might be some way off, but the latest moves to pursue the growing evidence that ME/CFS symptoms are rooted in pathology is the proper approach (see, for example, go.nature.com/2fimftx).
Nature 15 Mar 2018; 555: 311
Subject: The very mysterious ailment, chronic fatigue syndrome, is more common than one might think
Chronic fatigue syndrome (CFS) — also known as myalgic encephalomyelitis or ME/CFS –– is a somewhat vague disorder that causes extreme fatigue and is more common than many people might think. The fatigue is not the kind of tired feeling that goes away after you rest; rather, the tiredness can last many months or years, limiting one’s ability to do ordinary daily activities. The main symptom of CFS can sometimes include: [a] feeling unwell for more than 24 hours after physical activity; [b] chronic muscle pain; [c] memory problems; [d] frequent headaches; [e] pain in multiple joints; [f] sleep problems; [g] sore throat; and [h] tender lymph nodes.
There are no tests for diagnosing or confirming ME/CFS, and other illnesses can mimic these symptoms. Therefore, physicians must first rule out other diseases before making a diagnosis of ME/CFS. No one knows what causes CFS; the etiology remains unknown. It is most common in women in their 40s and 50s, but it is possible to happen to anyone in any age group. Consequently, there is no unequivocal cure for ME/CFS –– thus, the goal of treatment has been simply to improve symptoms. It also comes as no surprise that many regard ME/CFS as a psychological or hysterical mindset in the afflicted patient. From 1994 until 2oo6 we published a Center for Environmental Genetics (CEG) NewsLetter, Interface (written in semi-lay language) that had a circulation of several hundred recipients. One of the most popular segments of Interface was called “Question & Answer” in which Readers were invited to inquire about anything involving health and the environment; the overwhelming topic (80-90% of questions) being asked about involved ME/CFS and related symptoms.
The attached article summarizes the latest news in the ME/CFS field. Patients having CFS have finally caught the attention of mainstream science, and dozens of exploratory studies are now under way. Scientists entering the field are beginning to use the powerful tools of modern molecular biology to search for any genes, proteins, cells and/or possible infectious agents involved. The goal of course is to develop a laboratory test to diagnose ME/CFS, and they want to identify molecular pathways to target with drugs. The US National Institutes of Health (NIH) in Bethesda, Maryland, bolstered the field last year by more than doubling spending for research into this condition. Included in this effort are funds for four ME/CFS research hubs in the United States that between them will receive $36 million over the next 5 years.
Nature 4 Jan 2o18; 553: 14–17