For years, the prevailing “wisdom” about people diagnosed with chronic fatigue syndrome was they were just terribly out of shape and harbored irrational fears they had an organic illness. The favored treatments were graded exercise therapy, designed to counter the deconditioning with a program of progressively increasing activity, a form of cognitive behavior therapy specifically designed to address the unfounded illness beliefs, or a combination of the two.
In the U.S., this psychological and behavioral theory of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), as the illness is now often called, has steadily lost ground in favor of a biomedical one. In 2015, a landmark report from the Institute of Medicine (now the National Academy of Medicine) described ME/CFS as a “serious, chronic, complex, systemic disease that often can profoundly affect the lives of patients.” Three years ago, the Centers for Disease Control and Prevention dropped its recommendations for graded exercise therapy and cognitive behavior therapy (CBT) as treatments for ME/CFS treatments — an implicit acknowledgement that the findings from research purporting to prove their effectiveness could not be trusted.
However, graded exercise therapy and cognitive behavior therapy have remained the dominant and deeply entrenched interventions for ME/CFS in the U.K., where this approach first emerged three decades ago. The two interventions have been nearly unquestioned as the official standard of care and routinely promoted at specialized clinics around the country. The most powerful voices in the medical and academic establishments have doggedly upheld and defended them. Until now.
In a draft of new ME/CFS clinical guidelines released last week, a key British agency has not only explicitly rejected graded exercise therapy and cognitive behavior therapy as treatments for this condition but also the rationales behind them. The draft from the National Institute for Health and Care Excellence (NICE) acknowledges that there is “no therapy based on physical activity or exercise that is effective as a treatment or cure for ME/CFS” — just what patients have argued for years. Moreover, notes the draft, “CBT is not a cure for ME/CFS and should not be offered as such,” although the therapy may help patients “manage their symptoms.” The new guidelines will replace a 2007 version that promoted the two interventions.
The draft represents a welcome repudiation of a deeply flawed body of research that had been conducted by a prominent group of British psychiatrists and other mental health experts. Members of this group first developed the psychological and behavioral treatment approach for ME/CFS in the late 1980s. They have single-mindedly insisted on it ever since, disparaging critics who raised legitimate concerns about their research as “anti-science” zealots. In developing its draft, NICE reviewed the science and assessed the evidence from studies promoting graded exercise therapy and cognitive behavioral therapy to be of “low” or “very low” quality.
The NICE draft will undergo a six-week public comment period and further review, with a final version to be published in April. While revisions are possible, the draft itself has already been hailed as a major advance by ME/CFS patients and advocates in the U.K. and across the U.S. Since history shows that old habits die hard in primary care medicine, every new report based on an accurate evaluation of the science represents an important step toward educating well-meaning but poorly informed physicians.
Up to 2.5 million Americans live with chronic fatigue syndrome, many of them undiagnosed. The illness is often triggered by an acute viral infection, like mononucleosis or the flu, and leaves some people homebound, and even bedbound. Although studies have documented a range of neurological, metabolic, and other dysfunctions, no causes of the condition or biomarkers for it have been identified so far. No medications have been approved to treat the underlying illness, although a few can relieve some symptoms.
In addition to overwhelming fatigue and cognitive problems, a cardinal symptom of ME/CFS is a prolonged relapse after minimal physical or mental exertion, called post-exertional malaise or, in the NICE draft, post-exertional symptom exacerbation. People with ME/CFS routinely report significant worsening of symptoms if they push themselves beyond their capacities. Surveys have repeatedly found that people with ME/CFS are far more likely to report harms than benefits from interventions that encourage them to increase their activity levels.
In the U.S., as in the U.K., many primary care providers have remained skeptical of ME/CFS despite the 2015 Institute of Medicine report and the subsequent change in the CDC’s recommendations. Dismissing the possibility that it is an organic disorder, these clinicians continue to refer patients for psychotherapy and exercise programs, at least in part because of the absence of recognized alternatives.
For their part, patients and advocates in the U.S. have spent years pressing the National Institutes of Health to increase funding for research into biomedical causes and pharmacological treatments. While these efforts have achieved some success, funding still lags far behind the amounts allocated for research into many conditions that are less debilitating and affect fewer people.
Ironically, it has taken a pandemic to shine a brighter spotlight on ME/CFS.
A significant number of people diagnosed with Covid-19 report disabling symptoms that persist for months after they have cleared the virus that causes it. As Anthony Fauci, the director of the National Institute for Allergy and Infectious Diseases, has observed, symptoms experienced by post-Covid-19 patients are “highly suggestive” of those associated with ME/CFS. And like ME/CFS patients before them, many of these Covid-19 “long-haulers” report that health care providers have been similarly dismissive, automatically attributing their symptoms to stress, depression, and deconditioning, and recommending psychotherapy and exercise.
Medicine can be both wondrously innovative and stubbornly resistant to change. In 1847, the Hungarian physician Ignaz Semmelweis could not convince his fellow doctors in Vienna to wash their hands before delivering babies as a way to prevent often fatal cases of puerperal fever in new mothers. It would be another 30 years before Joseph Lister gained widespread acceptance for his approach to sterilization and aseptic surgery.
Things are better these days, with an average time lag of only 17 years before research evidence reaches clinical practice. The British psychiatrists and others still pushing graded exercise therapy and cognitive behavioral therapy for ME/CFS have done their part to keep the median delay as high as it is.
Clinical guidelines developed by NICE are influential in medical practice around the world, including in the U.S. Its new draft on ME/CFS is a long-overdue and much-needed corrective to years of misguided and potentially harmful recommendations.
David Tuller is a senior fellow in public health and journalism at the Center for Global Public Health at the University of California, Berkeley. Members of the ME/CFS patient and advocacy community have donated to crowdfunding campaigns in support of Tuller’s position at Berkeley. Steven Lubet is a professor of law at Northwestern University’s Pritzker School of Law. He has been living with chronic fatigue syndrome since 2006.
Such a relief after 30 years of the insanity of ME rollercoaster.
To make things better, this news would have to be read by and penetrate the minds and hearts of every doctor, nurse, social worker, so-called carer, and member of the public who regularly traumatizes us with their judgements, stigmatising, accusations, and abundance of lies and misapprehensions that fill our medical records and make visits to them and requests for help so futile and demoralising. In the UK we are supposed to have free health care. Going to a doctor or having them come to us when we are bedbound is just a pathetic, hope-destroying experience. I have been shouted at, scorned and denied treatment for symptoms of ME, POTS and EDS, even after they were diagnosed by a specialist and had tilt table test and hours of assessments. And unrelated infections which are much longer lasting and dangerous to my health than to a healthy person, have been scoffed at, with the same assumption that I make things up to get attention or drugs. I have had to pay for an NHS doctor working in a private clinic in order to obtain common antibiotics sufficient to cure a virulent UTI after the head of my surgery gleefully said to me that he would not prescribe them “next time”. Every time I require medical attention, I get the same lack of human understanding, and I have changed doctors and surgeries without finding any who will even listen. It costs me more than £50 for a trip to the local surgery, including payment for wheelchair taxi and a carer to help me get ready and accompany and get me undressed when I return home. I have never found these 8 minute appointments beneficial, as the doctors do not listen to even a one-minute clear explanation of the problem that brought me there. I have rarely even tried during the past two years, as despite my appropriate appearance and respectful behaviour, I get scorn and disbelief from them, along with a disgusted pronouncement that I just need to get out of bed and exercise, and a warning, “And don’t read things on the internet!”. I never read anything except the most highly regarded experts and websites with proper research findings. The level of callousness has caused me untold pain, and in the earlier years, following their advice, led to my becoming bedbound for most of the time, and a number of other problems worsening.
I think it will not change for me, as I am now in my late 60s and there is not a single GP in my town who is even willing to read their own NHS info pages regarding this illness!
I speak bluntly here in order to plead for a massive and intensive doctor, nurse, and social care system education programme that is REQUIRED. There will be no justice until that happens.
Thank you for this.
One of the prominent symptoms of myalgic encephalomyelitis is post-exertional malaise. Because exercise by this disease’s definition makes it worse, the idea of prescribing exercise to an ME patient is complete nonsense and a fool’s errand.
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