UPDATE: NICE has announced a delay in issuing its revised guideline. I will have more on this in a few days.
Just after midnight on Wednesday in London (Tuesday afternoon CDT), the British National Institute for Health and Care Excellence (NICE) will release the final version of its new guideline for ME/CFS treatment. Based on the draft circulated earlier this year, it appears that NICE is finally going to rescind its 2007 recommendation for Graded Exercise Therapy and Cognitive Behavior Therapy, having found all of the studies supporting those treatments to be of either "low" or "very low" quality. This is a very big deal, as it repudiates the idea, long pushed by a school of British psychiatry, that ME/CFS is caused by dysfunctional illness beliefs and irrational exercise avoidance, in favor of the biomedical model already adopted in the U.S. by the NIH, CDC, and other research and medical centers.
My friend and coauthor Brian Hughes, of the National University of Ireland, Galway, explains the significance of the new NICE guideline -- including its relevance to research on Long COVID -- in a ten-part post on his blog The Science Bit, which he has graciously allowed me to copy below. I will be publishing my own observations later this week, in a column with David Tuller, once we have seen the final report.
The new NICE Guideline for ME/CFS: Ten Questions Answered
1. What’s going on?
This week, in the United Kingdom, the National Institute for Health and Care Excellence (NICE) is publishing a new guideline for the diagnosis and management of a set of conditions referred to as “myalgic encephalomyelitis (or encephalopathy)” or “chronic fatigue syndrome” (ME/CFS). “ME/CFS” is a broad acronym that is often used to refer to many conditions. It has been estimated that between 0.5% and 1% of the population may be diagnosable with ME/CFS, equating to more than 300,000 people in the UK. The new guideline is to be published on 18 August.
2. How is the new guideline different to the old one?
The most significant differences relate to treatment recommendations. The old guideline, published back in 2007, had suggested that ME/CFS could be treated using a combination of cognitive behavioural therapy (CBT) and graded exercise therapy (GET). Essentially, the old UK guideline approached ME/CFS as if it were a psychological illness. By contrast, the World Health Organization defines ME/CFS as a neurological disease, listing it within the neurological disorders section of ICD-10, its illness classification system.
Based on the contents of the draft published last November, we now know that the new guideline moves firmly away from the old UK view. The new guideline states that neither GET nor CBT should be used as treatments for ME/CFS, and that clinicians should only consider CBT as a psychotherapy for patients who are in distress and who seek psychological support. In the new guideline, NICE has thoroughly revised the formal treatment standards for ME/CFS. It has done so based on a review of the relevant research, most of which was conducted after 2007.
3. Why is the new guideline being welcomed?
The new guideline is being welcomed by clinical experts, research scientists, and patient advocacy groups around the world.
The UK has been an outlier in treatment standards for ME/CFS. ME was first classified as a neurological disease by the World Health Organization back in 1969. In the United States, the relevant National Academy defines ME/CFS as a physiological condition requiring physiological (not behavioural) treatment. The health council in Belgium has concluded that CBT and GET are no longer supported by evidence, while that in the Netherlands has questioned whether many patients could benefit from CBT.
The scientific community has long come to view ME/CFS as a physical disease and not a psychiatric one, for which CBT and GET are likely to be ineffective treatments. While the exact physiology of ME/CFS remains unclear, it is the target of intensive medical research around the world.
Many patient groups have drawn attention to the ineffectiveness of CBT and GET as treatments. In particular, GET has been widely reported by patients as causing further damage to their health. However, because NICE had previously listed CBT and GET as approved treatments, ME/CFS patients in Britain were often unable to challenge clinicians who insisted these treatments be used. Patient advocacy groups have been vocal for decades on this issue, but have often found their views dismissed. Based on their objection to the old NICE guideline, ME/CFS patients have frequently been depicted in the wider media as contrarians, malingerers, or irrational malcontents.
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