Are Physicians Holding On to an Outdated Belief About Chronic Fatigue Syndrome?

According to a recent article in The Faculty Lounge, the opinion of its co-authors is that the long-held belief about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is seriously outdated. ME/CFS is a complex and disabling disease. It is difficult to diagnose, often engulfing patients with overwhelming fatigue.

The authors accuse some British physicians of attempting to protect their reputations by using the Sunk Cost Fallacy of sticking to their previous decisions because of the time and effort already invested.

Is this a wise decision? Especially when espousing “do no harm”?

A Proposed Change to a Change

By 2015 the National Academy of Medicine, formerly the US Institute, changed the definition of CFS from a psychological condition to a complex multisystem disease. In addition, the U.S. Centers for Disease Control (CDC) also dropped cognitive behavioral therapy (CBT), graded exercise therapy (GET), and other interventions patients reported as harmful.

However, just as the U.K. appeared to agree with U.S. decisions, the U.K.’s National Institute for Health and Care Excellence (NICE) halted revisions to the 2007 guidelines endorsing GET and CBT. About the same time, a group of U.K. psychiatrists came forward insisting that ME/CFS are in fact the result of dysfunctional beliefs about illness. Therefore, just as the new guidelines were due for publication, the physicians’ strongly-worded objections prevailed.

An Interesting Concept

Alastair Miller, M.D., a former specialist in infectious diseases, commented that there have not been any new therapies approved since 2007. He, therefore, questioned whether a requirement for new guidelines was even necessary.

The authors offer Dr. Miller an option. The option is if a therapy such as GET has proven harmful, it should be halted even if there is nothing else to offer.

On the subject of CBT, the authors disagree with many physicians. They consider CBT not necessarily dangerous, but useless. The authors suggest that developing new therapies was discouraged due to the overwhelming reception given to CBT that precluded motivation for new research.

This attitude appears to be changing and would be considerably advanced by the NICE revisions if published.

Are They Mere Holdouts or Dedicated Supporters

Additional support for GET came from Andrew Goddard, M.D., the president of the Royal College of Physicians. Dr. Goddard made it clear that although there is some risk, GET is strongly supported in connection with ME/CFS.

But the authors remind Dr. Goddard that actual data prevails over clinical observations. That many controlled trials and studies are conducted for the specific purpose of collecting data. Professor Brian Hughes, a co-author of this article commented on the confidence every clinician has in his or her own judgment. He sincerely believes that is the root of the problem.

Yet the potential harm associated with GET is not listed in NICE’s 2007 guideline, which the authors feel is sufficient for its recission. A 356-page evaluation accompanies the proposed NICE revision of all clinical studies supporting GET or CBT.

According to the authors, most were judged as ‘very low quality’ with some simply listed as ‘low quality.’ Readers are left to make their own informed decisions.

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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