A debunked theory about [ME] chronic fatigue syndrome is being recycled to explain Long Covid—with troubling results.
By David Tuller
Summary
- A debunked theory used to explain ME/CFS is now being recycled to explain Long Covid, with troubling consequences for patients.
- ME/CFS was historically and incorrectly dismissed as psychological, especially by a group of UK-based experts
- These experts claimed the illness was due to “dysfunctional beliefs” and promoted: Graded Exercise Therapy (GET) & Cognitive Behavioural Therapy (CBT)
- 2015: U.S. Institute of Medicine (IOM) declared ME/CFS a serious, chronic, multi-system disease.
- 2017: U.S. CDC quietly dropped GET and CBT from its treatment guidelines.
- 2021: UK’s NICE recommended against GET and downgraded CBT to supportive—not curative—status due to “low” or “very low” evidence quality.
- Despite discrediting, the psychosomatic model is reemerging in Long Covid treatment strategies.
- Symptoms of Long Covid closely mirror ME/CFS: post-exertional malaise, cognitive dysfunction, disordered sleep, and orthostatic intolerance. The overlap suggests shared biological mechanisms.
- Hornig warns against repeating past mistakes.
- The urgent need is for rigorous science and humane treatment, not recycled psychological narratives.
Extracts
In April of 2020, physician-scientist Mady Hornig—then an associate professor at Columbia University—experienced an itchy throat, a swollen lymph node and a severely inflamed muscle radiating pain from deep in her ribcage. Three weeks after these initial symptoms, she developed a fever that persisted for two weeks.
But after Hornig recovered from the acute phase of illness, she continued to experience profound fatigue and could work only for short periods without resting.
“My doctor said, ‘Well, now we know that there must be some hidden unresolved stress or anxiety or problem,’ and I'm like, ‘No, I really don't think so,’” recalls Hornig, who is no stranger to reflexive psychological explanations for complex symptoms—especially in ME/CFS, which disproportionately affects women. Her doctor finally came around, acknowledging that her symptoms aligned with Long Covid rather than with anxiety or trauma.
Hornig's doctor was being informed by the old view that patients with ME/CFS were severely out-of-shape, or deconditioned, in many cases because of a past, acute viral illness that had forced them to remain sedentary. The illness lingered in patients' minds, these experts opined, in the form of “unhelpful” or “dysfunctional” beliefs about having, or continuing to have, an ongoing disease. In response, they recommended treatment focused on two interventions: a regimen of increasing activity called graded exercise therapy (GET) to address the purported deconditioning, and a specialized form of cognitive behavior therapy (CBT), designed to alleviate patients' allegedly misguided conviction that they were still sick.
That view of ME/CFS was ultimately abandoned by leading institutions setting the standard for medical care. Yet despite the update, old ways of thinking are still being applied to patients like Hornig, who report long-lasting, often debilitating effects from Covid infection, stirring controversy again.
If a doctor who has known me for a long time could suggest that post-Covid tachycardia and other symptoms likely reflected some deep-seated unconscious neuroses, then how would anyone without a medical background manage to be properly heard and guided through this?
Mady Hornig
This time, patients and researchers like Hornig are determined not to let history repeat itself unchallenged.
MEA Comment
It is baffling why some influential clinicians and researchers are promoting a management programme for people with Long Covid that is based on the now discredited theory that ME/CFS is perpetuated by abnormal illness beliefs and behaviours and activity avoidance.
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS
