Is It Useful to Question the Recovery Behaviour of Patients with ME/CFS or Long COVID?

Mark Vink,Friso Vink-Niese

doi:10.3390/healthcare10020392

Mark Vink, Friso Vink-Niese

Open Access

https://doi.org/10.3390/healthcare10020392

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Journal: Healthcare	Publication Date: Feb 18, 2022
Citations: 14	License type: CC BY 4.0

Affiliation: Osnabrück University

Abstract

For the last few decades, medical guidelines have recommended treating patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) with graded exercise therapy (GET) and cognitive behavioural therapy (CBT). Moreover, doctors have questioned the recovery behaviour of these patients and stimulated them to follow these treatments so that they would be able to go back to work. In this article, we reviewed trials of GET and CBT for ME/CFS that reported on work status before and after treatment to answer the question of whether doctors should continue to question the recovery behaviour of patients with ME/CFS. Our review shows that more patients are unable to work after treatment than before treatment with CBT and GET. It also highlights the fact that both treatments are unsafe for patients with ME/CFS. Therefore, questioning the recovery behaviour of patients with ME/CFS is pointless. This confirms the conclusion from the British National Institute for Health and Care Excellence (NICE), which has recently published its updated ME/CFS guideline and concluded that CBT and GET are not effective and do not lead to recovery. Studies on CBT and GET for long COVID have not yet been published. However, this review offers no support for their use in improving the recovery of patients with an ME/CFS-like illness after infection with COVID-19, nor does it lend any support to the practice of questioning the recovery behaviour of these patients.

Highlights

Myalgic encephalomyelitis (ME), known as chronic fatigue syndrome (CFS) or myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), is a seriously debilitating chronic multisystem disease, and not a psychiatric or psychosomatic one, according to the prestigious American Institute of Medicine (IOM), known as the National Academy of Medicine [1], and the Dutch Health Council [2]
Healthcare 2022, 10, 392 confirmed this conclusion and have highlighted the fact that cognitive behavioural therapy (CBT) and graded exercise therapy (GET) do not lead to objective improvement and that the claim that they lead to recovery in around 20% of patients is incorrect [11,22,23,24,25]
We analysed the work outcomes of 3721 patients who were treated with CBT and/or GET to determine whether it makes sense to question the recovery behaviour of ME/CFS patients, as the president of the Dutch Society for Insurance Physicians said that insurance doctors should do that to reduce the number of ME/CFS patients who are unable to work and are receiving disability benefits [26]

Summary

Introduction

ME/CFS is a disease of unclear origins which often follows a viral or infectious illness [3,4] It is characterised by delayed muscle recovery after trivial exertion [5], or exertion intolerance, which is currently often referred to as post-exertional malaise (PEM) [1]. This is an unusual, debilitating response to a low level of physical or mental exertion which previously did not cause any problems, and which substantially limits the functioning and quality of life of patients [1,2]. People in older age groups, and those who have been ill for longer periods of time are more likely to have ceased employment due to their illness [11]

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