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ME/CFS and Long COVID Recovery Behaviour: Comparison
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Please note this is a comparison between Version 4 by Bruce Ren and Version 5 by Bruce Ren.

Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS) or 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), now known as the National Academy of Medicine, and the Dutch Health Council.

  • CFS
  • chronic fatigue syndrome
  • eminence-based medicine
  • evidence-based medicine
  • insurance medicine
  • long COVID
  • ME
  • occupational medicine
  • post-infectious disease
  • recovery behaviour

1. Introduction

Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS) or 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), now known as the National Academy of Medicine [1], and the Dutch Health Council [2]. 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]. Other common symptoms include muscle pain, loss of muscle power, cognitive problems, reversal of the sleep rhythm and other sleep disturbances, dizziness, tinnitus, new-onset severe headaches, hypersensitivity to light and/or sound, and orthostatic intolerance [6]. Mild disease is defined by an approximate 50% reduction in functioning compared to pre-illness [7]. ME/CFS is associated with marked disability, reduced participation in social activities, long-term sickness absence, social isolation, and unemployment [8]. The American Centers for Disease Control and Prevention (CDC) reported that as many as 75% of patients (mean illness duration 14.3 years) were not working in a multicentre assessment study (n = 471) due to their ME/CFS [9], and less than a third of patients are estimated to resume employment within three years after diagnosis, as found by a systematic review [10]. Men, 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].
However, most doctors think that ME/CFS is a psychosomatic illness. This view has been shaped by Surawy’s et al. cognitive behavioural (CB) model from 1995 and a similar model by Vercoulen et al. from 1998. According to these models, patients’ illness beliefs, coping strategies, and other behavioural factors are key factors in both the onset and perpetuation of the condition [12][13]. Patients avoid exercise to reduce their symptoms, but as a result, they become deconditioned. This results in chronic disability and the false belief that one has an ongoing, incurable illness. Cognitive behavioural therapy (CBT) tackles the illness-related cognitions and behaviours that work to maintain and perpetuate symptoms. Graded exercise therapy (GET) is used to improve the levels of physical activity and conditioning of the patient. On top of that, the graded exposure tackles the view that exercise and overexertion are feared stimuli. Ultimately, the aim of CBT and GET for ME/CFS is recovery from symptoms [14]. This has led to the predominant recommendation of CBT and GET as effective treatments. However, reviews by Song and Jason in 2005 [15] and Sunnquist and Jason in 2018 [16] showed that, if patients are selected who fulfil more stringent case definitions, so that ME/CFS patients are selected instead of those with a fatiguing psychiatric illness, then they do not possess the behavioural characteristics targeted by the CB model. Also, Geraghty et al. [17] concluded that “the CBM [CB model] is not fit for purpose, as it poorly reflects the accounts given by patients and it ignores the wealth of evidence showing biological, immune and neurological dysfunction in ME/CFS”. As noted by the developers of the model themselves [12], “the observations [upon which the model is based] have been made during treatment [of 100 patients] and require confirmation by objective measurement techniques”. Although this was written in 1995, this objective evidence has so far not been presented.
According to an influential systematic review by Cairns and Hotopf [10], only 5% of adult ME/CFS patients recover spontaneously, and patients should not be medically retired until they have been treated with CBT and GET first. Many CBT and GET studies have been published in recent years, partly as a result of this advice.
During a lecture on chronic fatigue complaints after infections [18], psychologist professor Knoop, who is one of the leading proponents of CBT for ME/CFS, gave a presentation on ME/CFS in which, as in some of his publications [19][20], he indicated that CBT is an effective therapy. The IOM, on the other hand, concluded that there is no effective therapy for this disease [1].
Until recently, Cochrane reviews and medical guidelines in many countries have recommended both treatments as effective treatments. There are several anecdotal stories from patients on the internet who have been ‘forced’ by medical professionals to undergo these treatments as a requirement to be eligible for illness benefits. This is, in part, based on the aforementioned review by Cairns and Hotopf [10], which recommended that “medical retirement should be postponed until a trial of such treatment [CBT and GET] has been given”.
If patients want to be eligible for illness benefits, then in many Western countries, there are also obligations for patients. For example, in the Netherlands, insured people have several obligations to prevent entitlement to benefits and to increase the possibilities for returning to work according to the Dutch Work and Income Capacity Act (WIA) [21]. According to the WIA, one of the obligations is that an insured person should be “treated medically or follow instructions from a doctor… and not impede his healing”. An insured person is also obliged to “undergo adequate treatment for his illness or defect by general medical standards”.

2. Recovery Effect of Patients with ME/CFS

Up to 75% of ME/CFS patients are too ill to work [1]. Many patients from around the world have been treated with CBT and GET as a requirement for being eligible for illness benefits and medical retirement because of an influential systematic review from 2005 that concluded that medical retirement should be postponed until patients have tried CBT and GET [10]. Here, the researchers 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 [22]. One of the studies in the researchers analysis was Prins et al. (n = 278) [23]. According to the actometer results of this study—which were not published until 9 years later—CBT does not lead to objective improvement [20]. In addition, after 8 and 14 months of follow-up, there was no statistically significant difference in the number of hours worked between those who received CBT and those who received no treatment. In the PACE trial (n = 641) by White et al. [24], the number of patients receiving incapacity benefits increased after treatment with CBT and GET [25]. Analysis of the use of CBT in the Netherlands [22], as well as evaluation of the efficacy of CBT and GET in the official English and Belgian CFS clinics, showed that the number of people who could work decreased after treatment with CBT and GET [26][27]. Moreover, the Belgian evaluation, like the PACE trial, showed that neither therapy leads to objective fitness improvement in patients. This is not surprising when one considers that the sickness response, which is partly responsible for the manifestation of exertion intolerance or post-exertional malaise, the main characteristic of the disease, is part of the underlying mechanism that indicates a complex disruption with, among other things, disorders in aerobic cellular energy production [1][6]. Moreover, a large number of studies have provided objective evidence for the exertional intolerance, delayed muscle recovery, and other physical abnormalities in ME/CFS following exercise, which are not seen in healthy (sedentary) controls [28][29][30][31][32][33][34][35][36][37]. Unfortunately, the medical profession has not followed this research up to try to determine the underlying physiological reasons why patients respond abnormally to exercise and exertion. Instead, the researchers have been spending the majority of the researchers research money on doing yet another CBT and/or GET study. Consequently, the researchers can only speculate what might cause the exertion intolerance in ME/CFS. One possibility is that ME/CFS is caused by a chronic infection. A study by Shor [38] found that a substantial subgroup of ME/CFS patients in a Lyme endemic environment actually had a perpetuation of symptoms driven by a persistent but seronegative infection with Borrelia burgdorferi. Treatment with appropriately directed antimicrobials improved the outcomes. According to a number of reviews, another possibility is that persistent pathogens or reactivation of latent pathogens (for example herpes viruses) drive chronic symptoms in ME/CFS by interfering with host metabolism, gene expression, and immunity. Patients can have similar clusters of inflammatory symptoms because different human pathogens have evolved similar survival mechanisms to disable the host immune response and host metabolic pathways [3][39]. The exertion intolerance and other ME/CFS symptoms might also be caused by virally induced autoimmunity [38][39]. Interestingly enough, similar mechanisms are also thought to play a part in the development of long COVID [40][41][42]. This raises the question of whether it is ethical for medical professionals to try to convince patients that there is no underlying physical illness and that the patients are only suffering from abnormal cognitions and deconditioning. The therapist manual of the GETSET trial for example [43] states that “participants are encouraged to see symptoms as temporary and reversible, as a result of their current relative physical inactivity, and not as signs of progressive pathology”. According to the FINE trial [44], which treated the more severely affected patients at home [45], ME/CFS “is a good news diagnosis” and “exercise can reverse the condition” because “there is no disease”. It also raises the question as to whether it is ethical to treat patients with GET and force them to go over their limits, as objective evidence to support the notion that there is no underlying disease has never been presented. Patients, on the other hand, are convinced that they have a physical disease. Research findings over the last few decades have provided solid scientific insights that contradict the CB model and confirm that ME/CFS is a seriously debilitating, chronic, multisystem disease with many organic dysregulations, and not a psychiatric or psychosomatic one, as concluded by the American Institute of Medicine [1]. Stevelink et al. [46] concluded that “further research efforts should be directed into exploring the effectiveness of interventions to help CFS patients maintain their job or re-enter the work force when symptoms subside”. The researchers shows that CBT and GET are not the interventions patients, employers, and society need to achieve that. Continuing to use these therapies is an irresponsible choice because of the great risk of the aggravation of complaints and the cause of serious, and possibly even permanent, relapses. The researchers conclusions confirm the conclusions of the British National Institute for Health and Care Excellence (NICE), which recently published their updated ME/CFS guideline, in which they concluded that CBT and GET are not effective and do not lead to recovery [47] Furthermore, GET is harmful and should therefore not be used. Moreover, CBT as defined by Beck, should only be offered as a supplementary treatment if patients suffer from comorbid anxiety or depression. According to several reviews, a substantial number of patients are developing long COVID after an infection with COVID-19 [48][49][50][51]. According to NICE [52], this term includes ongoing symptomatic COVID-19, from 4 to 12 weeks post-infection, and post-COVID-19 syndrome, beyond 12 weeks post-infection. As noted by, for example, Dr. Anthony Fauci, Director of the National Institute of Allergy and Infectious Diseases in the United States [53], the symptoms experienced by those suffering from long COVID beyond 12 weeks, are very similar to those experienced by ME/CFS patients. Data from a large, international, web-based patient survey indicate that 75% of respondents with long COVID reported suffering from post-exertional symptom exacerbation, the main characteristic of ME/CFS [54]. Studies on CBT and GET for long COVID have not yet been published. However, here offers no support for their use for improving the recovery of patients with an ME/CFS-like illness post-infection with COVID-19 or to question their recovery behaviour.

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