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[The text at the link is one long paragraph which is difficult to read. I have thus added in some paragraph breaks but they are not official ones]
https://www.frontiersin.org/journals/human-neuroscience/articles/10.3389/fnhum.2025.1495050/abstract
The cognitive behavioral model (CBmodel) (1,2) has dominated the world of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since the 1990s. According to this model, a belief in an organic illness, known as dysfunctional beliefs, stops ME/CFS patients engaging in normal activities, resulting in avoidance behavior and deconditioning. The deconditioning then leads to further avoidance behavior and more deconditioning. According to the CBmodel, symptoms of ME/CFS are caused by deconditioning and not by an underlying illness. Cognitive behavioral therapy with graded activity (CBTplus) and graded exercise therapy (GET) were designed to reverse the dysfunctional beliefs, the avoidance behavior and the deconditioning and lead to recovery.
As many runners know, if you are a beginner and you start exercising three times a week, you can run half a marathon in 12 weeks. In a healthy sedentary person who doesn't do physical exercise or work, that will take around 12 to 24 weeks (3). Let's keep that in mind and have a look at the largest CBTplus and GET trial for ME/CFS, the PACE trial (n=641) (4), and its GET group, in particular. The 160 participants in that group were exercising five days a week for up to 30 minutes per day for 24 weeks. If there would be no underlying disease, and patients were merely deconditioned, then such an exercise regime would lead to a very substantial improvement in fitness. However, fitness did not improve (5). The same thing was seen in the CBTplus group. Consequently, an underlying disease, i.e. ME/CFS, was preventing that. It also means that patients were already exercising at their maximum when they joined the study, which disproves the assumption that patients were exercising less than they could due to dysfunctional beliefs.
Three Dutch studies (6)(7)(8) showed the following: eight months of CBTplus in adults, five months of CBTplus in adolescents and at least 16 weeks of guided self-instructions in adults, based on CBTplus, did not lead to an objective improvement of activity (actometer) (9).
A 12-week programme of GET (10), an 18-week programme combining CBTplus and GET in the more severely affected (11) and the evaluation of the efficacy of CBTplus and GET in the Belgium reference centers (12) showed no objective improvement in fitness, according to VO2peak, a timed step test, which "strongly and reliably predicts the maximal aerobic capacity VO2max" (p. ( 13)) and VO2peak or VO2max, respectively. This is not only important for ME/CFS patients, but also for those with long Covid because not only do around 60% of them fulfill ME/CFS criteria (14,15). But also, because there are at least 400 million people with long Covid according to a conservative estimate (16).
Moreover, the ReCOVer study, based on the CBmodel, found that 16 weeks of CBTplus did not lead to an objective improvement of activity (actometer) in long Covid either (17,18).In all those studies, one would have expected a (very) substantial increase in activity/fitness but this didn't happen because an underlying illness was preventing that, just like what was found by the PACE trial. Consequently, all those studies proved that ME/CFS is a physical disease and that ME/CFS patients do not suffer from dysfunctional beliefs. The ReCOVer study proved the same in long Covid.
Some people might say, but that is simply down to the fact that patients were not motivated to follow those treatments and they simply did not adhere to them. However, the above mentioned studies concluded that their treatments were effective and that implies that patients adhered to treatment. If they had not adhered to treatment, then those studies would have concluded, we cannot conclude anything about the efficacy of our treatments because patients did not adhere to it. Or, that patients did not adhere to the treatment because it was not effective and / or patients were negatively affected by it. Moreover, the aforementioned PACE trial (4) found high rates of acceptance of the treatments and of participants satisfaction; 87% (CBTplus) and 85% (GET) of participants were adequately treated, the adherence to the manual by competent therapists was very good (CBTplus) and excellent (GET), and the dropout rate was low (11%, CBTplus and 6%, GET).Additionally, the aforementioned Belgium evaluation (n=655) (12) concluded that patients had on average 41 to 62 hours of CBTplus and GET, spread over 6 to 8 months. The dropout rate was very low (only 2.8%) because patients were "generally speaking…very motivated to follow the therapy" (p. 80 ( 12)).
The remaining question then is, why is no one aware of that? Or to put it differently, why did none of these studies report the above mentioned discovery? The first possible answer is because the studies were conducted by researchers who have originated and / or devoted their career to the CBmodel and the efficacy of CBTplus and / or GET for ME/CFS. As noted by Ioannidis, "investigators working in any field are likely to resist accepting that the whole field in which they have spent their careers is a 'null field.'" (p. 0700, 19).
The second possible answer is that the studies were conducted by mainly mental health experts who are not experts in exercise physiology. Consequently, they did not see what their own results showed. In a similar manner that most of us would have thrown away the mold overgrown petri dish in the research by Dr Alexander Fleming that led to the discovery of penicillin (20). It needed someone like him to understand the meaning of it.CBT and graded exercise therapy studies have proven that ME/CFS and long Covid are physical diseases. Yet no one is aware of that because many of the researchers involved in the studies have built their careers on the CBmodel and they resist accepting the true meaning of the objective outcomes of their studies because that would invalidate their model. Alternatively, the studies did not report that because most of the researchers involved are mental health experts instead of experts in exercise physiology.
Keywords: cbt, chronic fatigue syndrome, CFS, cognitive behavioural therapy, COVID-19, Long Covid, ME, ME/CFS
Received: 12 Sep 2024; Accepted: 13 Jan 2025.
https://www.frontiersin.org/journals/human-neuroscience/articles/10.3389/fnhum.2025.1495050/abstract
OPINION article
Front. Hum. Neurosci.
Sec. Brain Health and Clinical Neuroscience
Volume 19 - 2025 | doi: 10.3389/fnhum.2025.1495050
This article is part of the Research Topic Shedding Light on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) View all 5 articles
CBT and graded exercise therapy studies have proven that ME/CFS and long Covid are physical diseases, yet no one is aware of that
Provisionally accepted
Mark Vink 1*
Alexandra Vink-Niese 2
The final, formatted version of the article will be published soon.
- 1 Self employed, Amsterdam, Netherlands
- 2 Other
The cognitive behavioral model (CBmodel) (1,2) has dominated the world of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since the 1990s. According to this model, a belief in an organic illness, known as dysfunctional beliefs, stops ME/CFS patients engaging in normal activities, resulting in avoidance behavior and deconditioning. The deconditioning then leads to further avoidance behavior and more deconditioning. According to the CBmodel, symptoms of ME/CFS are caused by deconditioning and not by an underlying illness. Cognitive behavioral therapy with graded activity (CBTplus) and graded exercise therapy (GET) were designed to reverse the dysfunctional beliefs, the avoidance behavior and the deconditioning and lead to recovery.
As many runners know, if you are a beginner and you start exercising three times a week, you can run half a marathon in 12 weeks. In a healthy sedentary person who doesn't do physical exercise or work, that will take around 12 to 24 weeks (3). Let's keep that in mind and have a look at the largest CBTplus and GET trial for ME/CFS, the PACE trial (n=641) (4), and its GET group, in particular. The 160 participants in that group were exercising five days a week for up to 30 minutes per day for 24 weeks. If there would be no underlying disease, and patients were merely deconditioned, then such an exercise regime would lead to a very substantial improvement in fitness. However, fitness did not improve (5). The same thing was seen in the CBTplus group. Consequently, an underlying disease, i.e. ME/CFS, was preventing that. It also means that patients were already exercising at their maximum when they joined the study, which disproves the assumption that patients were exercising less than they could due to dysfunctional beliefs.
Three Dutch studies (6)(7)(8) showed the following: eight months of CBTplus in adults, five months of CBTplus in adolescents and at least 16 weeks of guided self-instructions in adults, based on CBTplus, did not lead to an objective improvement of activity (actometer) (9).
A 12-week programme of GET (10), an 18-week programme combining CBTplus and GET in the more severely affected (11) and the evaluation of the efficacy of CBTplus and GET in the Belgium reference centers (12) showed no objective improvement in fitness, according to VO2peak, a timed step test, which "strongly and reliably predicts the maximal aerobic capacity VO2max" (p. ( 13)) and VO2peak or VO2max, respectively. This is not only important for ME/CFS patients, but also for those with long Covid because not only do around 60% of them fulfill ME/CFS criteria (14,15). But also, because there are at least 400 million people with long Covid according to a conservative estimate (16).
Moreover, the ReCOVer study, based on the CBmodel, found that 16 weeks of CBTplus did not lead to an objective improvement of activity (actometer) in long Covid either (17,18).In all those studies, one would have expected a (very) substantial increase in activity/fitness but this didn't happen because an underlying illness was preventing that, just like what was found by the PACE trial. Consequently, all those studies proved that ME/CFS is a physical disease and that ME/CFS patients do not suffer from dysfunctional beliefs. The ReCOVer study proved the same in long Covid.
Some people might say, but that is simply down to the fact that patients were not motivated to follow those treatments and they simply did not adhere to them. However, the above mentioned studies concluded that their treatments were effective and that implies that patients adhered to treatment. If they had not adhered to treatment, then those studies would have concluded, we cannot conclude anything about the efficacy of our treatments because patients did not adhere to it. Or, that patients did not adhere to the treatment because it was not effective and / or patients were negatively affected by it. Moreover, the aforementioned PACE trial (4) found high rates of acceptance of the treatments and of participants satisfaction; 87% (CBTplus) and 85% (GET) of participants were adequately treated, the adherence to the manual by competent therapists was very good (CBTplus) and excellent (GET), and the dropout rate was low (11%, CBTplus and 6%, GET).Additionally, the aforementioned Belgium evaluation (n=655) (12) concluded that patients had on average 41 to 62 hours of CBTplus and GET, spread over 6 to 8 months. The dropout rate was very low (only 2.8%) because patients were "generally speaking…very motivated to follow the therapy" (p. 80 ( 12)).
The remaining question then is, why is no one aware of that? Or to put it differently, why did none of these studies report the above mentioned discovery? The first possible answer is because the studies were conducted by researchers who have originated and / or devoted their career to the CBmodel and the efficacy of CBTplus and / or GET for ME/CFS. As noted by Ioannidis, "investigators working in any field are likely to resist accepting that the whole field in which they have spent their careers is a 'null field.'" (p. 0700, 19).
The second possible answer is that the studies were conducted by mainly mental health experts who are not experts in exercise physiology. Consequently, they did not see what their own results showed. In a similar manner that most of us would have thrown away the mold overgrown petri dish in the research by Dr Alexander Fleming that led to the discovery of penicillin (20). It needed someone like him to understand the meaning of it.CBT and graded exercise therapy studies have proven that ME/CFS and long Covid are physical diseases. Yet no one is aware of that because many of the researchers involved in the studies have built their careers on the CBmodel and they resist accepting the true meaning of the objective outcomes of their studies because that would invalidate their model. Alternatively, the studies did not report that because most of the researchers involved are mental health experts instead of experts in exercise physiology.
Keywords: cbt, chronic fatigue syndrome, CFS, cognitive behavioural therapy, COVID-19, Long Covid, ME, ME/CFS
Received: 12 Sep 2024; Accepted: 13 Jan 2025.
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