Why GET & CBT Are Harmful To MECFS Patients
How The Biopsychosocial (BPS) Model derailed MECFS Treatment
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What Is the BPS Model of MECFS?
The biopsychosocial model of CFS is a DISPROVEN theory that MECFS is an "illness without disease." In other words, there is no underlying biological cause of myalgic encephalomyelitis and the symptoms are instead a "chronic fatigue syndrome" caused by psychological and social (lifestyle) factors that then go on to lead to biological consequences.
The underlying cause of CFS according to the BPS model is deconditioning driven by depression and irrational anxiety around exercise. While a viral illness or physical trauma may trigger MECFS, the model theorizes that there are no permanent consequences of such triggers.
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Treatments Proposed by BPS
Treatment proposed by the biopsychosocial model (now proven ineffective & harmful) falls into two categories.
1.) Physical Health: Graded Excercise Therapy
The BPS model believes that physical symptoms of MECFS are caused by deconditioning (loss of health caused by lack of movement.) It describes CFS as a vicious cycle where lack of movement causes pain and symptoms that cause lack of movement.
Thus the proposed therapy is graded exercise. Slowly increasing movement and pushing through symptoms to undo the effects of the theorized deconditioning.
2.) Mental Health: Cognitive Behavioral Therapy
Mental health is believed by BPS to be the large driver of CFS. It proposes that an irrational fear of exercise and exertion as well as depression is the reason patients are unable to recover from deconditioning. As with physical health, it describes a cycle where anxiety and depression leads to avoidance of activities that in turn causes poor mental health.
Thus the proposed therapy CBT aims to help patients "unlearn" these "harmful" thoughts by convincing them their fear of exercise is ungrounded and they are only avoiding activities because of irrational depression & anxiety.
Both GET & CBT are well-established therapies for deconditioning, depression, and anxiety. If MECFS were caused by these conditions they would work. But they do not.
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Evidence On GET & CBT
GET & CBT were initially supported by some governments on the basis of the PACE trial a large scale trial that compared GET, GET & CBT, and pacing.
However, later analysis showed this trial to be massively flawed and it was revoked from publication. In order to produce a positive result the authors were forced to change the criteria for recovery. Patients who "successfully" completed GET had 6 minute walk test results comperable to heart failure patients.
A 2019 survey commissioned by NICE of over 2,000 patients found that when offered GET & CBT together physical and mental health deteriorated by 75% and 62% respectively. GET, CBT or GET & CBT all roughly doubled the rate of severe ME.
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Why MECFS Advocates Oppose The BPS Model
The biopsychosocial model is refuted by MECFS advocates because the treatments it proposes: GET & CBT have been proven ineffective.
Additionally, it does not reflect the biological evidence of dysfunction in MECFS that begins before psychosocial factors. Nor does it align with patient's testimony about the disease.
MECFS advocates would love if there was no biological dysfunction preventing recovery. But patient experience, clinical evidence, and the BPS proponent's own trial all demonstrate that this is not the case.
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Evidence Of Underlying Biological Dysfunction in MECFS
There are numerous pieces of evidence that show that the physical markers of MECFS are not due to deconditioning including (but not limited to)
2 Day CPET results that show additional reduction in cardiovascular functioning and oxygen utilization on the second day of testing (1). This is due to post-exertional malaise (PEM) and not present in any other disease or deconditioned patients. Specific immune abnormalities are also measurable only during PEM (4).
Tilt-table test results that show a reduction in blood flow to the brain. These results occur regardless of and not in coordination with the patient's level of movement thus they are not attributable to deconditioning (2).
Widespread evidence of neuroinflammation aka inflammation of the brain (3).
Metabolite abnormalities showing disrupted ATP production (5).
Sources:
(1)https://doi.org/10.2522/ptj.20110368
(2)https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8097965/
(3)https://doi.org/10.2967/jnumed.113.131045
(4)https://pubmed.ncbi.nlm.nih.gov/24974723/
(5)https://pubmed.ncbi.nlm.nih.gov/35043127/
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How GET & CBT Harm
By working from a model that presumes there is not underlying pathology to MECFS, both GET & CBT encourage patients to ignore their bodies and push through their symptoms.
GET involved consistent increases in exercise regardless of how one feels. Even if the initial level of exercise is not enough to trigger post-exertional malaise, it will increase to the point where it does.
Repeated episodes of PEM can cause permanent deterioration of MECFS, an incurable condition. Deconditioning, even if present, is reversible. MECFS is not.
CBT is an effective therapy for getting rid of thoughts. But when it is used to frame thoughts registering and accommodating symptoms and learning to listen to your body as disordered it is simply gaslighting formalized.
CBT is the tool that allows patients to be pushed far beyond what their sensibilities would allow in GET. The process of having your rational thoughts delegitimized can also lead to complex trauma and take years or decades to unlearn.
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The BPS Model Only Works If Patient Testimony Is Ignored
Patients with MECFS will immediately tell you upon taking a history that their avoidance of exertion is a behavior they adopted with extreme reluctance only because of the obvious pattern of post-exertional symptoms.
They will also generally express a strong desire for recovery and a passionate interest in returning to the activities they have been forced to give up. Quite contrary to someone with depression.
Their physical symptoms may reflect deconditioning and depression, but their testimony will not.
The only way for doctors to believe the BPS model of MECFS is if they believe their patients are mentally ill and/or lying. This means doctors who believe the BPS model must by default gaslight their patients.
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Why The BPS Model Is So Dangerous
The biopsychosocial model is so dangerous because while the theory goes against patient experience, patients desperately wish it were true.
If the BPS model were true, there would be nothing stopping us from recovering. No underlying biological dysfunction we couldn't overcome. Just some distorted thinking and deconditioning, both easily treatable with well-established therapies.
The most painful and distressing part of MECFS is post-exertional malaise and the pacing required to prevent it. Pacing is rationing your life. It is the hardest thing any MECFS patient must accomplish. To be told that it is in fact beneficial to ignore and throw out is what we desperately want to hear.
The BPS model offers an alternative to listening to our bodies. It offers authority figures telling us exactly what we want to hear. But post-exertional malaise is not just an awful symptom, it is our body's warning light and self-protection. To ignore it is dangerously perilous.
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The Takeaway
The biopsychosocial (BPS) model of MECFS is a disproven theory that suggested that myalgic encephalomyelitis which was retermed "chronic fatigue syndrome" is not caused by any underlying biological dysfunction but rather deconditioning, depression, and anxiety.
The BPS model theorized that graded exercise therapy (GET) to treat deconditioning and cognitive behavioral therapy (CBT) to treat depression and anxiety could cure CFS.
The BPS model is proven wrong because
1.) GET & CBT do not cure MECFS and in fact have been shown to be harmful.
2.) We have found evidence of biological dysfunction in MECFS inexplicable by deconditioning
3.) It is inconsistent with patient testimony and case history
The BPS model is dangerous because patients desperately want to believe there is not an underlying biological reason they cannot recover. The BPS model gives patients permission to ignore their body's warning signs and continue the activities they love. But doing so can lead to permanent worsening of their disease.
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Ever wonder how ME research got so behind? The Biopsychosocial or BPS model of ChronicFatigueSyndrome (properly termed Myalgic Encephalomyelitis aka MECFS) has produced ineffectual and harmful treatments of Graded Excercise Theory or GET and curative Cognitive Behavioral Therapy or CBT. This model completely derailed biological research into the disease and sent science back by 4 decades.
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The biopsychosocial model of CFS is a disproven theory that MECFS is an "illness without disease." That the symptoms of ME are due only to depression and deconditioning.
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However:
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GET & CBT do not cure MECFS and in fact have been shown to be harmful,
we have found evidence of biological dysfunction in MECFS inexplicable by deconditioning, and the model is inconsistent with patient testimony and case history.
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Post Exertional Malaise or more descriptively
Post Exertional NeuroimmuneExhaustion is a unique biological phenomenon not present in deconditioning or depression.
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Additionally, studies show:
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2 Day CPET results showing additional reduction in cardiovascular functioning and oxygen utilization during PEM (1).
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Tilt-table test results showing a reduction in blood flow to the brain not attributable to deconditioning (2).
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Widespread evidence of neuroinflammation aka inflammation of the brain (3).
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Specific immune abnormalities measurable only during PEM (4).
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Metabolite abnormalities showing disrupted ATP production (5).
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And more. (See comments for citations)
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It would be amazing if we lived in a world where the BPS model was true and everyone with MECFS could recover.
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But we do not.
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And denying that reality can lead to permanent worsening of the disease from repeated episodes of post-exertional malaise.
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At its best, the BPS model is an incorrect theory. At its worst is institutionalized medical gaslighting labeling women with ME and long covid with hysteria.
