Why Curative CBT Is Harmful To MECFS Patients. When Therapy Encourages Irrational Behavior
What is curative CBT?
Curative cognitive behavioral therapy is a form of psychotherapy that is very effective at treating and even curing formal thought disorders.
A formal thought disorder means that someone is having thoughts that are not rational and that cause them distress and poor functioning in their day-to-day lives. Common examples include depression and anxiety.
—-
How Does CBT Work?
Cognitive behavioral therapy works by identifying irrational thoughts, breaking them down based on common flaws in reasoning and evidence-based thinking, and then basing your behavior on a more evidence-based thought.
If you have a formal thought disorder, overtime practicing CBT aims to allow you to make better more evidence-based decisions and not base your self-worth or behavior on irrational thoughts caused by your mental health condition.
—-
CBT Example: Depression
Here is an example of how CBT should work in a formal thought disorder like depression.
Someone with depression might think
"Nobody cares about me so there is no point to going to my friend's birthday party."
CBT would:
1.) Identify what sorts of irrational thinking are occurring:
All or nothing thinking - "nobody" is probably inaccurate, you can think of someone who does care about you.
Jumping to conclusions - do you have any evidence that your friends don't care if you go?
2.) Ask you to create a thought based on evidence.
My friend invited me to the party so they probably want me to come.
3.) Base your behavior on this evidence-based though.
I will go to the party.
—-
Why Curative CBT Is Harmful To MECFS
Curative CBT assumes that a person's thoughts are irrational and driving them to incorrect behaviors.
When applied to MECFS the assumption is that the person's low functioning and lack of movement is due to and irrational fear of exercise.
This is harmful because
1.) MECFS patient's fear of exercise is rational
2.) Ignoring reservations about exercise is irrational
Indeed, a CBT therapist informed about MECFS as a biological condition would give the opposite advice as curative CBT for MECFS attempts to push.
—-
MECFS Patients Have A Rational Fear
Post-exertional malaise is the defining symptom of MECFS. It causes an exacerbation of fatigue, pain, dysautonomia and immunological symptoms following cognitive or physical exertion. Symptoms can last days, weeks, months or even cause permanent deteriorations in health and can leave patients bedbound and completely disabled from all activities of daily living.
To say someone with MECFS has an irrational fear of exercise is like saying someone with a peanut allergy has an irrational fear of peanuts.
MECFS is not a formal thought disorder. It is not a thought disorder at all. The patient's thoughts around pacing and avoiding severe symptoms brought about by exercise and exertion are rational, they are based in evidence and the patient's past experience.
—-
Unlearning Pacing Is Dangerous
Pacing is the recommended strategy for managing activity and post-exertional malaise (PEM) in MECFS.
Essential aspects of pacing include:
-Learning to listen to your body
-Heading symptoms as a sign of when to stop activity
-Limiting activity enough to prevent PEM
Curative CBT encourages doing the opposite of all of this.
The consequences of not pacing are not just the symptoms of PEM. Repeated episodes of PEM can lead to permanently decreased baseline in MECFS patients. In other words, a smaller window in which to pace without triggering PEM.
Many severe MECFS patients report that poor information about pacing lead to their becoming housebound or bedbound. Severe and very severe MECFS can be life-threatening. Patients rely on 24/7 caregiving, IV fluids & feeding tubes. They can develop mast cell activation and chemical sensitivity leading to intolerance of food and medications. Severe ME is described as living death.
In short: curative CBT does not just fail to cure MECFS it can permanently worsen the condition and in extreme cases contribute to death.
—-
The Permanent Harm of Formalized Gaslighting
Curative CBT assumes that the problem with someone with MECFS is not the symptoms they experience but the perception of those symptoms.
Therefore, it encourages ignoring, minimizing, pushing through and dissociating from your symptoms.
Even if someone with MECFS is finally educated on the fact that their symptoms are real, not their fault, and not curable by positive thinking, the harm of this gaslighting can persist.
If you have spent a long time learning to ignore and push through your symptoms it can be incredibly difficult to reconnect with your body and regain the ability to accurately perceive and communicate your symptoms.
This can pose a massive permanent obstacle to pacing well and to knowing if other treatments are helpful to you, jeopardizing legitimate recovery.
—-
It's Not The Therapy Modality That Harms It's The Beliefs It Perpetrates
It is important to remember that the CBT process of identifying distorted thinking patterns and learning to instinctively correct them is not what is problematic.
Rather it is the misidentification of the healthy survival response of MECFS patients as distorted thinking that makes curative CBT harmful.
Thus while CBT is often presented as bad and alternatives like Acceptance Commitment Therapy as good, this is not defacto true.
If ACT was used to try to convince some to accept and commit to the "fact" that their illness is made up this "curative ACT" would be just as harmful as curative CBT.
The most important part of supportive talk therapy for MECFS is not the therapy modality but rather a factual and nuanced understanding of the illness on the part of the therapist.
Therapy for MECFS should confirm patient's self-confidence, encourage connection to the body, and promote acceptance and gratitude for life within the bounds of safe pacing.
—-
CBT & MECFS Summarized
Cognitive Behavioral Therapy aka CBT is a talk therapy modality that aims to
-Identify distorted thinking patterns
-Promote rational thinking patterns
-Change behavior in line with ration thinking
It is very effective for treating formal thought disorders such as depression and anxiety.
However, MECFS is not a formal thought disorder.
Thus if CBT is used curatively in MECFS to present rational avoidance of post-exertional malaise as a distorted thinking pattern it becomes unhelpful and dangerous.
Curative CBT in MECFS
-Promotes irrational and dangerous exertion and activity
-Creates disconnect between patients and their bodies
-Can lead to permanent physical harm from repeated post-exertional malaise
-Can lead to permanent mental harm from gaslighting
Therapy for MECFS regardless of modality should promote
-Affirmation of the patient's experience
-Connection to the body
-Acceptance and gratitude for life within the bounds of safe pacing
—-
Curative CBT in the context of Myalgic Encephalomyelitis aka MECFS is formalized Medical Gaslighting.
⠀
Cognitive Behavioral Therapy is an effective type of psychotherapy that for correcting distorted thinking patterns in Formal Thought Disorders such as Depression and Anxiety.
⠀
But ME is not a formal thought disorder and thus CBT is not effective at treating it.
⠀
Curative CBT in ME is used to teach patients that their fear of exercise is irrational and they should not let their bodily symptoms stop them from activity.
⠀
The problem is that fear of exertion in ME is irrational the way fear of peanuts in severe allergy is irrational. Not at all.
⠀
Post Exertional Neuroimmune Exhaustion aka Post Exertional Malaise is the defining symptom of ME. It causes dozens of severe symptoms from migraine to nausea to paralysis is response to normal or minor levels of exertion.
⠀
PENE / PEM causes numerous metabolic, cardiac, immunological, and neurological changes not attributable to anxiety.
⠀
A CBT therapist who understands MECFS would never claim that their therapy could cure the illness. Furthermore rather than encouraging patients to push through symptoms they would encourage pacing the only activity management strategy for ME endorsed by the CDC, NICE, and Mayo Clinic.
⠀
Forcing patients to push through symptoms and suffer the consequences is not just cruel, it is dangerous. severe ME patients have some of the lowest quality of life on earth, suffer extreme pain, are unable to care for themselves, are housebound and often bedbound, and can even die from the consequences of malnutrition & neuroinflammation.
⠀
Curative CBT, or any curative talk therapy, cannot address the underlying biological causes of MECFS. The biopsychosocial model of "Chronic Fatigue Syndrome" is indefensible in light of mounting evidence of metabolite abnormalities, immunological and cardiac changes, microbiome changes, and neuroinflammation.
⠀
So let's keep CBT and therapy more generally treating the things it does best: formal thought disorders. Something ME / CFS is not.
