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I agree we shouldn’t dismiss brain retraining—some people do benefit/there is a there there. @julierehmeyer explains the dangers of extrapolating from individual “success stories” and what is pernicious about programs (or patients) that sell their solutions as a cure-all. https://twitter.com/julierehmeyer/status/1354996563563728897
There is a dark underbelly very closely tied to functional or psychological explanations of neurological disease. A deep well of abuse, coercion, neglect, and preventable disability and death that is inextricably linked to CBT, GET, et al. https://twitter.com/julierehmeyer/status/1354996953688510470?s=20
For “brain retraining” to be integrated into our community as a “normal” modality (e.g., for calming ANS dysfunction, decreasing hypersensitivities, improving motor function), as one possible tool among many, it has to deal directly with this “darkness.”
And grasp the limits of what it is offering and why it absolutely will not help (let alone “cure”) all patients, and may even harm some.
I did try one of these programs, one of the ones Julie describes, that tries to get you to train yourself not to pay attention to “bodily signals of distress.” It worked! I ignored my body. I felt pretty great. And then I crashed...hard.
The harm wasn’t epic, but I can only imagine what might have happened if I had a) cut myself off from the patient community and so had access to *less* information than I did and b) if I had a coach encourage me to do it again.
There was nothing wrong with my amygdala. Unless and until NLP can detether a spinal cord or regenerate tissue, it was never going to be the right intervention for me. And yet there seems to be a really strong culture among some of these groups of going out and...prostelytizing.
There is nothing wrong with sharing what worked for you (I certainly have) but I have been very clear from the get-go that not everyone with ME shares my pathologies and even those that do may not have the same outcomes as I did, if they undergo the same treatments.
And so programs, clinicians, researchers, orgs orbiting these and adjacent spaces must take responsibility for reducing misdiagnosis and improving differential diagnosis, must take a firm stance against corecion (whether by the state or unethical business practices)...
And must circumscribe the claims they make. I believe patients when they say they get better. The problem is extrapolating from one case to the many without any way to know what the underlying problem was or why patients got better (although theories certainly abound).
We should all disavow any programs that engage in pressure tactics, require patients to cut themselves off from their communities, or make extraordinary claims. As Julie says, this is completely unnecessary. https://twitter.com/julierehmeyer/status/1354998048439599107?s=20
After all, all any of the people selling these programs or running clinics know is that here they have a desparate, hurting human who has walked through the door, to whom the medical system has offered not many options. They cannot distinguish between a patient who will benefit..
...and a patient whose symptoms are due to an ongoing problem that everyone would agree cannot be helped via neuroplasticity/brain retraining, etc. That one doctor, or even many doctors, have failed to find the problem is a low bar. I think we collectively recognize that now.
I think of brain retraining as something that might help some people turn off the alarms once the fire has been put out. https://twitter.com/julierehmeyer/status/1354997676442603521?s=20
The problem is, we have no way of confidently distinguishing between a person who has an alarm that won’t turn off and a person who still has (possibly several) smoldering or raging fires.
It is dangerous to try to turn off the alarm when there is still an uncontrolled fire.
It is dangerous to try to turn off the alarm when there is still an uncontrolled fire.
And so I see this battle between people who say, “Don’t listen to other patients, don’t listen to yourself, it’s just your body generating a false alarm” and those who say “I MUST listen to my body, there is an actual fire, the alarms are protecting me from causing worse damage.”
I was definitely in the latter category. Activity made me much, much worse. Ignoring the signals of distress my brain was sending me did as well. However, I suspect either or both could be true depending on the person.
And again—fact is, if you’re Phil Parker, you have NO IDEA if the person coming through your door has a faulty alarm they need help shutting off or if they have adult tethered cord syndrome! (For example.) Both people would be treated the same.
Which is bad bad bad because activity aggravates neural tension on the cord, exacerbates cord hypoperfusion, and forces you to create energy using anaerobic metabolism under conditions of hypoxia (for example).
The best doctors I know, the ones I see actually improve their patients’ QoL or even get some patients better, are incredibly humble and cautious about the claims they make and the certainty they have about whether what they can get someone better.
If someone who was science-literate, who understood all of the above, who worked in referral networks with specialists offering other diagnostics/approaches came along and said, “Here’s a modality that might help some patients,” I think that would be a wonderful thing.
I would think of it as physical therapy for the brain. Like good PT, it would need to be adapted to each person’s case/circumstances. Like PT, it would be foundational/“enough” in some cases; in most cases an adjunct, not a total solution; in other cases, inappropriate.
However, I don’t see anyone taking that approach. So, here we are and here we will remain.
