Unevidenced recommendations of brain retraining in Bateman Horne Centers clinical guide for ME and longcovid

[MittEremltage]

Today's post includes a critical analysis of the Bateman Horne Center's response on its recommendation of brain training in the clinical guide for ME and post-covid.

Link part 3: A critical analysis of BHC’s answers (part 3)

 

[Peter T]

If brain training is not going to impact on the underlying condition and you should only attempt it when well enough and stable enough, as per the Center’s communications, what is the point of it? What is doing this ‘training’ supposed to achieve? Is it safe or acceptable to recommend something, even if it may have some sort of support or maintenance role when the practitioners are separately marketing it as a curative treatment?

Is the Center effectively saying do this cautiously knowing you will have to ignored much or what your practioner advises? If so how will the patient know what to listen to and what to ignore?

 

[NelliePledge]

if people are telling you your wording can be interpreted in a different way than you say you intended then you need to tighten the wording so it is unambiguous.

 

[shak8]

Because I am subscribed to the Bateman Center's newsletter, I get frequent emails asking me to donate to the center.
I wonder now much people- or client-pleasing behavior influences the mention of brain training.

Does pleasing the clients by validating their anecdotal (n=1) reporting, instead of sticking to medically evidenced guidelines, have anything to do with raising funds from them and their families and friends. The idea of not alienating anyone, of accepting everything from everybody so as to increase donations?

 

[Utsikt]

From the conclusion of post 3 from @MittEremltage

I don’t really understand why BHC insists on talking about ‘programmes’. If they had been content to talk about strategies for managing stress, about how mindfulness, affirmations and breathing exercises under individual supervision can benefit these patients, it would have been different.

I don’t agree with the things that are not programs. There is no evidence for this either.

 

[MittEremltage]

From the conclusion of post 3 from @MittEremltage

I don’t agree with the things that are not programs. There is no evidence for this either.

Yes, you are right about that. I was mostly thinking that the possibility to customize for the individual that BHC is talking about is basically non-existent if they participate in a program compared to getting help managing stress in an individual treatment relationship.

 

[Utsikt]

Yes, you are right about that. I was mostly thinking that the possibility to customize for the individual that BHC is talking about is basically non-existent if they participate in a program compared to getting help managing stress in an individual treatment relationship.

I don’t think there is much evidence for individual treatment relationships either, but it’s probably more widely accepted.

I had lots of benefit from working with my therapist, but that was probably because she never tried to dictate what I would do. We just talked about things and she gave suggestions for things I might try. I probably immediately turned down half of them and only stuck with a handful.

But therapy isn’t regulated and the content is completely arbitrary. There is no guarantee that individually tailored approaches in general will have any benefit, and it’s probably mostly dependent on the therapist not being convinced they know everything or being married to their pet theory.

 

[shak8]

I think that brain retraining could result (however briefly) in an increased sense of personal control over the illness. Perhaps dopamine is released or endorphins or some other neurotransmitters.

It may also include a bit of magical thinking and placebo response.
.
If one employs relaxation techniques, learns to tolerate some of the milder intrusive symptoms somehow (I am not convinced that moderate to severe symptoms can be downplayed by the mind's efforts) this concerted effort by a PwME or FM may release more beneficial neurotransmitters and thereby improve mood. But a better mood doesn't make one more adept at preventing relapses or PEM episodes; in fact, a better mood might engender more activity and less carefulness, more PEM, more relapse, more severe symptoms.

And I want to mention that the Bateman Center is located in Salt Lake City, Utah, and the leadership and many local clients could be subject to more easily have magical beliefs relating to healthcare, due to their religion. I haven't studied the link, if any; it is conjecture on my part.

Pleasing clients by validating their scientifically unevidenced therapies----would that increase the amount of donations? Or is it a move in be "inclusive" to all patient views..