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

[MittEremltage]

The BHC is appealing for donations to spread its guide - and by extension, its recommendation based on pseudoscience. It makes me sick to my stomach.

Link: Facebook

 

[Trish]

Some posts discussing how brain retraining is claimed to work have been moved or copied to:
Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

 

[MittEremltage]

The BHC has read my posts in advance and has provided a comment. In this concluding post, you will read their comment and my concluding thoughts.

Link: BHC's comment on my posts on their recommendation of brain training (part 5)

Spoiler:

Unfortunately, the BHC’s comment is mostly a repetition of what they said in our previous dialog and they do not touch at all on the fact that the recommendation on brain training strongly contradicts their own guide. It is disappointing to see that an institution that otherwise so clearly stands up for both science and patient safety ends up this far off the mark when it comes to delineating itself against potentially harmful pseudoscientific methods.

 

[Lily Valley]

Thank you for these blog posts @MittEremltage , especially the careful breakdown of how vague the BHC section on neuroplasticity really is. Their response only highlights the problem: either they don’t understand what these programs involve, or they won’t. Either they haven’t read, or are unwilling to engage with the NICE reasoning behind the warning against them.

On the one hand, they claim to support the NICE guidelines. On the other, they include language that undermines those very guidelines by legitimizing the same type of interventions NICE explicitly warns against.

It’s not just vague, it’s internally inconsistent. And it’s becoming harder to believe this is unintentional. The language BHC uses to defend their position is almost identical to what advocates of brain training programs say themselves. From a patient perspective, it raises concerns about underlying bias, alignment, or even promotion, whether formal or informal.

Unfortunately, BHC has previously shown an unwillingness to listen to patient concerns about brain training programs, and they seem to be continuing that pattern now.

This situation is deeply concerning. I hope BHC will revise the recommendation to match NICE’s clear warning, and stop making claims that simply aren’t accurate. Either you stand fully with NICE or you don’t. The nature of these brain training programs leaves no room for middle ground.

 

[MittEremltage]

Either you stand fully with NICE or you don’t. The nature of these brain training programs leaves no room for middle ground.

Thank you for reading!

I think this also opens up the possibility that the Oslo Chronic Fatigue Consortium will have influence. And I think that is perhaps the most dangerous thing in this, that when you open up for brain training, you cannot or credibly mark against BPS influences in general.

 

[Lily Valley]

Thank you for reading!

I think this also opens up the possibility that the Oslo Chronic Fatigue Consortium will have influence. And I think that is perhaps the most dangerous thing in this, that when you open up for brain training, you cannot or credibly mark against BPS influences in general.

I totally agree!