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Unevidenced recommendations of brain retraining in Bateman Horne Centers clinical guide for ME and longcovid
- Thread starter MittEremltage
- Start date
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
Brain Retraining treatment for ME/CFS and Long COVID - discussion thread
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MittEremltage
Senior Member (Voting Rights)
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:
Link: BHC's comment on my posts on their recommendation of brain training (part 5)
Spoiler:
Lily Valley
Established Member
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.
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
Senior Member (Voting Rights)
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
Established Member
I totally agree!
Peter T
Senior Member (Voting Rights)
Even if the Center believes there is a specific ‘supportive’ role for non curative brain training, obviously many, if not the majority of practitioners, believe they can provide a curative input, further even doing something on line, with no overseeing practitioner, would only hypothetically be reasonable if the materials had been written specifically with people with ME/CFS in mind.
Consequently I don’t see how the Centre can effectively recommend brain training in general as they have no idea under what circumstances an individual patient might seek to access it. I personally agree with most above, that they should not be raising brain training at all, however even accepting their suggestion that it may have a value for specific patients under specific circumstances, they then should only be recommending individual practitioners that they believe understand the necessary safety parameters. It would be like saying people find yoga helpful with no attempt to distinguish between the different forms that vary from hard core gymnastics to gentle movement that is adapted to the individual’s needs, which even then may be too much for many patients.
As repeatedly pointed out the Center’s position makes no sense. They are behaving with all the professionalism of someone down the pub suggesting something because their neighbour’s auntie raves about it.
Consequently I don’t see how the Centre can effectively recommend brain training in general as they have no idea under what circumstances an individual patient might seek to access it. I personally agree with most above, that they should not be raising brain training at all, however even accepting their suggestion that it may have a value for specific patients under specific circumstances, they then should only be recommending individual practitioners that they believe understand the necessary safety parameters. It would be like saying people find yoga helpful with no attempt to distinguish between the different forms that vary from hard core gymnastics to gentle movement that is adapted to the individual’s needs, which even then may be too much for many patients.
As repeatedly pointed out the Center’s position makes no sense. They are behaving with all the professionalism of someone down the pub suggesting something because their neighbour’s auntie raves about it.