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.

 

[Friendswithme]

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.

I just wanted to correct some inaccuracies or misunderstandings I've spotted in this thread.

Brain retraining is not about tolerating milder intrusive symptoms.

It's about learning that symptoms can be generated by the brain as a warning signal that it doesn't need to send (the idea is it can become over sensitised in certain conditions, such as when someone has experienced trauma or has a particularly sensitive temperament). The techniques acknowledge your symptoms are real but teaches you how to dampen down the brain's sense of being under threat so they stop. The symptoms go, you aren't ignoring anything or tolerating anything.

It's not so much about neurotransmitters as about calming down an overactive primitive alarm system.

 

[Friendswithme]

My response:

I respect your right to email them but there are a couple of inaccuracies here that I felt important to address.

'Instead, they suggest the brain is misinterpreting harmless bodily signals as harmful.' This is not quite right. It's not that there are harmless signals that people are making a fuss about when they shouldn't, it's that there are signals but the brain is generating them as a warning system. So we can teach the brain to calm them down as there is no real physical threat. You get taught to watch for symptoms that might jump around, which can indicate there is nothing structurally broken, to then teach your brain it is safe and doesn't need to keep sending out signals indicating harm. Weird but true. It's why some people make such quick recoveries after years of being ill.

'Surely the BHC is aware that this assumption is false?' I know its a big leap to accept there might be nothing physically wrong with your body but there isn't actually any replicated evidence that has found anything wrong in M.E so it's not a false assumption. Real symptoms, yes, but no actual damage found. You will always get small studies showing issues just because the symptoms are real and have an impact on test results but nothing has been found as yet that demonstrates causality.

 

[forestglip]

'Instead, they suggest the brain is misinterpreting harmless bodily signals as harmful.' This is not quite right. It's not that there are harmless signals that people are making a fuss about when they shouldn't, it's that there are signals but the brain is generating them as a warning system.

That sounds like what Grigor said. He said the idea is that the brain is misinterpreting the signals, not "people".

 

[Utsikt]

It's about learning that symptoms can be generated by the brain as a warning signal that it doesn't need to send (the idea is it can become over sensitised in certain conditions, such as when someone has experienced trauma or has a particularly sensitive temperament).

This is a completely unevidenced statement.

I also don’t think that anyone has the power to define «brain retraining». Are you saying that you definitely know that what @shak8 is saying has never been said by those that claim to teach «brain retraining»?

And who is the brain sending symptoms as warning signals to?

 

[Utsikt]

I know its a big leap to accept there might be nothing physically wrong with your body but there isn't actually any replicated evidence that has found anything wrong in M.E so it's not a false assumption.

It’s an assumption that can never be proven as true. Do you agree that that’s a problematic starting point for designing an intervention?

 

[Utsikt]

You will always get small studies showing issues just because the symptoms are real and have an impact on test results but nothing has been found as yet that demonstrates causality.

What do you mean by «demonstrates causality»?

 

[Utsikt]

@Friendswithme also, how can the brain behave abnormally if there is nothing physically wrong with the body?

The brain is a part of the body, and there is nothing beyond the physical.

 

[Jonathan Edwards]

This is the key point. Everything we are talking about is physical. There is no 'mind-body' Cartesian duality. So I agree with Utsikt that none of these comments add up. It is not as if they are saying anything new - they have been around for decades, as meaningless as they are now.

 

[rvallee]

Brain retraining is not about tolerating milder intrusive symptoms.

It's about learning that symptoms can be generated by the brain as a warning signal that it doesn't need to send (the idea is it can become over sensitised in certain conditions, such as when someone has experienced trauma or has a particularly sensitive temperament). The techniques acknowledge your symptoms are real but teaches you how to dampen down the brain's sense of being under threat so they stop. The symptoms go, you aren't ignoring anything or tolerating anything.

It's the claim, but there is no evidence such a thing exists, no matter how popular that belief may be.

Otherwise, why not promote homeopathy also? Or acupuncture's "body reprogramming". Or The Secret?

 

[shak8]

Teaching your brain something....hmm. I've never had luck with that project. It's more the other way around.

Sounds like brain retraining is indicated for those with a psychiatric diagnosis, or nearly one per @Friendswithme. That is what you indicated in your reply to my post.

In that case, it's a matter of educating and reassuring the highly distressed patient that their pain signals are aberrant, that they are not in danger.

This is akin to the concept of anti-pain catastrophization in that it is rolled out and extolled as virtuous for those patients who vocalize repeatedly how awful their pain is and how they can't cope with it, at all.

So a roll out of a trademarked "program" to guide the pain patient who is vocal about their intense suffering along the path to minimizing their assessment of pain's insistence, it was a veritable catastrophe (at least in my case).

Do the patients in both brain retraining and anti-pain castastrophizing experience less pain and other symptoms due to these interventions? No. There is the placebo effect of having attention and emotional reassurance from an authority figure in healthcare, a shaman, if you will.

The patients are socialized not to be in distress in front of the health professions. That's the aim, also.

Fine. Just asking for honesty here. You aren't really doing effecting a lasting positive change in symptoms. Brain retraining and pain anti-catastophizing are simply patient education and reassurance, and training in how to comport oneself around healthcare personnel (don't irritate them with strident whining).

You can reference the amygdalla etc. but that doesn't change the story: it's magical thinking placebo response invoked and anectodotally.

(edited at least twice)

 

[Sean]

an overactive primitive alarm system.

What is the evidence that

1) it is "overactive", and​

​

2) is the primary problem, not an appropriate response to, nor an unavoidable consequence of, a more fundamental and serious problem, and​

​

3) is amenable to 'brain retraining' that consistently delivers a meaningful practical benefit, let alone a cure, to ME/CFS patients?​

Because I have yet to see any evidence for that in the quarter century I have been paying attention to the science on ME/CFS, et al.

 

[Peter T]

The point of this thread is that this is a formal health clinic specialising in the management of ME/CFS apparently recommending an unevidenced psycho-behavioural treatment. These arguments would equally apply to recommending a drug treatment based on an underpowered physiological study of ME/CFS, and if you look through the site you will find many objections to unevidenced use of various medical treatments, sacro cranial surgery being such a treatment under current discussion.

@Friendswithme, obviously you genuinely believe that brain training is potentially curative for ME, but for an official body to recommend this as a treatment there needs to accepted research evidence. There are many people out there that equally believe their preferred treatment works and will be able to cite anecdote and snippets of science in support, but would you have the Bateman Horne Center circulating information on replacing all filings containing dental amalgam (I am showing my age with this one), going on raw food vegan diets, have spinal surgery fusing the upper spine to the skull, undertake the Lightening Process, using which ever supplements are currently in and (my personal favourite) having an exorcism.

You might argue that brain training is more respectable than any of those, however psycho behavioural interventions have been extensively studied in ME/CFS and all we can conclude is that even the most successful only have achieved temporary changes in questionnaire filling behaviour.

Anyone with long-standing ME/CFS regularly experiences well meaning suggestions for treatments from friends and acquaintances, one that always gets me riled is ‘have you tried yoga?’ as I was within weeks of qualifying as a yoga teacher when the infection that triggered my ME struck, however we expect more from the Bateman Horne Center. Most of us here are with the 2021 NICE guidelines that we currently have no evidence for any curative treatments of any sort, regardless of any beliefs about aetiology.