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

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.
 
Lily Valley said:
Either you stand fully with NICE or you don’t. The nature of these brain training programs leaves no room for middle ground.
Click to expand...
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.
 
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.
 
Peter T said:
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.
Click to expand...
I agree. By giving any sort of green light to brain retraining programs, they are encouraging vulnerable people to put themselves in the hands of cult like organisations that use brainwashing techniques. This is not some soft, risk-free stress reduction exercise, it's hard sell stuff that tells people to deny their own reality.
 
Trish said:
I agree. By giving any sort of green light to brain retraining programs, they are encouraging vulnerable people to put themselves in the hands of cult like organisations that use brainwashing techniques. This is not some soft, risk-free stress reduction exercise, it's hard sell stuff that tells people to deny their own reality.
Click to expand...
I agree

I understand that some people thought there were tactical moves in the past of pretending to be nice about the 'thanks for the mental health help' to 'play nice' and 'not be accused of being anti-mental health' but I was warning of that even then

- its a lazy one from people whose background made them prefer to back off ('I'm no expert' kind of thing), rather than consult the people who knew enough to arm them with what they should be saying. Although with the term 'lazy' I don't mean the people but the situation - because I know there was also the risk of them using this as a distraction from what needed to be discussed (so it was about not letting the topic overawe other more important points).

And they forgot or didn't think enough (and that was perhaps where I if I wasn't so ill, but perhaps should have just been listened to anyway without having to push to be heard, should have pushed) that them 'not being experts' meant they shouldn't be saying anything at all without consulting with those who did know more. But yes we all get deliberately avalanched/war of attrition in a way that shouldn't be allowed really of so many false things being not sorted straightforwardly and allowed to be said then left with the energy-limited to refute at length etc.

I mean plenty of pwme have degrees, knowledge, expertise that meant they could. And there are some very good allies who are probably positioned to nail this for the long-term with a more specific line that doesn't kick a can down the road.

It is a naive position, and is the same 'error type' being repeated again and again, because there seems to always be some new version/branding of something similar.

I'm not sure these people (who deliver these treatments themselves) even quite realise that they might be using different names or claim slightly different changes in these things but that it is the same darn thing underneath that these people are selling - in as far as you'd imagine a pharmaceutical treatment = drug + adjuvant + delivery mechanism.

If they keep trying to push the same 'drug' part underneath but it causes harm, or even 'doesn't work because it's nothing to do with the cause or the issue' like giving those B12 deficiency caffeine, then not noticing that and realising the sales pitches which are always based on the 'adjuvant and delivery mechanism' and never mention the mis-attribution of cause means it's a dead duck or harmful thing they are trying to shove down throats then the replies need to not playing into that distraction and inadvertently holding up and exacerbating that illusion.

Which is what the nice-y etiquette does. Because they aren't seeing that lack of clarity and explanation is a problem.

We perhaps need to start finding a way of nailing saying 'the issue is that whatever the branding or new-fangledness, no amount of caffeine therapy is going to cure those who have B12 deficiency - even if some who do it short-term say they felt more alert - and this is just another version of the same thing with Ginseng added and delivered by spray instead of tablet'.

I'm not sure that this isn't one of those rare analogies where I was tempted to say except this genuinely is one of those at least it doesn't do that much harm for those who try it situations, but if you think about adding all the misinformation on top in particular then maybe it isn't, I can see how this could theoretically be pretty equivalent (if it meant those with B12 deficiency had proper treatment postponed or their issue misattributed).
 
Last edited:
I understand there is politics sometimes (don't bad-mouth other whatever) - in which case the standard is 'no comment', not 'maybe if'.

And we all know too well that for very long periods of time ie many many years when we first get ill we would all rather try and check we aren't 'one of the miracle ones for whom the cure works even if it makes no sense, because the alternative of 40% of energy and just do your best with 140% of the obligations + being thrown at you vs normal people isn't much of an alternative'.

This one is a big issue. And it points to the answer needing to be that the 'what are we doing about sorting this alternative (rather than just find a way to survive financially whilst cutting your life down)' needs a much better answer. And Bateman Horne are one of the better-positioned people to be suggesting what the world and those around us can be doing.

I've noticed the narrative on MS social media and websites from many charities having the one-liner thrown in a lot of 'make sure that you use trusted information sources' too, whilst also keeping things filled with hope (as they have more support to offer or more research in the pipeline maybe, but still). So it might be worth a look there.


But the major line that this was sold on by eg the Claire Gerada/Chalder video with GET was that line they didn't really have the evidence I don't think to say of 'of course it won't harm you'. Because that is what informed consent it, and the reason informed consent involves risks vs benefits of different things is because people want to know if something will 'leave them worse off'.

On a micro level these things can leave people worse off - toying with hopium, worse messing with people's support networks becoming contingent on 'being seen to have tried' and access to adjustments that can stop people in those first key years getting worse by having a life expecting 100% from them when they need it reduced to 60% from being delayed for 3 yrs, when it is too late because they know only have 40% left.

On a macro level it does the same in preventing access to whole systems believing people and just getting on with pragmatic adjustments that could save working lives and independence like eg 'allow part time quickly' instead of 'add CBT every lunchtime into their calendar' or even more significant things that people need. Because of that nonense 'what if' these made up things are there to insert.

Scarily it can harm this way without people even needing to do it therefore, until people start stepping in to work out how to fix this strange 'norm'.
 
Last edited:
And there is something more fundamental which I find shocking is being sold:

the idea that messing with people's thinking is so benign that noone should even expect half-decent paperwork on what and why these people are delivering, nevermind something properly forensic. Even if it wasn't ill people or anyone with a problem.

Which is the opposite to the truth.

Why on earth should ill people be thrown into a vulnerable and predatory market and have their 'thinking' or need for this nonsense questioned and be told they think wrong when they do not.

How on earth is that aggression OK? When they are already dealing with disability + disability bigotry + specific condition misinformation and bigotry.

It is about time we found a line between all of us to awkwardly and politely say that this is apalling behaviour which to me very much has its roots in the misogyny behind locking ill women (or those who just weren't liked or inconvenient etc) in assylums historically but not that historically 'to be dealt with', as well as other minorities, the disabled 'needing motivation to sort their problems' (coming from people who don't look at the systems and how they 'work' or that they just pedestrianised an area and make xthousand more people 'wheelchair dependent' to access their own office or shops that are now an 800m walk instead of drop-off outside, but I wonder why more 'applied for PIP').

There is not really any such thing of a 'just a little bit' being OK of this to validate that 'maybe we do or might just need a bit' and make some even more huge risk go away by accepting the smaller risk being OK, and not being yet another trick and coercion.


In reality the 'just trying to help' nonsense doesn't cut it now we've seen how most of those pushing into (rather than the proper professionals doing real psychology in other areas being there as a 'pull communication'/an option) such areas camoflage or delude themselves has been shown not to add up.

Because they have never changed their one-liner to methodology being something they see themselves as exempt from, and their attitude being wilful ignorance is OK regarding harm. As soon as anyone selling this stuff isn't writing down with fervour every single piece of feedback someone who has ever experienced any of these things reports to them with a genuine interest to look into it to change it because they believe said harm then it becomes obvious who they are and what they are happy to deliver isn't help.

They (those offering whatever therapy who supposedly have such responsibility due to using the term 'professional' regulating them) aren't making sure they are triaging only to those it doesn't cause such harm to or placing warnings of who it doesn't work for etc. It isn't down to independents to be having to do this, but saying 'don't go to anyone who doesn't explicitly do this triaging and isn't being upfront about all of this'. Which doesn't seem to be something I've seen is commonplace at all in this area.

This isn't offering a free sample of a perfume in a magazine and if the odd person finds it is wonderful but the rest think it stinks then no worries we've helped those who did like it find their next perfume. And noone thought the magazine was suggesting they should be wearing it etc.


Being from a marketing background it is clear these people just by their claim of it being 'help' are suggesting it is a 'need' not a 'there if you just fancy passing your time with this'. And the spiel is all about telling others there 'is a need'.

SO if we are specific about what these brain retrainers (or whatever they called themselves before) are selling, then it isn't 'brain retraining' but they are actually selling 'that x identified people need brain retraining' - even if they term that as 'it will/might help' instead of using that word 'need'. ie they are marketing something about an identified group of people, not marketing their actual wares (because they can't resist crossing that line in saying brain retraining 'addresses something x have').

And it is making promises they don't/can't(?) either explain nor describe in 'you will receive one session going over a maths GCSE past paper' terms to describe the service, but very different 'outcome' type language (to the common-sense outcome that goes with the example of: will feel more confident on tackling maths GCSE papers - we tested, or we are saying it because it is logical). The difference here you will note is that noone is having to tell the reader whether those who use that service are either already brilliant at maths, or have certain difficulties with maths - it's all about the actual service.
 
Last edited:
MittEremltage said:
Yes!

They told me yesterday and I just published a blog about it.

Link: BHC removes brain retraining recommendation!
Click to expand...
Thank you for putting the pressure on them. It’s great that they’ve removed it, but their response isn’t very reassuring..
Currently, there are divergent approaches to understanding these conditions and optimizing care. BHC does not support any intervention or modality that could be used to dismiss or put blame on the patient, nor should any treatment ask patients to deny their symptoms or experiences. In discussion with the broader lived-experience community identifying controversy surrounding the term neuroplasticity and expressing concern for potential confusion, misinterpretation, or harm, this mention has been removed from the Guide.
Click to expand...
All of these concerns are valid, but they miss the key point - there is no evidence in favour of neuroplasticity. This isn’t about someone misinterpreting what it is.
 
I wrote the following to them:

Dear x,

Thank you for your response.

You asked whether the text should be reworded to emphasize that surgery is a last resort, but that’s not the only concern I have.

There is no mention in the guide of the significant harm these surgeries can cause. First, the procedure permanently fixes the neck—there is no way back. Moreover, for many patients, the surgery either has no effect or even worsens their condition. When improvements do occur, they are often incremental at best.

We also lack reliable methods to predict who might benefit. While preoperative traction might offer some guidance, it remains an uncertain predictor.

Importantly, there is no evidence that these surgeries improve or resolve ME symptoms. Fusion surgery has never been properly studied in the context of ME. Yes, some patients report improvements, but there's no proof that the surgery itself is the reason.
Other factors—such as the use of anti-inflammatory drugs like dexamethasone, which some surgeons administer after surgery—could also explain these improvements.

Claiming improvement is due to the fusion simply because it followed the procedure is a classic case of post hoc, ergo propter hoc. Dr. Yellman seems to imply this causality in several instances, which I find both disappointing and concerning.

The guide states:

“Structural instabilities in the spine can lead to neurological dysfunction, dysautonomia, pain, and worsening PEM.”

But where is the evidence that spinal issues worsen PEM? Has this been properly studied? You refer to the work of Gilete, among others, yet he has been publicly criticized in Dutch media for not publishing outcome data, charging extremely high fees, and in some cases causing harm to patients. In one of the videos referenced, he merely presents a single case without deeper analysis.

archive.is/ifU5A

If you do feel you need to include a section about biomechanical considerations, it must clearly acknowledge:

• That there is no evidence linking these surgeries to ME symptom improvement

• That reported improvements are often minor—or entirely absent

• That the procedures can cause serious and lasting harm

This letter, in my view, is far more objective and constructive than what your current guide offers:

drive.google.com/file/d/1J86TnhvHRA29zlihgG9jiGAlTAQ_nFU-/view?usp=drivesdk

To be frank, I find the guide deeply concerning—especially the sections on brain retraining and CCI, but also many others that present unverified claims as fact. It comes across as unscientific, and I would be very uncomfortable sharing this with my doctor. In fact, I fear many clinicians would dismiss it outright, which ultimately does a disservice to patients.

I strongly urge you to revise the guide to be more nuanced, more critical, and clearer about the lack of evidence and the potential for iatrogenic harm. As it stands, the content is misleading, potentially harmful, and deeply disappointing.

I sincerely hope you'll take steps to improve it. As it is now I'm definitely not recommending it to anyone.
Click to expand...
They responded:

Hello A,

Thank you for clarifying your concerns. I have passed your message on to our provider team. We appreciate the partnership with the community. In regards to the neuroplasticity mention the providers have been carefully reviewing feedback from some community members. Please see their response below.

-------------------
The Clinical Care Guide offers guidance and support to providers and patients navigating the care complexities of ME/CFS and Long COVID. This resource provides allied clinicians with the knowledge and backing to optimize the care of their patients and will be revised regularly to incorporate emerging evidence-informed knowledge.

Currently, there are divergent approaches to understanding these conditions and optimizing care. BHC does not support any intervention or modality that could be used to dismiss or put blame on the patient, nor should any treatment ask patients to deny their symptoms or experiences. In discussion with the broader lived-experience community identifying controversy surrounding the term neuroplasticity and expressing concern for potential confusion, misinterpretation, or harm, this mention has been removed from the Guide.

BHC Administrative and Medical Team
Click to expand...
I obviously feel they could better leave the whole biomechanical considerations part out, but I doubt they'll do that...
 
You must log in or register to reply here.
Back
Top Bottom