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

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.
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I don’t agree with the things that are not programs. There is no evidence for this either.
 
Utsikt said:
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.
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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.
 
MittEremltage said:
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.
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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.
 
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.
 
The Bateman Horne Center's recommendation on brain retraining goes against their own guide - in today's post I'll show how.

Link Part 4: Why the recommendation by BHC is risky and contradictory (part 4)

This is what I think is so risky when it comes to people living with PEM.

  1. You are taught that you are not ill, but that your brain is stuck in an unfavourable state that you can restore with the help of brain training.
  2. You should focus on everything except your symptoms.
  3. But at the same time, you are encouraged to trigger symptoms by stepping outside your comfort zone, and this is a prerequisite for the brain to be able to recover.
  4. You should consciously put yourself in an elevated emotional state (here, for example, is a person who shows how to do this by forcing laughter) reduce any discomfort.
  5. It is about increasing activity and getting your body used to a new level of activity.

I cannot understand how you can do this and at the same time follow the recommendations in the BHC clinical guide.

The guide contains a lot of information about post-exertional malaise (PEM). My understanding is that BHC places great emphasis on PEM being an undesirable condition that should be avoided.
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I cannot understand how you can do this and at the same time follow the recommendations in the BHC clinical guide.

The guide contains a lot of information about post-exertional malaise (PEM). My understanding is that BHC places great emphasis on PEM being an undesirable condition that should be avoided.
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It is like there are two different people writing their stuff, who never talk to each other.
 
Sean said:
It is like there are two different people writing their stuff, who never talk to each other.
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I've had this thought too, because their claims make no sense right now. I'm wondering if one person wrote about PEM, and then somebody else (who doesn't believe in PEM) wrote about neurplasticity programmes. Then a third person (who knows nothing about PEM or DNRS but is supported by AI) is doing the answering.
 
Friendswithme said:
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.
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As a patient rep working closely with biomedical researchers here in the Netherlands, I can confidently say they do see signs of real damage in the body and the findings align with what we see elsewhere. Yes, it's preliminary, for the moment unpublished, and the research is still developing, but dismissing it just because the studies are small doesn’t mean there’s nothing there. That kind of thinking is both problematic and misleading.

I do think there are some people who might already be on the path to recovery, improving, or maybe more prone to "catastrophizing" — and they could maybe benefit from some of the brain retraining techniques. But to claim there’s no physical damage at all in M.E.? I know it's a cliché, but the only thing I can say is: absence of evidence isn’t evidence of absence.
 
Grigor said:
I do think there are some people who might already be on the path to recovery, improving, or maybe more prone to "catastrophizing" — and they could maybe benefit from some of the brain retraining techniques.
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This. It would be ok to diagnose comorbid anxiety and treat it in a way that does not risk the patient getting PEM. Mainly through meds and a therapist that truly understands PEM (which most don't so that might still be a bad plan).
 
Jesse said:
Just to flip this around a bit: don't we have evidence from PACE that CGT is not effective for ME/CFS? Isn't this CGT approach to ME/CFS pretty much the same as what's being call brain retraining here?
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In the sense that graded exercise therapy and pacing up are essentially equivalent.

There is an argument to be made that the specific modalities change outcomes, but essentially no evidence to support it.

But we’re at the point where PACE is still considered a “thing of beauty” by those promoting brain retraining in general. (Of course this doesn’t apply to BHC).

But if the BHC are willing to prescribe things because of glorified anecdotes (which is called “clinical experience”), i think there isn’t much evidence wise that will get through to them.
 
Jesse said:
Just to flip this around a bit: don't we have evidence from PACE that CGT is not effective for ME/CFS? Isn't this CGT approach to ME/CFS pretty much the same as what's being call brain retraining here?
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The PACE theoretical model for CBT, which it has one, despite PACE pretending to be a 'pragmatic' trial, is explicitly a fear avoidance (whatever that means) model based on the same ideas. To be fair, "brain retraining" is a completely fluid idea that means whatever one wants it to mean in whatever context they need it to mean that thing. Like Feng-shui. And it's as scientific as "detoxifying". Actually, has even less evidence for it (toxins are definitely bad for us).

Actually, I was curious and decided to google it. Of course results are tailored to me, but, still, the first page of results is mostly made of commercial websites selling their own version of it (the first result is DNRS, a popular quack program) or media articles promoting it. Going down more pages: Gupta, more commercial programs, ME-Pedia warning about, youtubers selling their own program.

There are a few otherwise legitimate resources in the results, but most of them are influencers or companies selling their program. This stuff is 100% pseudoscience, it's shameful for medicine to not oppose this junk, but since they clearly chose to join alternative medicine instead of beating them, they're only becoming more like them, not the other way around.

It's actually funny, in fact the main outcome of this one-sided merger has been that the alternative medicine quacks simply adopted the language used by health care professionals, but kept the substance the same. So all that medicine has achieved here is promote quackery. This is a truly shameful time for this profession, one that has enabled a truly absurd number of such embarrassments.

pace-cbt-model.jpg
 
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.
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