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

MittEremltage

Senior Member (Voting Rights)
Bateman Horne Centers new clinical guide ”CLINICAL CARE Managing ME/CFS, Long COVID, & IACCs” contains a problematic recommendation for brain retraining (chapter 7 p 23).
”Neuroplasticity programs designed for autonomic nervous system dysregulation

*While these techniques may help modulate sympathetic "fight-or-flight" responses, they should be viewed as supportive adjuncts rather than curative treatments and should not replace comprehensive clinical management. Initiation of neuroplasticity programs must be implemented on an individual basis and at a time in the recovery process when the patient has reached improved PEM stability.”

BHC do not provide any sources to support their recommendation.


Today, I have published part one of a series of posts on my blog related to this recommendation. I have had help translating the posts into English.

Link: Recommendation on brain training in Bateman Horne Centre’s new clinical guide (part 1)

”In recent years, I have written about brain training, or neuroplasticity training as it is also known, on several occasions and concluded that these methods lack scientific support for ME and post-COVID.”

”As I had previously read about different types of brain training and concluded that these are methods whose hypothesis and treatment lack scientific support for ME and post-COVID, I was surprised to see the recommendation in BHC’s new clinical guide. The recommendation is also vague and lacks sources, which prompted me to write an email to the clinic asking what type of programme they mean.”
 
Bateman Horne Centers new clinical guide ”CLINICAL CARE Managing ME/CFS, Long COVID, & IACCs” contains a problematic recommendation for brain retraining (chapter 7 p 23).


BHC do not provide any sources to support their recommendation.


Today, I have published part one of a series of posts on my blog related to this recommendation. I have had help translating the posts into English.

Link: Recommendation on brain training in Bateman Horne Centre’s new clinical guide (part 1)
Ugh

Thanks for picking this up

Scary that it’s reach Bateman Horne.
 
Is there any way to gain insight into such donations?
Please excuse my cynical remark (comes from recent events about money's influence on policy). I think, or I hope, the Bateman Center is highly ethical.

It seems, from my internet search, that you would have to ask Bateman directly whether or not brain retraining programs have made donations and how big.

Over the last decade I have read some woo-advice on the Bateman site that I attribute to a lax attitude about evidence-based medicine. Their defense seems to be "clinical wisdom" coming from having scads of ME or FM patients.




see also: https://batemanhornecenter.org/about/
 
Last edited:
I put the Bateman Horne Center on the spot about their recommendation on brain training. Today you can read their response.

Part 2 (link): Dialogue with BHC regarding the recommendation on brain training (part 2)

A sneak peek at the BHC's reasoning:
”We have observed clinically that some patients with dysautonomia show improvement with these approaches. These clinical observations form an important part of our evolving understanding of treatment approaches.

Some practitioners using structured neuroplasticity programs such as DNRS (Dynamic Neural Retraining System) have reported significant improvements in autonomic function in some patients with POTS and other forms of dysautonomia following COVID-19.”
 
Thank you, @MittEremltage for taking such a thorough approach to challenging BHC on their recommendation. It looks like all they are saying the brain retraining programs their patients have tried is a minor improvement reported by patients in symptoms that come under the dysautonomia umbrella. They are not using them as treatment for the underlying ME/CFS.

Edit: I have been wondering whether this short section in their guide is a result of some of their patients being persuaded by online influences to try brain training, and the BHC trying to limit harms by restricting their use by telling patients not to use them unless their ME/CFS is very stable and to warn that the brain retraining is unlikely to cure them. If that is the case, they should straightforwardly say so.
 
Last edited:
If that is the case, they should straightforwardly say so.
Yes, if that's the case, they need to be clear about it. As it is now, it just gets confusing.

I'm getting ahead of myself (more on this in the next post) but why do they insist on talking about "programs"? They could have just as easily talked about different ways to deal with stress?
 
I put the Bateman Horne Center on the spot about their recommendation on brain training. Today you can read their response.

Part 2 (link): Dialogue with BHC regarding the recommendation on brain training (part 2)

A sneak peek at the BHC's reasoning:

8. Finally, I wonder how you think about recommending a treatment that is largely sold to individuals by profit-driven companies?
Doesn't this apply to basically all potential drug treatments as well?

Separately, I'm pretty certain the second response from them is mostly written by an AI. The gratuitous bolding for emphasis, the section headers for each point, the summary at the end, the use of em dashes, and some of the phrasing used throughout are all common signatures of AI.
 
Doesn't this apply to basically all potential drug treatments as well?

But drug treatments have to jump through lots of hoops before they can be marketed which do not apply to psychological and behavioural interventions.

Obviously that is not to deny potential issues around ‘big pharma’, but ‘brain training’ requires no prior safety evaluation and presumably, as in the UK, the US has no system for recording adverse events arising from such intervention.
 
Separately, I'm pretty certain the second response from them is mostly written by an AI. The gratuitous bolding for emphasis, the section headers for each point, the summary at the end, the use of em dashes, and some of the phrasing used throughout are all common signatures of AI.
I want to second that. I’ve never seen a text supposedly written by someone look so suspiciously AI generated. There’s no effort to even hide it. It comes out literally with the exact same format, tone, register, vocabulary, and grammar as a stock Chatgpt answer.

(Here’s the text for reference):
Thank you for your continued engagement and for raising such thoughtful, detailed questions. It’s clear you care deeply about the integrity of care and communication in the ME/CFS and Long COVID community, and we appreciate the opportunity to clarify our clinical perspective and intent.

We want to be unequivocal: Bateman Horne Center does not recommend neuroplasticity programs as curative, primary, or standalone treatments for ME/CFS, Long COVID, or other post-infectious conditions. As stated in our Clinical Care Guide, neuroplasticity approaches are positioned as supportive adjuncts that may benefit a select group of patients with specific presentations of autonomic dysregulation—and only after improved post-exertional malaise (PEM) and illness stability is established.

To address your questions point by point:

  1. Evidence and Citations We agree that robust, disease-specific research is needed in this area. While studies specific to ME/CFS are limited, some foundational work on neuroplasticity and autonomic regulation exists (e.g., De Ridder et al., Brain, 2011; Sanabria-Mazo et al., JCM, 2020), as well as exploratory studies on neuroplasticity training in fibromyalgia and post-viral syndromes. We did not cite these directly in the Clinical Care Guide because the evidence is emerging, heterogeneous, and not yet conclusive for ME/CFS or Long COVID. However, we’re following this space closely and have noted several ongoing trials (e.g., neurostimulation and retraining programs for dysautonomia and fatigue syndromes). We will continue to update our recommendations as the literature evolves.
  2. Clinical Observations and Practitioner Experience At BHC, our providers do not deliver neuroplasticity programs themselves, nor do we prescribe them broadly. These programs are sometimes discussed in consultation with patients who are stable enough to explore non-pharmacologic nervous system regulation techniques. Clinical insights from both our team and peer clinicians include observations of select patients benefiting when these programs are used cautiously, paced flexibly, and implemented with strong self-monitoring skills and PEM awareness. This does not equate to formal clinical trials or universal endorsement.
  3. Defining “PEM Stability” “Improved PEM stability” refers to a patient reaching a point where symptom exacerbation patterns are better understood, tracked, and mitigated. This often includes reliable use of pacing strategies, a reduction in the frequency and severity of crashes, and the ability to engage in light cognitive tasks without immediate or delayed symptom rebound. It is not synonymous with remission and varies by individual.
  4. Risk Acknowledgement and SafeguardsWe recognize and share your concern regarding the potential harms of certain neuroplasticity programs—particularly those that deny the legitimacy of PEM. Our clinicians routinely advise patients to be mindful of their signs and symptoms of PEM and to stop at the onset.
  5. Reconciling Contradictory Messaging We agree that not all commercially available programs are appropriate for ME/CFS or Long COVID. We do not view these conditions as “retrainable” in the simplistic sense some programs suggest. Any patient pursuing such a tool are counseled explicitly, and followed closely—ideally with clinician input and clear pacing guardrails in place.
  6. NICE Guidelines and LP We support the NICE committee’s recommendation against the Lightning Process. We share their concerns about lack of transparency, coercive messaging, and the potential for harm. Our inclusion of neuroplasticity retraining is categorically not an endorsement of LP. Rather, we include a cautionary, limited-use perspective for patients with well-characterized dysautonomia, when implemented with clinical oversight and strong patient education.
  7. Known Risks and Outcome Variability We acknowledge the Norwegian ME Association’s report and similar surveys. These cautionary data points underscore why neuroplasticity programs should never be recommended broadly, prematurely, or without informed consent. Every intervention we recommend at BHC is personalized. We do not view lack of improvement—or worsening—with any treatment as patient failure. Response variability is a core reality in ME/CFS care.
  8. Ethical Concerns Around Commercialization This is a valid and important point. We are acutely aware of the financial vulnerability many patients face. As with any intervention we discuss the financial cost with the patient and encourage them to make their own informed choices. We do not receive any financial benefit from these programs, nor do we endorse any particular one.
In Summary:

  • PEM-sensitive care remains our central framework.
  • All interventions are evaluated individually, with shared decision-making, and adapted to each patient’s stability and comorbidities.
Thank you again for the opportunity to clarify this. We respect your advocacy and welcome continued dialogue that pushes all of us toward more thoughtful, safe, and patient-centered care.”

Tahlia Ruschioni, Deputy Executive Director, Education Director
 
Last edited:
My response:

Bateman Horne Center Thank you for your response. However, I find it unsatisfactory, as it does not address the caveats I mentioned in both my post and email.

It’s important to note that while many of these programs are framed as mind-body approaches—and not purely psychological—they often operate under the assumption that there is nothing physically wrong with the body. Instead, they suggest the brain is misinterpreting harmless bodily signals as harmful. Surely the BHC is aware that this assumption is false?

The hypotheses underlying these programs lack a solid scientific basis and, depending on the specific program, can both be physically and psychologically harmful.

Furthermore, there is no credible evidence supporting the effectiveness of these programs in ME, nor for the claimed role of neuroplasticity in directly affecting the pathophysiology of the disease. If you're now referencing neuroplasticity-based interventions again, where is the evidence for this neuroplasticity in ME?

It's therefore also crucial to distinguish between nervous system regulation techniques and neuroplasticity-based programs—they are not automatically the same. You make it seem as if they are.

If your goal is to responsibly inform patients and providers, it’s essential to present the full picture. That includes acknowledging that these approaches are considered alternative, lack any evidence base and are potentially harmful—just as you do when discussing CBT/GET in the Care Guide. As it stands, I believe this omission does a disservice to patients.
 
Hmm, I think it is probably an attempt to warn against the hard sell from brain retraining sellers. But it includes the sort of reasoning that the BPS people use to justify their idea that once someone has reached stability they can safely add 10% more activity, that is pacing-up. And the idea that clinicans can magically judge which patients are likely to be able to do these things safely and even benefit from them.

Yet we all know from our own bitter experience, or that of others, that seeming stability and knowledge of our PEM imposed limits can be thrown up in the air at any time and unexpectedly. Nobody can know whether adding brain retraining or more physical activity will set us back catastrophically until it is too late, and there is no good quality evidence that either pacing-up or brain retraining actually benefits anybody.
 
Back
Top Bottom