In my previous post, I mentioned that the Bateman Horne Center (BHC) has released a new clinical guide for ME and long-COVID, and that this guide includes a recommendation on brain training. I followed up on previous texts I had written on the subject and concluded by saying that I had contacted BHC to ask them to clarify the basis for their recommendation, as they do not cite any sources for this in their text.

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Today’s post contains BHC’s response to my questions and the further communication I have had with them.

2025-05-15 Answer from BMC  

Hello Mitt,

Thank you for reaching out with your question. Please see the following response from our provider team.

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“Thank you for your thoughtful question about our recommendation of neuroplasticity programs for autonomic nervous system dysregulation in our ”Clinical Care Guide: Managing ME/CFS, Long COVID, & IACCs.”

The neuroplasticity programs we reference are approaches designed to retrain and modulate the brain’s control over autonomic functions. These include limbic system retraining programs, mind-body techniques, and various bottom-up regulation approaches that aim to shift the nervous system from sympathetic dominance toward better parasympathetic balance.

While we don’t cite specific research in that section of the guide, our recommendation is based on the following:

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.

However, we intentionally present these approaches with important caveats:

  1. They should be viewed as ”supportive adjuncts rather than curative treatments” because current evidence doesn’t support them as standalone interventions.
  2. Timing is crucial – we recommend waiting until ”the patient has reached improved PEM stability” before beginning these programs, as the cognitive and energetic demands of neuroplasticity training could potentially trigger post-exertional malaise in unstable patients.
  3. Individual patient factors must be considered when implementing these approaches.
  4. Comprehensive clinical management remains essential and shouldn’t be replaced by neuroplasticity training alone.

We acknowledge that more research is needed in this area. The field of neuroplasticity for autonomic dysfunction in ME/CFS and Long COVID is still developing, with larger and more rigorous studies underway. We’ll continue to update our recommendations as stronger evidence emerges.

Thank you for helping us clarify this important aspect of our clinical guide.”

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Sincerely, Angela Linford, Community Engagement Lead

2025-05-17 I send follow-up questions to BMC

Hello again!

I really appreciate that you have taken the time to answer my questions. I have a few follow-up questions based on your responses.

  1. On one hand, you state that your recommendation is based on clinical experiences, but later you imply that there is research on this. You write: “We acknowledge that more research is needed in this area. The field of neuroplasticity for autonomic dysfunction in ME/CFS and Long COVID is still developing, with larger and more rigorous studies underway.” I wonder which studies you are referring to that have been published regarding neuroplasticity training for ME and long COVID, and why you do not reference these in your guide? Additionally, I would like to know which large and rigorous studies are underway regarding this.
  2. I also wonder about the clinical experience. You write: “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.” I wonder which “practitioners” you are referring to here? Are they working at Bateman Horne? Does this mean that you have conducted the DNRS program with patients and followed them during and after treatment?
  3. It is good that you clarify that there need to be certain prerequisites to start brain training, but I wonder what you mean by ”the patient has reached improved PEM stability”?
  4. I wonder how you view the risks associated with your recommendation of neuroplasticity training? You write: “…as the cognitive and energetic demands of neuroplasticity training could potentially trigger post-exertional malaise in unstable patients.” From what I understand based on patients who have shared their experiences with this type of training, there are also inherent risks in the theories taught in the programs. This involves elements such as gradually increasing activity, challenging PEM, and seeing setbacks/PEM as confirmation that one is doing the right thing, not that one needs to back off. They learn that a setback is good, as that is when one can best redirect the brain onto new paths. For me, this becomes incredibly contradictory when I see how you emphasize elsewhere in your guide that gradually increased activity is not an option when living with a condition that causes PEM (for example, in Chapter 15 under the heading Clinical Disclaimer).
  5. You state that neuroplasticity training “should be viewed as supportive adjuncts rather than curative treatments because current evidence doesn’t support them as standalone interventions,” but if the programs themselves claim that the method can cure people with ME and long COVID, or even claim that these individuals are not sick at all to begin with, your recommendation becomes directly inappropriate.
  6. I wonder how it is that you consider it appropriate to recommend neuroplasticity training while NICE advises against treating ME with this type of program in their guidelines? They specifically mention Lightning Process and programs that have emerged from it, but there are many similarities between LP and other brain training programs both in design and the issues that NICE raises. (I will include quotes from NICE guidelines at the bottom of till email).
  7. I wonder what your experiences are regarding long-term effects and potential risks of the treatment? Regarding LP, there are relatively extensive reports about patients who have worsened. One example is a survey from the Norwegian ME Association with nearly 2,500 participants, where two-thirds were estimated to have ME with PEM. In that group, over 60% of patients worsened due to LP. (Section 8.3, p. 45 and onward). On this page, there are personal stories about negative effects of LP [link].
  8. Finally, I wonder how you think about recommending a treatment that is largely sold to individuals by profit-driven companies? This concerns severely ill people who often also live in economic vulnerability, and who, through the companies’ success stories (which often promise a cure), are tempted to invest in expensive non-evidence-based treatments.

Thankful for your response!

I am including a link to my blog where I have previously written on the topic. There you will find both examples from the personal experiences of people with ME regarding the programs and what I have been able to find written about the programs.

Quotes from NICE:s guidelines:

”1.12.27 Do not offer the Lightning Process, or therapies based on it, to people with ME/CFS.” [link]

”Lightning Process Recommendation 1.12.27 Why the committee made the recommendation The committee discussed the limited evidence on the Lightning Process. They acknowledged that although some benefit was demonstrated and aspects of it, such as goal setting, practical examples and applications and peer support, were found to be helpful, the qualitative evidence on people’s experiences of the therapy varied and raised some concerns. In the qualitative evidence, some people reported negative experiences to do with the confusing nature of the educational component, the intensity of the sessions, and the secrecy surrounding the therapy. While in the SMILE trial children under 16 were accompanied by parents, the committee were particularly concerned about the reported secrecy of the Lightning Process in the qualitative evidence and the lack of public information on the implementation of the process in practice. The committee agreed the transparency of any intervention is important and noted that in the qualitative evidence it was reported that people had been specifically encouraged not to talk about the therapy. The committee agreed this was an inappropriate and unusual message to give, particularly to children and young people. The committee discussed concerns that the Lightning Process encourages people with ME/CFS to ignore and ‘push through’ their symptoms and this could potentially cause harm. In the qualitative evidence, some participants reported they had received advice they could do what they wanted. The committee noted they had made clear recommendations on the principles of energy management and this advice appears at odds with these principles. Overall, the committee considered there was a lack of clarity around the implementation of the Lightning Process in practice and some concerning issues raised in the qualitative evidence. As a result, the committee agreed the Lightning Process should not be offered to people with ME/CFS.”

”How the recommendation might affect practice The Lightning Process is not offered as part of current practice so this recommendation will maintain current practice” [link]

In-depth study of LP s. 380 onwards [link]

s. 397 summary

”Overall summary of non-pharmacological interventions for ME/CFS Overall, the evidence for non-pharmacological interventions as a treatment for ME/CFS is inconclusive with heterogenous treatment effects and uncertainty around the effect estimates being high. There is little evidence for most of the interventions identified and most of the evidence is not consistent showing some clinical benefit but also no clinical difference across outcomes and studies. The committee noted there was more evidence for CBT and graded exercise therapy, but this evidence had the same limitations. After discussing the clinical effectiveness of non-pharmacological interventions and people’s experiences and considering the reports from the young people and people with severe ME/CFS the committee agreed there is no current non-pharmacological cure for ME/CFS. The committee discussed the claims that have been made about cures for people with ME/CFS and lack of conclusive evidence for this. The committee were aware of interventions that are promoted as cures and there is often a financial cost to people with ME/CFS when these are pursued. To address this the committee made a recommendation to raise awareness that there is no current non-pharmacological cure for people with ME/CFS. In addition, the committee made ‘do not’ offer recommendations for CBT, therapy based on physical activity or exercise therapies, therapies based on the Lightning Process, and supplements to cure ME/CFS.”

2025-05-29 BHC’s answer to my follow-up questions 

(Bold text as in original)

“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 Safeguards We 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

Closure

I think you’ve already gotten the idea that there are things in BHC’s reasoning that I find problematic – and in the next post we’ll take a closer look at why.

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