In my last post, I used AI analysis to show that Bateman Horne Centre’s (BHC) arguments about brain training in their responses to me do not hold water. In today’s post, I will show that in their attempts to defend their recommendation of brain training, they also contradict their own guide.

Denna serie finns även på svenska. Du hittar den första delen via [denna länk].

As I wrote to BHC, I believe that there are inherent risks for someone living with post-exertional malaise (PEM) in the theories surrounding brain training and that there are parts of the training that are problematic. Including, for example, encouraging gradual increases in activity and challenging one’s limits, even deliberately triggering symptoms because it is good for changing pathways in the brain. BHC responds that they share my concern about certain brain training programmes, ‘particularly those that deny the legitimacy of PEM.’ At the same time, they stand by their recommendation.

In their initial response to me, BHC mentions that one of the reasons they recommend brain training in their guide is that some practitioners have reported good results from DNRS. They write:

”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 programmes 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.”

Since BHC says that they base their recommendation on the results from DNRS, among other things, I assume that they know what the method entails. But if they know what it entails, I wonder how they view the training included in the programme. Can it really be said to be safe for people with PEM?

In an interview from 2019, Annie Hopper [video] [transcription] talks about DNRS and what she calls ‘rehabilitation of the limbic system.’ She explains that the theory behind the method is that the limbic system has been damaged by one or more traumas (toxins, viruses, emotional stress, etc.), causing the brain to get stuck in a trauma response, a dysfunctional fight/flight mode. As a result, the brain incorrectly categorises things as dangerous and, because of this, creates symptoms.

Hopper says that her method works by creating new pathways in the limbic system using exercises that stimulate the brain’s plasticity. The goal is to restore what has been disrupted by the trauma and to enable people with a wide range of illnesses to recover. I understand Hopper to mean that the brain has ‘frozen’ and is “stuck” and that what you do in treatment is try to access the ‘reset button’ so that the brain restarts. Hopper says that illnesses she has seen benefit from the programme (including ME) have the same cause, namely that the limbic system is not functioning properly due to trauma.

In the interview, Hopper talks about what rehabilitation with DNRS involves. It is about shifting the focus from symptoms to rehabilitation. The individual’s will and motivation are decisive, and it requires daily training for at least six months through the individual’s own drive. It is about understanding how associations affect us and changing them. That you need to counteract negativity bias and count the gains from training, no matter how big or small they are. She also talks about visualising away chemical blockages in the brain and becoming aware of what is toxic in one’s environment. It is also about something she calls ‘incremental training,’ which I thought we would take a closer look at.

”I stands for incremental training. So, incremental training is a form of neural shaping that strengthens new neural pathways while desensitising old neural pathways. And that might involve slightly triggering a reaction to create a heightened neuroplastic state within the brain, which makes it easier for the brain to change. So what we do is it could be through small exposure therapy or some other form of trigger. But, and it’s not necessarily important to know what all of your triggers are, having said that. But if we can trigger the brain slightly, it actually activates neural pathways that are at play with the neural pattern itself.

So we can redirect all the real estate that’s involved in that reaction in that moment of time and move those neural pathways into a healthier pattern. So it’s actually, we take advantage of the fact that somebody might be reacting.”

To me, this sounds like the same type of hypothesis and exposure that the Oslo Chronic Fatigue Consortium talks about. Practising gradually facing things you have previously avoided due to fear.

When I google incremental training, the AI overview in Google confirms that it is about exposure and gradually expanding your comfort zone.

”Incremental training, a key component of some brain retraining programs like Dynamic Neural Retraining System (DNRS), involves gradually exposing oneself to increasingly challenging situations or activities while maintaining an elevated emotional state. This approach helps the brain adapt and create new, healthier neural pathways by challenging its comfort zone.” 

”Dynamic Neural Retraining System (DNRS) uses incremental training to desensitize individuals to situations that trigger stress or anxiety by gradually exposing them to these situations while encouraging visualization and other techniques to cultivate a calm and positive emotional state.” 

”In essence, incremental training is about intentionally and gradually expanding your comfort zone by repeatedly exposing yourself to challenges in a positive and controlled environment, encouraging the brain to adapt and create new, healthier neural pathways.” 

The sources Google has used are DNRS’s own website [link] and a brain training blog called Rewiring your wellness [link].

When I read the linked post from the blog, it becomes even clearer to me that this type of training is about pushing your limits, as they believe that no change happens within your comfort zone. It’s about getting your body used to a new level of activity and using heightened emotions to dampen any discomfort.

”There are many different ways to incrementally retrain your brain. It is helpful to understand the ”why” of what you are doing so that you can allow it to inform the ”how”. Incremental training or shaping, as Dr. Edward Taub calls it, is about pushing the edge of your comfort zone and helping the body and brain expand what it is currently comfortable or capable of doing. Change does not happen in the comfort zone, so we need to step slightly outside of that in order to change and grow. Then, we pair this slight discomfort with an elevated emotional state or really good distraction, and repeat it often. The repetition helps the brain and body get used to this new level of functioning, which eventually becomes our new comfort zone. Repetition allows the brain to create a different association with the trigger, so that it no longer evokes fear or stress, but rather peace & calm or elevated emotions instead.

Once we reach that point where the slight discomfort is no longer there and we are now used to operating at this new level more comfortably, we expand our challenge to the next level. This process continues until we no longer experience any challenge, and we can do what we want or go where we want.”

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. In the introduction to chapter four, which is devoted entirely to PEM, they describe how exercise intolerance affects people with ME and that there are documented pathophysiological abnormalities that explain why graded exercise therapy (GET) is contraindicated for people with PEM.

“For individuals with ME/CFS, exertion intolerance stems from documented abnormalities in energy metabolism at both cellular and systemic levels, not from deconditioning. This pathophysiological reality explains why graded exercise therapy (GET) is contraindicated in this population. Multiple studies have shown GET can trigger severe PEM episodes and potentially cause lasting functional deterioration in ME/CFS patients.₈₉,₁₈₃” (s. 13)

Later in the chapter, information about the pathophysiology of the phenomenon is explored in greater depth:

“4.2 Pathophysiology of PEM Impaired Energy Metabolism PEM is characterized by disruptions in aerobic energy production, leading to reduced oxygen utilization, mitochondrial dysfunction, and early anaerobic threshold activation. This has been demonstrated in 2-day cardiopulmonary exercise testing (CPET), which shows a reproducible drop in VO₂ max and work capacity on the second day—an abnormal response not seen in deconditioning.₈₈,₁₁₃,₁₅₇ Neuroimmune Dysfunction Inflammatory cytokines (IL-6, IL-10, TNF-α) increase following exertion, contributing to neuroinflammation and worsened symptoms.₂₃,₃₅,₉₉ Autonomic dysfunction (orthostatic intolerance, heart rate variability changes) impairs blood flow (perfusion) and oxygen delivery to tissues.₂₂,₁₇₄ Elevated oxidative stress and metabolic disturbances interfere with normal ATP metabolism. There may also be too much ATP being released by some cells, leading to the cell danger response.₁₂₂ These findings confirm that PEM is a distinct pathophysiological process, not simply ”fatigue” or ”deconditioning.” (s. 14)

The section on how to manage PEM emphasises that the basic principle is to stay within your limits to prevent crashes. Increased symptoms should therefore be avoided.

”The core principle of PEM management is staying within the “Energy Envelope” or the functional capacity to prevent crashes”. (p. 16)

Chapter 15 even includes a clinical disclaimer that warns against rehabilitation protocols involving a gradual increase in activity. It states that such activities can be harmful and that patients with PEM should not participate in them, whether they are physical or cognitive in nature.

“Clinical Disclaimer: Rehabilitation protocols that involve progressive increases in exertion—such as the Levine or CHOP protocols—are not suitable for patients experiencing post-exertional malaise (PEM).₈₉,₁₃₅,₁₈₃ Conventional therapeutic approaches like graded exercise therapy (GET)₁₈₁ and graded activity therapy (GAT) have been shown to be harmful to individuals with ME/CFS or Long COVID with PEM.₈₉,₁₃₅,₁₈₃ Patients with PEM should not be encouraged to gradually increase physical or cognitive activities—such as riding a stationary bike or performing progressively more demanding word recall tasks— as these methods can be ineffective and potentially detrimental.₁₈₃,₁₈₄ Instead, therapists must tailor their care plans to prioritize activity pacing, ensuring they accommodate the specific needs of people with ME/CFS and Long COVID with PEM, and avoid any strategies that rely on graded exertion.₆₁,₁₈₂,₁₈₃” (s. 54)

In the point where the BHC recommends brain training (chapter 7, p. 23) they write that the patient needs to achieve PEM stability before participating in such a program. But as far as I can see, this is the only time this term is used in the guide and in the chapter on PEM there is no explanation of what this means in practice. On the other hand, the conclusion (p. 17) states that pacing is the key to managing PEM and that the focus should be on staying within one’s limits, using structured rest and preventing crashes. 

The same message is echoed in the responses to me. They explain the concept as follows:

“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.” 

They also write:

”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.”

”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”

I hear what BHC is saying. I see that they are keen to ensure that brain training does not trigger PEM, and that the person should stop training if it does. But the problem is that what they are telling me and what they are writing about PEM, and how it should be handled, conflicts with the very core of many brain training programmes, including DNRS, which they themselves hold up as a good example.

To summarise:

  • Where BHC shows that there are pathophysiological abnormalities in the body that make gradually increased activity harmful and that people living with a disease that causes PEM should avoid it, brain training advocates say that you are not sick but that your brain is stuck in fight or flight mode, something that can be reversed by, among other things, exposing yourself to what causes the symptoms and getting used to a higher level of activity by gradually increasing your activity.
  • Where BHC says that it is crucial for someone living with PEM to stay within their limits and not trigger deterioration, brain training advocates argue that it is not possible to change within one’s comfort zone and that triggered symptoms are positive in the rehabilitation of the limbic system.
  • Where BHC believes that keeping track of and monitoring your symptoms can be positive for your well-being both in the moment and in the long term, brain training advocates believe that it is crucial to focus on things other than your symptoms in order to restore the brain.
  • Where BHC talks about emotions, even positive ones, triggering PEM, brain training advocates believe that participants in the training should consciously use heightened emotions to change the chemistry in the brain and mask discomfort.

It is extremely problematic that BHC does not understand, or is unwilling to admit, that the recommendation of brain training in their clinical guide puts people with PEM at risk and stands in stark contrast to their own strong advice on how patients and professionals should deal with PEM.

I have given the BHC the opportunity to read this series of posts in advance and comment. In the next post, which is also the last, you will read their comment.

Här hittar du alla inlägg samlade

Svenska:

Engelska:

Upptäck mer från The ME Inquiry Report

Prenumerera för att få de senaste inläggen skickade till din e-post.