I would like to start this series of posts by thanking the group of people around me who have helped me with various aspects of this series. From practical day-to-day care to reading, translation and necessary feedback. I could not have done this without you! Thank you ❤️

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

In early May, the Bateman Horne Centre (BHC), a non-profit centre for care, education and research on conditions such as ME, post-COVID and fibromyalgia, released a guide for healthcare professionals, based on their clinical work with ME and post-COVID. According to a Facebook post, the goal is to increase access to adequate care.

”For years, Bateman Horne Center has refined a clinical approach grounded in patient experience, deep expertise, and real-world practice. Today, we’re making that approach freely available — because increasing access to care is at the heart of everything we do. This Clinical Care Guide is BHC’s recipe. It distills decades of in-house clinical experience and hundreds of medical lectures into a practical, digestible roadmap that any provider—regardless of specialty or time constraints—can use to begin managing these complex conditions with clarity and compassion.” 

Another ME patient pointed out to me that the guide contains a recommendation about brain training.

In chapter seven, which deals with orthostatic intolerance and dysautonomia in people with ME and post-COVID, BHC goes through how this can be investigated and treated. The recommendation on brain training can be found on page 23 under the heading, ‘Non-pharmacological interventions”. It is short and reads as follows in its entirety:

”’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.’

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.

My first articles on brain training were published in October 2022 and were based on a podcast in which Swedish doctor Cecilia Tibell said that she recommended brain training in the form of DNRS and Gupta programmes to her patients with ME. In the podcast, she claimed that these methods were backed by good studies and that there was also Swedish research on people with long COVID. A closer examination of the ethics review application for the Swedish study revealed that it was still ongoing, but I also discovered that the researcher, Cecilia Söderberg-Nauclér, was listed as a quality guarantor for the effectiveness of the method on the DNRS website. The researcher wrote in the ethics review application that there was no previous research, but at the same time claimed, with reference to anecdotal evidence, that the method had a good effect on ME.

In my posts, I also shared the information I had found about the brain training hypothesis and method. It is difficult to assess the veracity of the patients’ stories, as part of the training encourages them to think and say that they are healthy and tells them that their symptoms are not due to illness but to a brain that is stuck in ‘fight or flight mode’. The method is based on ‘creating new pathways’ in the brain and thereby reducing symptoms. In one of my posts, you will meet a person who tried one of the methods and became much worse.

The ethics review application for the Swedish study does not describe post-exertional malaise (PEM) as part of the clinical picture, even though many people with post-COVID live with the consequences of this every day and brain training involves doing things that trigger symptoms and increase activity levels.

Via [this link] you will find what I have previously written about brain training.

It was difficult to find any further information about Cecilia Söderberg-Nauclér’s brain training study beyond what was available in the ethics review application and on the DNRS website, and after I wrote my posts, there has been silence. The information about the study and Söderberg-Nauclér’s statements on the DNRS website remain unchanged as far as I can see. No new studies have been added to the programme’s ‘Scientific Research’ page ,and the study, which is neither peer-reviewed nor published, on which they base their marketing, is still the same one that journalist David Tuller, who has been reviewing research on ME for ten years, tore apart as early as 2020.

I cannot find any information about published articles on brain training or neuroplasticity in post-COVID either on Söderberg-Nauclér’s page at the Karolinska Institute or online. When searching for studies on brain training and neuroplasticity at KI and in Söderberg-Nauclér’s name on the Clinical Trials website I find neither registered studies nor published results. This is despite the fact that it is a platform where KI researchers are expected to register their studies:

”If your study meets the criteria for a clinical drug trial, registrering i Clinical Trials Information System (CTIS) is required in accordance with EU Regulation 536/2014. If your study meets the criteria for a clinical trial, registrering i ClinicalTrials.gov or a similar approved clinical trial registry is required. Information to determine whether your study requires registration can be found on the website Kliniska läkemedelsprövningar och kliniska studier som kräver registrering”.” [link]

‘A researcher is not legally obliged to report results for clinical trials registered in ClinicalTrials.gov, unless there are requirements from research funders and regulatory authorities or it is an ’applicable clinical trial (ACT)” in accordance with FDA ACT 2007. However, Karolinska Institutet strongly recommends reporting results in ClinicalTrials.gov after the study has been completed to ensure transparency.” [link]

There is, of course, a possibility that the study is registered on another platform. KI writes that there are various platforms for registration, but it is on Clinical Trials that they have an organisational account and which the guidelines are based on.

The ethics review application for the study I reviewed in 2022 states that this study will be followed by a randomised controlled prospective clinical study. I therefore contact the Ethics Review Authority again to see if any new applications have been submitted since I last checked. However, there are still no new applications on this topic in Söderberg-Nauclér’s name.

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.

I wrote as follows:

”Hello!

I have been browsing through your new guide ‘CLINICAL CARE Managing ME/CFS, Long COVID, & IACCs’ and I have a question. https://batemanhornecenter.org/wp-content/uploads/2025/05/Clinical-Care-Guide-First-Edition-2025-1.pdf

In Chapter 7 on OI and dysautonomia (p. 23) under the heading ‘Non-Pharmacologic Interventions,’ you recommend, among other things:

‘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.’

As far as I can see, there are no references regarding this recommendation of neuroplasticity programs in your material, and I wonder what type of programs you are referring to and what research you base this recommendation on?

Best regards,

In future posts, you will be able to read BHC’s response and the communication that followed.

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.