‘I Want Everyone to Have It, and Everyone to Be on It’: A Feasibility Study of the Transforming Long Covid Intervention, 2026, Belton et al

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‘I Want Everyone to Have It, and Everyone to Be on It’: A Feasibility Study of the Transforming Long Covid Intervention

Sarahjane Belton, Hannah Goss, Enda Whyte, Noel McCaffrey, Sophie Gibney, Kate Sheridan

Background
An understanding of the nature of long Covid (LC) is evolving, with recent evidence highlighting the role of increased sympathetic activation and decreased parasympathetic response.

Building upon this emerging science, the ‘Transforming Long COVID’ (TLC) programme was developed to support participants in their recovery by (i) introducing education on the neuroscience underpinning persistent symptoms (with a particular focus on the autonomic nervous system) and (ii) the development of self-management strategies to support recovery. The aim of this study was to examine the feasibility of the TLC programme with a cohort of people significantly affected by LC.

Methods
Seventeen participants took part in the 8-week TLC programme which comprised of seven content sessions and one discussion (Q&A) session.

Participants completed survey scales (investigating anxiety, pain-related interference, pain catastrophising, sleep disturbance and fatigue) at baseline, immediately post-programme (at 8 weeks), and retention (at 13 weeks). Participants also took part in focus group interviews to investigate their experiences of the programme.

Results
Fourteen participants (82%) attended at least six of the seven TLC content sessions. Decreases in mean values over time were observed across all measures, indicating a positive (non-significant) change.

Participants reported an increase in understanding of LC, new hope for recovery, belief that they now had a realistic pathway for recovery, validation of their experiences and symptoms, meaningful improvements in function, and enhanced ability to respond to and attenuate physical symptoms.

No adverse events were reported. Participants highlighted a number of programme strengths, along with some potential areas for improvement.

Conclusion
The TLC programme was shown to be feasible based on engagement, adherence, acceptable completion of surveys, and no adverse events. Study findings point to the potential for this programme to be refined, trialled and evaluated with a larger sample.

Patient or Public Contribution
Four people (living with LC, ME/CFS, chronic migraine and chronic Lyme, fibromyalgia, and centralised pain syndrome), who have experience of applying a recovery approach aligned with the TLC programme, acted in a PPI (Public and Patient Involvement in research) capacity on this study.

In addition, the lead author has personal experience with the illness, and developing the recovery approach, which helped inform programme structure and development [1]. These individuals provided advice and guidance on the potential structure for the group programme, course duration, tool selection, and language and wording of the programme and materials.

Further detail is provided in the Supplementary Materials.

Web | DOI | PDF | Health Expectations | Open Access
 
The abstract said:
In addition, the lead author has personal experience with the illness, and developing the recovery approach, which helped inform programme structure and development
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The lead author, Sarahjane Belton, Associate Professor of Physical Education, has written the following about their "recovery approach" (paywalled):

After years of torture, I beat long-Covid. Here’s how

The body can get stuck in a state of overreaction or faulty signals, but there is a solution. Our brains can be trained to let go of the symptoms
Click to expand...

www.independent.ie

After years of torture, I beat long-Covid. Here’s how

Long-Covid is an illness that you can’t really understand unless you’ve lived it. For me, the physical pain was unrelenting, unbearable, beyond a form and intensity that I could have imagined possible. Nor did sleep come to rescue me; it abandoned me to the pain, so that it was a 20-22-hour...
www.independent.ie www.independent.ie
 
Sarahjane Belton has also written this article:

This study highlights the detrimental cost, both personally and financially, of the ongoing use of the biomedical model of care in the treatment of long COVID.
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‘The Second Arrow’: A Collaborative Autoethnographic Exploration of What Can Be Learned From One Long COVID Journey - PMC

Long COVID is a complex multisystem illness with multiple relapsing‐remitting symptoms, which can vary in severity and impact people's daily lives. This study utilises the first author's experience of falling ill with and recovering from long COVID ...
pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov
 
Impressively mediocre, it has all the hits. A 'feasibility' trial, which is unnecessary because this kind of vibes-based wellness coaching is common, is in fact the standard, where the title might as well be a marketing brochure, even though in the abstract they admit it had null results outside of weird vibes stuff (being able to fill in a questionnaire showing that someone understands the teachings of Scientology does not make it correct or useful) and it's published in Health expectations.

It even involves dismissing scientific medicine, one of the most successful things humanity has achieved, as a bad thing, despite invoking "the neuroscience" as a vague, bullshit vibes-based validity. This might the most perfect biopsychosocial evidence-based medicine thing ever. I think it's safe to say that the systems that allow this to be produced can be shut down entirely with no expectation of losing anything of value. Just literally shut it all down and fire everyone involved, they have proven themselves to be incapable of meaningful contributions.
 
Here's the intervention session by session (from the supplementary info file):

Session 1

This first session has the goal of introducing participants to the relationship between the brain and the body, and the significant role the brain plays in our normal daily experience. Examples are given from the medical literature of the brain making predictions based on information available, but making mistakes (Schubiner, 2022). The concept of neuroplasticity is introduced, and the role neuroplasticity can play in perpetuating persistent physical symptoms is discussed (Gordon & Ziv, 2021; Schubiner, 2022). Goal setting is discussed. Participants are introduced to a breathwork exercise as a self-regulation tool, are also lead through a somatic awareness exercise, and given access to an associated audio track after the session.
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Session 2

Participants are introduced to the ‘FIT assessment criteria’ developed by (Schubiner, 2022) which allows people to self-determine the extent to which symptoms they are experiencing may or may not be driven by neural circuits. The role of the autonomic nervous system in activating a ‘fight or flight’ stress response, and the role and implications of a fight or flight response are explained (Gordon & Ziv, 2021; Schubiner, 2022). Participants are lead through a Somatic Tracking practice (Gordon & Ziv, 2021), and given a guided audio track to use in their own time.
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Session 3

‘Brain talk’ is introduced as a strategy which can be used in real time to rewire neural circuits, and reassure the brain of the safety of symptoms or situations experienced (Gordon & Ziv, 2021; Schubiner, 2022). Scientific research demonstrating that use of self-affirmations produces physical changes in brain regions is presented (Cascio et al., 2016). Polyvagal theory is introduced (Dana, 2020; Porges, 2017), it’s relevance to neural circuit disorders/ANS dysfunction is explained, and implications for how we can apply the theory in our approach to recovery form long COVID is discussed. Participants are lead through a somatic awareness body scan practice.
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Session 4

The term Nocebo is introduced and explained, and the implications for long COVID symptom persistence is discussed. The power and importance of fear and beliefs is discussed, and expanded upon with regard to physical and other daily activities people wish to reintegrate to their lives. Visualisation is introduced as a strategy which can be used to reduce the fear associated with an activity, and help to develop a capacity to slowly reintegrate activities into our daily lives. Extended exhale breathwork and somatic grounding strategies are introduced as a way of calming ANS arousal response. Participants are introduced to, and lead through, the key steps for successful and impactful imaginal exposure practice.
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Session 5

The role that habitual thought patterns can play in reinforcing neural networks is discussed, and strategies to identify and respond to thought patterns are introduced. The role of emotions in also reinforcing neural networks is recapped, and further discussed. The three levels of mind are explained, and a model demonstrating how emotions can reinforce physical symptoms is introduced (Donnino et al., 2023; Gordon & Ziv, 2021; Schubiner, 2022). The importance of learning to notice, feel, and allow emotion is discussed. Expressive writing is discussed as a tool that may be of benefit in opening to and allowing emotions. Following the session participants are given a Befriending Emotions guided audio track, a Befriending Sensations guided audio track to use in their own time. They are also given a guideline for Expressive Writing, and a guideline for application of a strategy for working with habitual thought patterns.
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Session 6

The importance of ‘outcome independence’ (Gordon & Ziv, 2021) is reinforced, with strategies for allowing and responding to pain or other symptoms as they arise being recapped and underlined. Visualisation and imaginal re-engagement strategies are recapped, and the potential of, when ready, gradually reengaging with an activity that has been out of reach (e.g. household, social, or physical) is introduced, and the importance of very gradual paced progression underlined. Participants are lead through a ‘Best Possible Self’ visualisation exercise (adapted from (Peters et al., 2010)). The role and importance of beliefs is discussed. Following the session participants are given a sleep focussed somatic awareness guided audio track to use in their own time.
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Session 7

The inevitability of flare-ups, set backs, and relapses as we progress with recovery are discussed (Gordon & Ziv, 2021), and the potential for viewing these as an opportunity to apply the various tools and strategies to do some very powerful rewiring of neural circuits is explained The need to move very slowly and gently in progressing activities is reinforced; gently stretching boundaries, rather than forcing or pushing. The importance of patience, resilience and self-compassion throughout the recovery process are underlined. After the session participants are given access to a guided somatic future-focussed audio track to use in their own time.
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Session 8

This session was an opportunity for participants to meet each other and the course lead in smaller informal groups of 5 - 6, to discuss challenges or issues with regard to their illness, applying the course content to their daily lives, using the various tools and strategies that were learned, and to share successes and strategies that had been effective for them so far. Following this session participants were provided with a booklet giving an overview and recap of the various tools covered in the course as they related to fatigue, post-exertional malaise, and chronic pain, and providing some examples and context recapping on how they can be implemented.
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So, just like what pwME have been served up by alternative and mainstream healthcare for decades.
 
Liie said:

‘The Second Arrow’: A Collaborative Autoethnographic Exploration of What Can Be Learned From One Long COVID Journey - PMC

Long COVID is a complex multisystem illness with multiple relapsing‐remitting symptoms, which can vary in severity and impact people's daily lives. This study utilises the first author's experience of falling ill with and recovering from long COVID ...
pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov
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This seems to be basically another Garner-like story, although this person seems to have been worse of than Garner for a while. They think that their symptoms are because stress, fear, focus on symptoms, anticipation and avoidance, the standard BPS theory. They think that got better by some kind of cognitive-behavioral technique.

There seems to a some number of people who actually think such techniques have helped them. Do they think this because a) they had a spontaneous recovery which they ascribed to the technique, or b) the technique actually helped those people (even if it wouldn't help many others)?

It doesn't seem unreasonable to me to think that there are some people for whom b is true and the technique actually worked.

I think the big problem with the BPS theorists is that they want to treat EVERYONE with LC/ME/CFS according to the PBS theory.

If the BPS clinicians started their treatment of a patient by first trying to find out whether the patient has a lot of fear and avoidance, and the other things, and asked the patient whether the BPS theory fits them, then it wouldn't be so bad. Maybe it would help some people.

But instead the BPS clinicians seem to think that they must use all possible means to convince the patient of their theory, and they can't confess to the slightest possibility that there might be a biomedical illness in many people.

That's the big problem, I think.

Sorry, I'm rambling, I am too brain fogged to write this long things. I shouldn't try to do it. Now I have no energy to read through it and clean it up, sorry.
 
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Liie said:
It doesn't seem unreasonable to me to think that there are some people for whom b is true and the technique actually worked.
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I don’t know. You see the same thing with people swearing by supplements or drugs which seems unlikely to work. I think just we humans like to attribute whatever “treatment” we were trying at the time to recovery.
 
Liie said:
The lead author, Sarahjane Belton, Associate Professor of Physical Education, has written the following about their "recovery approach" (paywalled):



www.independent.ie

After years of torture, I beat long-Covid. Here’s how

Long-Covid is an illness that you can’t really understand unless you’ve lived it. For me, the physical pain was unrelenting, unbearable, beyond a form and intensity that I could have imagined possible. Nor did sleep come to rescue me; it abandoned me to the pain, so that it was a 20-22-hour...
www.independent.ie www.independent.ie
Click to expand...
This shows how detrimental the ubiquity of this BPS rebranding as “neurological” brain retraining BS is.

It turns people who have extremely common natural recoveries, into fierce advocates for the technique. Because they are told that what they were doing at the time is the reason they recovered and thus must have “figured it out”. So we get loads of Garners. The culture is exactly like this in these brain retraining circles. Nearly all of the practitioners say they were ill themselves and have “figured it out”. Of course people who recover coinciding with usage of these techniques are then wanting to be practitioners and “help” themselves.

And once you’ve created a foundational pillar of your identity and security on “I had this illness and figured out a way to heal myself”. No amount of evidence is going to break that deeply ingrained narrative, even if you are a “scientist” by training. Especially when there exist echo chambers reinforcing it.

So in essence, they are continually recruiting the next “wave” of advocates and “practitioners”. This ideology (edit: business) is self sustaining.
 
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Yann04 said:
I don’t know. You see the same thing with people swearing by supplements or drugs which seems unlikely to work. I think just we humans like to attribute whatever “treatment” we were trying at the time to recovery.
Click to expand...
Like I mentioned several times, the first year in the Long Covid community was pretty much filled with this. With the same certainty that this is what helped them. There were so many posts featuring "supplements stacks", some made-up by patients themselves, some pushed by clinicians. Then less so the next year, and pretty much dead since then. Most now accept that it was just time. That's the plausible, reasonable explanation after all, backed by loads of studies showing high rates of natural courses, far higher than any trial has ever managed.

This here is of course made worse by the manipulative aspect, where people will obviously exclaim themselves to be better than they actually feel. It should have a far higher burden of evidence for this alone, and yet it doesn't do any better than any random bunch of supplements.

One ironic thing from one of the treatment phases is the importance of beliefs. Beliefs are definitely massively important, but in the end less so those of patients than professionals, who would mock woo treatments they don't believe in if they were presented exactly like this. Their own beliefs are doing all the work of pretending this isn't made-up nonsense.
 
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