Codeveloping a Novel Intervention for People With Post-COVID Condition: The Balance-ACT Study, 2025, Felton, Chalder+

SNT Gatchaman

SNT Gatchaman

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Codeveloping a Novel Intervention for People With Post-COVID Condition: The Balance-ACT Study
Lily Felton; Michail Kalfas; Debbie Brewin; Carole Beckwith; Tasbiha Khan; Caroline Jolley; Nicholas Hart; Emma L. Duncan; Timothy Nicholson; Oliver Witard; Julie Moore; Alan Metcalfe; Gerrard F Rafferty; Trudie Chalder

INTRODUCTION
Some people experience persistent symptoms, such as fatigue, brain fog and breathlessness, long after the onset of COVID-19 infection. This is known as the post-COVID syndrome (PCS). We developed a unique and holistic psycho-physiological intervention that integrates Acceptance and Commitment Therapy (ACT), a structured talking therapy, with principles of homeostasis. This aims to provide targeted support and treatment strategies for effectively managing the long-term repercussions of the condition and improve patient outcomes.

METHODS
This empirical study was informed by theory and other research strands. These strands included a qualitative study of people with lived experience, a scoping review of interventions for fatigue (including rehabilitation) and insights from a patient and public involvement (PPI) group. The PPI group were actively involved in the development of the intervention, manuals and overall study management, ensuring it was relevant, ethical and aligned with patient preferences and needs.

RESULTS
The qualitative study uncovered the tangible contexts in which the intervention would be implemented, and the attraction of Balance-ACT for those living with PCS. People living with PCS (n = 19) and health care professionals (HCPs; n = 12) provided overall endorsement for the intervention. Through an iterative process, their feedback, alongside input from the PPI group, informed the development of key materials, including a therapist manual, participant handbook, mindfulness recordings and an animation. Therapists were trained, and a novel fidelity measure was developed to ensure adherence to Balance-ACT principles.

CONCLUSION
We used an iterative approach to develop the Balance-ACT intervention, which was acceptable to patients and HCPs. Subsequent research will examine the efficacy of Balance-ACT.

PATIENT AND PUBLIC CONTRIBUTION
This article represents work conducted as part of the Balance-ACT project. People with the post-COVID condition (PCC) were involved throughout all aspects of this study, in line with the National Institute for Health and Care Research framework, and contributed in several key ways. It ensured the research captured a diverse range of illness experiences. The study design was refined and addressed potential barriers to engagement. Patient-friendly language was used to improve accessibility, making the study more inclusive. Additionally, the outcome measures were informed by patient input to enhance their relevance. Finally, dissemination was guided to ensure that the findings were both useful and accessible, using clear language in reporting and incorporating feedback from patient representatives on drafts to ensure clarity.

Link | PDF (Health Expectations) [Open Access]
 
After reading the article and the supplementary information I'm still not sure what exactly this approach consists of. It seems to mix a wide variety of ideas and reads more like promotional material than a technical document.

Also, I wonder why acceptance is good when it's proposed by a therapist but maladaptive when it's an idea coming from patients. Isn't pacing about accepting one's condition and limits?
 
Andy said:
Well, looking at these images it is based on the same BPS garbage.

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It’s just disability bigotry displayed in chart form for us all to see the false beliefs/ faulty thinking/ belief system being sold (other term for this = propaganda)

Not a model. These people have tested and failed whether any of these ‘if you calm down a bit love and behave right’ ideas so beloved actually translate to what they state as truisms in their supposed model in the target population

They also never test their model or assertions and if they do they don’t have null hypotheses and won’t take no for an answer. Which is just denial.

And that’s what these people won’t get ie the bigotry - they think it’s ok to just treat it like it isn’t an illness as an assumption . I’m not sure this crud works as ‘wellness’ for well people anyway (they never test that properly and goodness knows where the original of their ideas really comes from) but it’s the same disgusting BS of if people act and just do this nonsense list of stuff we’ve come up with to claim is ‘behaving right’ then their health will follow. But my goodness it never crosses their mind - still, after all the harm this area has done- that it should be that if they are still unwell then there is something else ie an illness causing it. Which should be the actual bug they are looking into and making themselves knowledgeable about

The attitude of these people now so many decades and so much scientific pointing out of how wrong and disproven it is just makes me distraught frankly - it’s the most oppressive document of bigotry and enforcing this as a tyranny on us so we can’t exist and are out in danger all the time. And yet it’s also a document of themselves dekudedly denying responsibility needing to be taken by themselves for the impact of making their money by spreading this about others without serious grown-up care that doing so without thinking and checking properly could be disgustingly destructive and harmful to such human beings

It feels like enough science on the last branding of this ideology proved the harm and wrongness of it enough that if they aren’t offering proper methodology to show something changed as proper proof then this stuff should be seen for legal purposes as the propaganda that it is and the harm it causes in preventing people from having an existence or being accepted should be absolutely something they are being expected to answer for . It’s been proven now that spreading such deep misinformation isn’t a laugh and isn’t harmless and certainly isn’t ‘help’ - which to me anyone claiming that word is chosen willfuly ignorant and being callously indifferent to the harm they are inflicting in a way that should no longer be acceptable.

If you think you get to say what you want fine but then you should be expected to be held accountable for every bit of harm and consequences that causes those you are doing it to - and it goes by their telling you the harm not bs not tested nonsense methods and pretend models you don’t test somehow being used to pretend ‘it’s a debate’. Like the whole ‘it wasn’t me being vicious they are just too sensitive’ being a ‘belief system’ shouldn’t stand for much either without evidence and testing

And yet I guess the plan with this is that those claiming to care about health/mental health are actually going to try and train those harmed by the bigotry they spread which harms them to ‘think like a bigot and self-bigot’ - just like certain personality types will at their worst try and persuade you of their distorted thinking and why ‘you just have to understand everyone thinks this way’ means instead of (if it were true) that bigotry being corrected the problem is the bigoted just not seeing and going along with ‘being the problem and understanding they deserve it’ . It’s mind blowing
 
Yann04 said:
You’re trying to tell us the brilliant theory come up the UK medical establishment that
“When your ill it’s cause you think you’re ill
And when you get better it’s cause you stop thinking you’re ill”

Isn’t well evidenced!??
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Only if someone thinks of the (tongue in cheek) Michael Winner ‘calm down dear [it’s only a commercial]’ car insurance ads as evidence of hysterical women / the ‘over sensitive’ to getting their car hit, instead of other stuff:
 
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paper says said:
The PPI group comprised seven members, five on the advisory group, all recognised as experts by experience. They contributed to the qualitative research, provided input on the intervention development and provided written and verbal feedback on the manual. One member is part of the trial steering committee, and another (C.B.) sits on the Trial Management Group (TMG). The manual, participant handbook and training programme were iterative, involving continuous refinement and feedback. All documents were circulated in the TMG and shared with C.B., who provided key input and attended training sessions to advise on participant experience. Ethical approval was granted by KCL REC [23/LO/0941].
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If C.B. Is the co-author Carole Beckwith, she is only credited with contributions to visualization and conceptualization.

I also wonder what use the PPI group was if the documents were only circulated with two of them!
 
This is just the talking therapy industry attempting to create a market for talking therapies by trying to persuade the public that poorly understood medical conditions are psychosomatic and therefore a valid target for talking therapies. When the medical conditions are poorly understood it is harder to disprove these claims and uncontrolled bullshit clinical trials will be more likely to be tolerated because having nothing is often perceived as worse than having a placebo therapy.

I don't exclude that there may be some benefit from this, since they insert so many different ideas into the programme. The benefit may also be undone by the underlying negative messages towards the patients, such as the idea that they are thinking themselves sick. Some of them could believe it and feeling like a failure when they don't succeed in reversing their disability, while others could feel betrayed and exploited when they finally realize that there was never any hope of this working and they just lost time and energy that would have been better spent adjusting to the reality of the disability.

When the talking therapy people complains about activists, do they ever seriously ask themselves how THEY, through their own behavior, are causing people to become activists?
 
The paper said:
Balance ACT targets the modifiable mechanisms (e.g. physiological, behavioural, cognitive and emotional responses) to influence functioning, long COVID symptoms and quality of life
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It obviously does no such thing. Just the same delusional garbage in a loop.

They sure go to great lengths to pretend that this is a novel thing developed along with patients, when it's none of those things.

Looking at the "Influences on Long COVID, distress and quality of life", they are all psychobehavioral, none of them biological, and the only social aspect is clearly a consequence of. So much biopsychosocial. The only ingredient in button soup is a single button, and nothing more.

And because they don't bother making sense, they put "Symptom focusing" under influences, by which they mean problems, and "Self-monitoring" and "Self-awareness", under solutions. Just zero interest in even pretending to make sense. The same Goldilocks nonsense where only they know how to explain to us how to do it right.

Their model is the traditional bullshit they've always tried to sell, all started by some mythical "fear response". This is every bit as bad as what RFK Jr and his cronies are doing. Everyone involved in this should be ashamed of themselves and change careers.
 
Hoopoe said:
This is just the talking therapy industry attempting to create a market for talking therapies by trying to persuade the public that poorly understood medical conditions are psychosomatic and therefore a valid target for talking therapies. When the medical conditions are poorly understood it is harder to disprove these claims and uncontrolled bullshit clinical trials will be more likely to be tolerated because having nothing is often perceived as worse than having a placebo therapy.

I don't exclude that there may be some benefit from this, since they insert so many different ideas into the programme. The benefit may also be undone by the underlying negative messages towards the patients, such as the idea that they are thinking themselves sick. Some of them could believe it and feeling like a failure when they don't succeed in reversing their disability, while others could feel betrayed and exploited when they finally realize that there was never any hope of this working and they just lost time and energy that would have been better spent adjusting to the reality of the disability.

When the talking therapy people complains about activists, do they ever seriously ask themselves how THEY, through their own behavior, are causing people to become activists?
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Tbh I think it’s just another sign/part of the personality type that would delude to belief this or push it about another person that should anyone critique (probably even those technically ‘on the same side’ like colleagues included) then name-calling /man-not—ball ensues as they aren’t keen on considering the content of what is being said and faux outrage (or real if someone believes noone should question them) is a common tactic just used to warn others who might agree from doing so or thinking about ever commenting in the same way themselves.
 
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