“Pacing does help you get your life back”: The acceptability of a newly developed activity pacing framework for chronic pain/fatigue, 2021, Antcliff

Andy

Andy

Retired committee member
Abstract

Objectives
We have developed and feasibility tested an activity pacing framework for clinicians to standardise their recommendations of activity pacing to patients with chronic pain/fatigue. This study aimed to explore the acceptability and fidelity to this framework in preparation for a future trial of activity pacing.

Design
Acceptability and fidelity were explored using semi‐structured interviews. Data were analysed using framework analysis.

Participants
Patients who attended a rehabilitation programme for chronic pain/fatigue underpinned by the framework, and clinicians (physiotherapists and psychological wellbeing practitioners) who led the programmes.

Results
Seventeen interviews were conducted, involving 12 patients with chronic pain/fatigue and five clinicians. The framework analysis revealed four deductive themes: (1) Acceptability of the activity pacing framework, (2) Acceptability of the feasibility study methods, (3) Processes of change and (4) Barriers and facilitators to activity pacing; and one inductive theme: (5) Perspectives of patients and clinicians.

Conclusions
The activity pacing framework appeared acceptable to patients and clinicians, and adherence to the framework was demonstrated. Processes of behaviour change included patients' regulation of activities through activity pacing. Barriers to pacing included work/social commitments and facilitators included identifying the benefits of pacing on symptoms. Different perspectives emerged between clinicians and patients regarding interpretations of symptom‐contingent and quota‐contingent strategies. The framework recognises fluctuations in symptoms of chronic pain/fatigue and encourages a quota‐contingent approach with flexibility. Future work will develop a patient friendly guide ahead of a clinical trial to explore the effects of pacing.

Open access, https://onlinelibrary.wiley.com/doi/10.1002/msc.1557
 
This is branding and marketing. They didn't "develop" a damn thing, patient communities have been sharing this stuff for decades and we were massively maligned for it.

I hereby claim I have developed an entirely new thirst-quencher system. I call it wet. It's not water, it's wet and it's newly-developed. It does the same thing, but no one has thought of this before so give me credit and money every time you use this new thing I developed.

Seriously this is massively delusional. Either that or everyone is well aware that all of this is BS branding and just play along. Both options are equally terrible. The line between this and taking credit for the Sun coming up in the morning is the thinnest of voids.
 
PWP = Psychology well being practitioner https://www.healthcareers.nhs.uk/ex...es/roles/psychological-wellbeing-practitioner

I wonder how much this project cost, and now they know it's acceptible how many thousands will be spent on the full clinical trial? How will they measure, objectively,

"Eligible patients included those with an initial GP/hospital consultant referral with diagnoses of chronic low back pain, chronic widespread pain, fibromyalgia or myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), with symptoms ≥3 months"
Ineligible patients included those with severe cognitive functioning issues.

What is your take on this research @PhysiosforME?
 
MEMarge said:
PWP = Psychology well being practitioner https://www.healthcareers.nhs.uk/ex...es/roles/psychological-wellbeing-practitioner

I wonder how much this project cost, and now they know it's acceptible how many thousands will be spent on the full clinical trial? How will they measure, objectively,

"Eligible patients included those with an initial GP/hospital consultant referral with diagnoses of chronic low back pain, chronic widespread pain, fibromyalgia or myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), with symptoms ≥3 months"
Ineligible patients included those with severe cognitive functioning issues.

What is your take on this research @PhysiosforME?
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Thank you for sharing. Will read v soon and comment. Not been a fan of her work so far....
 
PhysiosforME said:
Not been a fan of her work so far....
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Yes, it's probably fair to say that collectively we aren't fans either

Engaging stakeholders to refine an activity pacing framework for chronic pain/fatigue: A nominal group technique -Antcliff, Keenan et al Nov 2019

Survey of activity pacing across healthcare professionals informs a new activity pacing framework for chronic pain/fatigue, 2019, Antcliff et al

Recruiting: Developing an Activity Pacing Framework: Feasibility and Acceptability, Antcliff et al

Cognitive factors are associated with disability & pain, but not fatigue among physiotherapy attendees with persistent pain & fatigue, 2019, Antcliff

Symptoms of chronic fatigue syndrome/myalgic encephalopathy are not determined by activity pacing when measured by the chronic pain coping inventory.

Activity pacing: moving beyond taking breaks and slowing down (Antcliff et al. 2018)

ETA: Looking at her Researchgate list of publications, she has been wasting her time on this for a fair few years, https://www.researchgate.net/profile/Deborah-Antcliff
 
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Can we move beyond pacing, activity management and behavioral approach? Can we move beyond the self-management stuff and instead move on to understanding the disease, using a bench to bedside back to bench approach? I have a bad case of copingitis. I just can’t do it anymore.
 
Milo said:
Can we move beyond pacing, activity management and behavioral approach? Can we move beyond the self-management stuff and instead move on to understanding the disease, using a bench to bedside back to bench approach? I have a bad case of copingitis. I just can’t do it anymore.
Click to expand...

Absolutely, no more money should be spent on this. We need to understand the physiology and biochemistry of the pathology.
 
Has there ever been a paper published where the authors enthusiastically claim to have developed a new treatment approach, then conduct interviews with patients on acceptability and where the patients say: "no, thanks this isn't very useful."

Not sure if papers like this one count as research. It feels more like the customer satisfaction surveys that commercial companies do.
 
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