Trial Report Effect of Personalised Pacing & Active Rest Rehabilitation Programme on Post-Exertional Symptom Exacerbation & Health Status in Long COVID,'24,Godfrey

[Dolphin]

https://www.preprints.org/manuscript/202412.0230/v1

Effect of a Personalised Pacing and Active Rest Rehabilitation Programme on Post-Exertional Symptom Exacerbation and Health Status in Long COVID (PACELOC). A Prospective Cohort Study

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Belinda Godfrey 1, Jenna Shardha 1, Sharon Witton 1, Rochelle Bodey 1, Rachel Tarrant 1,
Darren C Greenwood 2,3 and Manoj Sivan 1,4,5,*

1 Leeds Long COVID Community Rehabilitation Service, Leeds Community Healthcare NHS Trust
2 Leeds Institute of Cardiovascular and Metabolic Medicine, University of Leeds
3 Leeds Institute for Data Analytics, University of Leeds
4 National Demonstration Centre of Rehabilitation Medicine, Leeds Teaching Hospitals NHS Trust
5 Academic Department of Rehabilitation Medicine, Leeds Institute of Rheumatic and Musculoskeletal
Medicine, University of Leeds
* Correspondence: m.sivan@leeds.ac.uk

This version is not peer-reviewed

Preprints on COVID-19 and SARS-CoV-2

Abstract

Background:

Post-COVID Syndrome or long COVID (LC) is a novel public health crisis and, when persistent (> 2 years), is a long-term condition. Post-exertional Symptom Exacerbation (PESE) is a characteristic symptom of LC and can be improved in a structured pacing rehabilitation programme. Aims: To evaluate the effect of an 8-week structured World Health Organisation (WHO) Borg CR-10 pacing protocol on PESE episodes, LC symptoms and quality of life in a cohort of individuals with long-term LC.

Methods:

Participants received weekly telephone calls with a clinician to discuss their activity phase considering their PESE symptoms that week. They completed Leeds PESE questionnaire (LPQ), C19-YRS (Yorkshire Rehabilitation Scale) and EQ-5D-5L at the beginning (0 week), end of programme (8 weeks) and at final follow-up (12 weeks).

Results:

Thirty-one participants (duration of LC symptoms 29 months) completed the programme. The PESE episodes decreased in number each week (15% fewer each week, 95% CI: 11% to 20%, p<0.001), were of shorter duration, and of milder severity each week. The changes in C19YRS symptom severity and functional disability (0-12 weeks) were statistically significant but not clinically significant. The EQ5D-5L index score change was not statistically significant.

Conclusion:

A structured pacing protocol effectively reduced PESE episodes frequency, duration and severity but did not produce clinically significant changes in LC symptoms, reflecting the long-term nature of the condition in this cohort.

Keywords: long COVID; post COVID syndrome; COVID-19; Post Exertional Symptom Exacerbation; pacing; rehabilitation

https://twitter.com/user/status/1865225611997753407

 

[NelliePledge]

No clinically significant changes in symptoms

gosh what a surprise

 

[rvallee]

I don't think you can realistically test the impact of pacing/convalescence without having fully catered for living conditions, and on a longer term than just 2 months. What counts for us as high exertion would be in the "lazy day doing nothing" range for our healthy selves.

Poor numbers:

A total of 47 patients were invited to take part in the programme. Three were no longer eligible to participate because their symptoms had improved sufficiently prior to the study, seven could not be contacted or did not return consent, and six were unable to complete because of acute illness. This left a total of 31 patients who received the pacing programme.

All of which add to the evidence about natural recoveries and the threat of constant reinfections. There hasn't been a single rehabilitation program showing anywhere near the natural rates of recovery we observe over time. Recoveries which tell us that there is a natural process going on, but that's ignored entirely in favor of self-serving fairy tales.

There was evidence of improvement across process measures during the intervention (Table 3) with the number of PESE episodes decreasing gradually each week (15% fewer each week, 95% CI: 11% to 20%, p<0.001)

There was no evidence of overall change in Borg activity phase, reflecting the initial reduction in activity during pacing, before gradual increases over the remaining 8 weeks until activity returned close to its previous levels, whilst maintaining decreased numbers of PESE episodes, and symptoms, reduced symptom severity, and shorter duration of episodes.

This is confusing. They talk of no evidence of overall change in activity, followed by stating a gradual increase in activity.

Overall, no significant increase in activity phase was seen from baseline to week 12. However, patients intentionally reduced their phase of activity between baseline and week 1 whilst they began the process of adopting the programme protocol, before gradually re-building them as they felt able. Activity levels steadily returned to near previous levels over the course of the programme

So is this a problem with the Borg thing they are using?

This is actually one of the biggest problem with how pacing contradicts all expectations for rehabilitation care: that not increasing activity is still a positive thing if it leads to long term improvements. Whereas rehabilitation specialists would all expect an increase in activity, it's precisely by not increasing that you get a reduction in symptom exacerbation. So this screws up their metrics entirely.

Most likely 8 weeks is too short to notice much difference, but even then it doesn't seem to change much. Contrasting to active rehabilitation programs, where there is usually a change for the worse, but in all cases the patient is instructed to go along with what they can handle, and usually do very little since this is all they can do anyway. The only reliable worsening comes from programs that push patients.

This is also very similar to the CODES trial, where the biased researchers used similar results to boast of an effective treatment where there is actually nothing. And that's the different between them and us: we care about the real outcomes, we have all the stakes, they have none and so argue self-serving nonsense. We demand the truth, they thrive on lies.

Not much else to say here that coming to 5 years of this, we still have zero promising treatments on the horizon, that nothing really makes a difference. This is the real scandal: that despite this massive failure, the sense of urgency is not budging in the right direction, went from maybe 1/10 to 1/20, and especially that hardly anyone seems to mind that. Systemic complacency from systems too out-of-touch with reality to be effective dealing with complex problems.

 

[CorAnd]

A structured pacing protocol effectively reduced PESE episodes frequency, duration and severity but did not produce clinically significant changes in LC symptoms, reflecting the long-term nature of the condition in this cohort.

This is exactly my experience with pacing. Pacing does NOT improve my ME/CFS. It just helps me avoid crashes. Crashes lower my baseline, so it’s crucial to avoid them.

 

[Yann04]

This is exactly my experience with pacing. Pacing does NOT improve my ME/CFS. It just helps me avoid crashes. Crashes lower my baseline, so it’s crucial to avoid them.

Same. But long COVID includes a group of people who probably follow that trend in the first few years where they have an ME/CFS like illness and spontaneously recover.

What pre-COVID was called “post-viral fatigue syndrome”.

 

[CorAnd]

long COVID includes a group of people who probably follow that trend in the first few years where they have an ME/CFS like illness and spontaneously recover.

I often wonder if I would have avoided becoming severe, had I paced and rested aggressively during the first few years. Instead, I did the opposite: pushed and crashed and pushed some more, trying to beat whatever I was feeling with sheer will power…

 

[Sean]

Most likely 8 weeks is too short to notice much difference,

+1.

The longer it takes for a patient to find out about pacing and put it into practice, the longer it is likely to take for the benefits to flow through.

 

[Nightsong]

This has now been published as part of a journal issue focusing on rehabilitation approaches in Long COVID under the new title "A Personalised Pacing and Active Rest Rehabilitation Programme for Post-Exertional Symptom Exacerbation and Health Status in Long COVID (PACELOC): A Prospective Cohort Study":

Link | PDF (J Clin Med 14(1):97)

This approach, with its notion of "active rest activities" and the Borg protocol has little to do with pacing as ME/CFS patients tend to understand it but seems to be more of a rehabilitative approach:



And one of the outcome measures (supplementary data p4) asked these questions:

1/ Are you able to notice the difference between tense and calm in your body?
2/ How much does the feeling of pain/discomfort in your body worry you?
3/ How able are you in listening to the fatigue cues in your body?
4/ How able are you to consciously breath nasally, softly, and slowly with your diaphragm?

The corresponding author is being funded by MEA to produce some kind of dysautonomia management protocol.