The effectiveness of activity pacing interventions for people with CFS: a systematic review and meta-analysis 2022 Casson, Lloyd et al

Abstract

Purpose
To investigate whether activity pacing interventions (alone or in conjunction with other evidence-based interventions) improve fatigue, physical function, psychological distress, depression, and anxiety in people with chronic fatigue syndrome (CFS).

Materials and methods
Seven databases were searched until 13 August 2022 for randomised controlled trials that included activity pacing interventions for CFS and a validated measure of fatigue. Secondary outcomes were physical function, psychological distress, depression, and anxiety. Two reviewers independently screened studies by title, abstract and full text. Methodological quality was evaluated using the PEDro scale. Random-effects meta-analyses were performed in R.

Results
6390 articles were screened, with 14 included. Good overall study quality was supported by PEDro scale ratings. Activity pacing interventions were effective (Hedges’ g (95% CI)) at reducing fatigue (–0.52 (–0.73 to −0.32)), psychological distress (–0.37 (–0.51 to −0.24)) and depression (–0.29 (–0.49 to −0.09)) and improving physical function (mean difference 7.18 (3.17–11.18)) when compared to no treatment/usual care. The extent of improvement was greater for interventions that encouraged graded escalation of physical activities and cognitive activities.

Conclusion
Activity pacing interventions are effective in reducing fatigue and psychological distress and improving physical function in CFS, particularly when people are encouraged to gradually increase activities.

• IMPLICATIONS FOR REHABILITATION
• A key feature of chronic fatigue syndrome (CFS) is a prolonged post-exertional exacerbation of symptoms following physical activities or cognitive activities.
  
  
• Activity pacing is a common strategy often embedded in multi-component management programs for CFS.
  
  
• Activity pacing interventions are effective in reducing fatigue and psychological distress and improving physical function in CFS, particularly when patients are encouraged to gradually increase their activities.
  
  
• Healthcare professionals embedding activity pacing as part of treatment should work collaboratively with patients to ensure successful, individualised self-management strategies.
  

Paywall, https://www.tandfonline.com/doi/full/10.1080/09638288.2022.2135776

 

*Record scratching sound*
That's a dramatic change in tone.

Also, it would be hard to prove pacing actually works, due to the same issues that plagued PACE. A slight difference is that we market pacing as a symptom management strategy, not a treatment.

 

Not access to the full paper but the supplementary tables can be downloaded here, https://figshare.com/articles/journ..._systematic_review_and_meta-analysis/21516462

The 14 are Al-Haggar et al, 2006 , Deale et al, 1997 , Friedberg et al, 2013 , Friedberg et al, 2016 , Jason et al, 2007 , Keijmel et al., 2017 , Knoop et al, 2008 , Marques et al, 2015 , Prins et al, 2001 , Raijmakers et al., 2019 , Stulemeijer et al, 2005 , Tummers et al, 2012 , White et al, 2011 , Wiborg et al, 2015

File of tables attached

 

These endless meta reviews are are so frustrating given the very low reliability of the studies included.

If only we could wipe the slate clean of current BPS research and insist they start again with better definitions of ME, an acceptable understanding of PEM and interpretable experimental designs.

 

So, what were the primary outcomes being tested for? It seems very strange that they haven't been mentioned.

 

It's actually hard to point out all the things that are wrong because there are just so many. Starting with the fact that pacing is not, and cannot be used as, an intervention or a treatment. Especially a distortion of pacing that makes it GET-by-lying, showing Lloyd still doesn't have a clue about what the words even mean, what pacing is. Or doesn't care. Probably both.

Pacing is not effective at reducing fatigue, the fact that this review can name PEM and pretend to take it into account and still fumble this is incredible. This is far too complex to be reduced to simple soundbites, still obsessing over making this all about fatigue and nothing else.

"Do not go to expensive restaurants or spend nights at the casino" is not a treatment for poverty. There are very special cases of excessive spending behavior where this might make sense, people who spend compulsively, but those are rare and a completely different issue. The misapplication and distortion of pacing is just as foolish.

And with how pacing is reframed as GET-by-lying, this makes as much sense as a fasting method that incorporates regular small meals through the day. So it's both fasting and small meals. At the same time. It's completely self-contradictory, and because these people are fake experts who are out of their depth on an issue where words mean nothing on purpose, they can't even see the obvious.

I assume that Lloyd expects us to be stupid about this and be glad that it shows that "pacing" works, even though he uses it completely wrong and can't be bothered to understand the basic facts. And even though it won't happen, I'm sure he'll see it happening anyway. Now that's an actual expectation effect.

 

I’m starting to assume that either they are recruiting people who don’t have the disease and the bully-brainwashing them as BPS attitude does (pretending it’s for health or motivation but it’s just bullying and bigotry of ‘ do it yourself get in with it’ in how it actually happens ‘skilled’ or ‘not skilled’ that’s what ‘their embedded CBT’ is

or they just ignored every word the patient said or wrote browbeating using same ‘CBT’ attitude (embedded bullying) to pretend ‘I don’t understand it’ or rephrasing disabled peoples answers back at them as the opposite until they yield to get out of the room to safety. Where this happens to me it is an even bigger issue than just fraud of forcing the answer you demand from people it’s also disability bullying deliberately taking advantage of what will hurt people with certain illnesses and bigoted lies (perfectionist OR not motivated -you are in no win for one or the other of these fake nasty name calls) to get what they want.

call this what you want but it’s institutionalised, habitual (embedded through training) and bigotry and disability bullying/harm by basically being the opposite to adjustments by choosing to push buttons on weak pints of a condition in order to make it worse as a threat to extract answers you want. And it needs to be called out as the ‘coaching style’ all HCPs are coached in today. So no ‘research’ is free from it if they don’t note how they accounted for removing it. Which would mean training empathy back in and probably needing to select and recruit staff based on competency and motivation for them to ‘pick up that empathy’

all this research seems I would say absolutely inaccurate unless they root out this attitude problem they trained into staff they will surround participants with (worst thing is said staff won’t realise what bad actors they’ve become as they are told ‘it’s a good skill not bullying’). How can any of ther past and future research in any areas like this using such measures and attitudes possibly be showing anything beyond how bullying to make people do and say certain things makes research null and void as it bonbards out real info being able to be provided by respondents if people are pulling faces and discouraging it?

 

I’d be intrigued to find out looking at which studies, authors and context whether more accurately this proves:

the bigger the threat the investigator is to the patient, the bigger the ‘supposed result’ forced out of the ‘sample’ by self-report measures combined with this implicit threat [if wrong answer guven].

circumstances like if sample were at a clinic where these individuals had power to detain, influence harmful treatment, remove essential financial or other assistance on which survival depends and writing of letters which influence access to other devices like GP, doctors in hospitals, family, employer, schools, ‘black notes’ and ‘inferences’ that will stay with people for life etc.

I hope someone is able to take this exact same analysis and study it for these perceived ‘inducements, threats, powers over safety/future’ to note whether that connection is as I suspect. In hierarchy of needs those who’ve tended to be most likely to present and implicit and likely threat to safety of those they don’t like the answer of seen to be those who get the answers they want appearing most in their outcomes? Just a theory but probably a pretty testable hypothesis given the range of authors in this. ‘people will say anything you want if enough pressure is exerted or threatened’ type thing.

And vital stuff to start wiping out research done on the wrong people under ethically inappropriate conditions. How can they prove their studies were in anything other than this whilst such fear of their actions might hang over participants with no safeguards to suggest they wouldn’t have such fears?

 

Supplementary table 2 gives an overview of the studies and how they were rated using the PEDro scale:

 

Full article. It's all Fukuda and Oxford studies. Their findings mean nothing.

 

Is anyone aware of a paper that does accurately show the effectiveness of the right kind of pacing?