Research on pacing as treatment for ME/CFS. Discussion of how to do it.

absolutely, i would LOVE to try & see what happened if i was able to really pace properly & see if it helped, to try all kinds of things but as it is its just an attempt to survive & get through as best i can. Life circumstances over which i have no control, simply wont allow it.

 

You don't. Pacing isn't a treatment anymore than avoiding smoke-filled rooms is treatment for asthma. Anyone who thinks this is valid doesn't understand pacing or the context in which it's used.

 

I agree that it'd be great to study this, but one of the stumbling blocks is finding a reliable way to identify when rest is needed in order to avoid getting even moderate PEM. I've tried various strategies for working it out, but always come back to instinct as the least unreliable. Heart rate doesn't work at all; there can be some relationship to step counts, but it isn't usually caused by walking. It's much more likely to be bumping round nature reserves in a powerchair too often.

I suppose there is one threshold that shows clearly that pacing isn't working, and that's PEM severe enough to be non-negotiable. You don't need much training in symptom recognition to be absolutely sure you've got it.

With people who aren't severely ill, I wonder if we could at least say that someone who doesn't have symptoms severe enough to force them to suspend most of their activity, on more than X days a month, is pacing? And that frequency of severe PEM over a year is a reasonable measure of effectiveness?

When it comes to groups and controls, maybe one is asked to pay attention to pacing and the controls are simply asked to monitor their symptoms in a way that will allow the researchers to spot significant PEM. It's hard to reach any kind of ideal level of pacing because it runs against human nature; even if I had every adaptation I needed and an array of personal servants, I'd still incur some PEM because I want to do things I enjoy.

 

I agree that it makes sense to know better about this, but nothing done in the last century suggests this is something medicine is capable of. They can do studies, but those never tell us anything about anything.

More concerning is that most of the hands that would grab this would misuse it, specifically researching this as a treatment. Like PACE did. It would probably end up even worse if somehow a series of trials turned the concept of pacing to mean GET. All it would do is confuse about the term, and that's a win in BPS land. It cements inaction and keeps everything locked in place.

There is value to quality research on this topic. The probability that any research done on this would be not only of a minimal quality and usefulness, but not used explicitly the wrong way, is just minuscule.

It would be great if we could know more, but it's not realistic. We have to work with the healthcare industry we have, and it's not capable of doing this safely, or even meaningfully. We could see hundreds of studies and trials of pacing going on for the next 3 decades and literally learn nothing of value. IMO this entire methodology of research is invalid, is not particularly different from legislative committee work. It's just people arguing for something they want and what a lot of the people involved want is bad for us.

 

Maybe it would be better to call pacing a management strategy instead of a treatment? It's not about increasing function and capacity in the way that exercise is claimed to. Its about stabilization and minimizing crashes and potential worsening of function over time. The expectations for what can be achieved and the approaches, outcome measures, etc, used to study would need to reflect its purpose as a management strategy.

 

I think that makes sense, however "management strategy" has implications for the expectations of health professionals, for example: A Taxonomy for Disease Management

TABLE 1. Principles and Recommendations From the AHA’s Expert Panel on Disease Management

1. The main goal of disease management should be to improve the quality of care and patient outcomes.
2. Scientifically derived, peer-reviewed guidelines should be the basis of all disease management programs. These guidelines should be evidence based and consensus driven.
3. Disease management programs should help increase adherence to treatment plans based on the best available evidence.
4. Disease management programs should include consensus-driven performance measures.
5. All disease management efforts must include ongoing and scientifically based evaluations, including clinical outcomes.
6. Disease management programs should exist within an integrated and comprehensive system of care in which the patient–provider relationship is central.
7. To ensure optimal patient outcomes, disease management programs should address the complexities of medical comorbidities.
8. Disease management programs should be developed for all populations and should particularly address members of underserved or vulnerable populations.
9. Organizations involved in disease management should scrupulously address potential conflicts of interest.[/QUOTE]

 

There is a risk that ‘a theory of pacing’ could be a like the Theory of Evolution (ie survival of the fittest) in that it is unscientific as it is circular. In evolution the problem is that how do you define ‘fittest’ independent of survival meaning there are no testable hypotheses as whatever survives is by definition the fittest? Similarly if pacing doesn’t work is it pacing?

In both situations any research would need to address specific questions [rather than attempting to evaluate a general principle. For example

• Can an individual do more activity in total if any activity is broken down into fixed time increments interspersed by a specifically defined rest period, in contrast to the same totals of rest and activity where activity happens all in one go?
• Can an individual do more in total if they switch between distinct activities, eg physical and cognitive?
• Etc

However there are so many potential specific questions and so many potential variables to consider, it would be hard to know where to start.

 

I'm wondering whether looking into old generations of specialisms like Occupational Therapy and Occupational Health papers might be interesting context.

When you get more and more disabled and have to go through various processes one thing becomes clear that is hard with ME/CFS and that is that you need to 'get ahead of it' with adjustments, and yet most people in the world just intuitively want to negotiate and push at the 'can't' even when it has become something you can no longer do.

So research that focuses on the step-back-to-step-forward rather than PACE seems like a more interim and safe 'term' in order that it doesn't turn into taking individuals with individual bodies and situations and trying to robot-programme their lives and behaviours, but instead is just confirming the less part of things. But then it is defining the 'properly less' in an amount relevant to someone's threshold and disability.

After all GET didn't actually control 'the rest' and only focused on 'the prescribed' in theory, for all we know there were people who would have been doing more exercise, work etc before and cut it back around their GET bits. And you look at the old neuresthenia harp-backs from BPS and old texts and there was the 'exercise' and 'put women to bed' extremes and really all the behavioural stuff is missing the point vs the 'load'. It isn't a behavioural issue as what you have on your plate still sits there as an issue, and stuff done to people is as bad as things they do. So I'd like to see stuff moving from outside that arena entirely.

Hey those areas might even see 'worth' in people getting a fuller life for going down to 4 days or shorter days ahead of desperation and having a scooter or mobility aid to reduce exertion. They could certainly map controls vs adjusted against whether they ended up with other needs longer term e.g. whether those who kept schlepping on ended up needing shower chairs and doing less days in the end.

I guess theoretically the right talent frm these areas might come up with 'ahead of time' adjustments for severe and make that, for once, which really needs to be brought into the loop and spectrum on this for it really to describe what ME/CFS is, properly part of it. And then it does kind of become treatment of a kind. Looking into a 'stop the decline, rest, maybe improve' approach focusing on support and rest and adjustments that allow reduction for essential things at the right point vs someone not getting that. The difficulty is the expectation that it is more than stopping decline.




That probably is something that could be trialled, because it could be reducing some obvious crunch points e.g. work hours/intensity, adjustments like electric wheelchairs (or scooters if it is mild people), showering facilities before they get to a critical point instead of after + 1 year type thing. And seeing whether over the space of 5yrs people actually ended up better or worse than the control group. And that control group would be the bit politically needed I would guess though/a very good economic case. But yes life gets in the way because if people do OK they might change jobs or get a promotion and it is snakes and ladders stuff and people have to balance competing needs, so I can't see it being anything other than 'service-based' and about a paradigm shift experiment there.

Given they've done 4 day week experiments anyway in some companies I don't see why maybe some pilot public sector type areas (and maybe a few big private sector that are good and have a good rep) couldnt sign up to a 'new paradigm'. Schools or universities might also be obvious places if totally broken off from the BPS control to have new pilot approaches. The issue is retraining a mindset across whole professions and that is why I thought of those two as there is at least some aspect of the preventative still in there and the pragmatic creativity of a 'less bad outcome/further issues being averted' vs brainwashed 'you lose if you don't motivate to achieve goals' CBT embedding

whereas it would need a genuine bubble controlled measuring every input to cognitive and sensory and still my body would have ups and downs on energy and sleep, and really none of that is anymore experimentally accurate as it is arbitrary (assuming all humans have x limit) rather than relevant (x% reduction) and focused on number of activities vs all the other things. And that's when we get pwme given bed times and behavioural timetables and told we are bad if we can't make our bodies mimic something a normal person would go out of their mind with, even when their body apparently being normal (but I bet their bodies fluctuate too).



And yes within this, and @Peter Trewhitt had a really good list of questions on another thread, are questions that my gut feeling is might be really good ideas but mightn't be necessarily lowest common denominator for all in all situations. Was my having to take a week off every 6-7 weeks actually a good way of managing my body, but also was it 'in total' when you think about managing my job and life the best was of keeping the intensity and stress of that job and life in tune with the ME needs?

At the more severe end then triggering PEM at all is a nightmare. But at the less severe is there the question of trying to avoid that, and doing it badly, but the real kicker being to get the full amount of 'proper full catch up/recovery' e.g. radical rest before and after something 'big' that needs to be done. These things are actually on the ground more useful. As is someone being prepared to log and authenticate actual levels of debility so we don't have an argument and negotiation to be believed. And I'm not sure how a lowest common denominator trial can achieve that easily given the individual fluctuations but we need better than the really fuzzy stuff we have now.

Trying to do a job in 30mins less a day that hasn't shrunk just to artificially seem to reduce working hours isn't the same. There are maybe some jobs where e.g. reducing from 3 shifts to 2 or reducing a 12hr to 8hr shift could literally be doing what it says on the tin but it isn't always that simple. When someone is then at home for the school run when they wouldn't have been before then it is swapping one for another for example.

 

When I was still able to work, I was employed for two and a half days a week, but worked three days taking every sixth week off as time in lieu. For several years this worked well for me and I was undoubtedly experiencing some recovery. (My initial ME onset was associated with an active EBV infection.) Unfortunately then associated with a bad dose of seasonal flue I had a major sudden onset relapse and have not been well enough to return to work in the over twenty years since.

 

Your last point is why I wonder whether the general principle is the only thing we really can evaluate reliably.

What matters is PEM. Avoiding PEM significant enough to stop someone doing things they otherwise could is the object of pacing, and anyone who's still getting it isn't pacing effectively enough. The trouble is that the PEM threshold is individual, changeable, and invisible, and pacing strategies may differ due to individual illness profiles and life circumstances. This makes it incredibly hard to write a protocol based on specific approaches that's also flexible enough to serve a whole cohort.

We want to know whether effective pacing reduces symptom burden, enhances ability to manage essential living activities and sustain relationships, and improves general wellbeing scores. I don't think I'd want to see questions that asked "Can they do more in total if...?" because that's dangerous territory given our history.

The aim surely is to stabilise symptoms and find ways of living that don't make people ill, and that frequently involves doing much less of what doctors and researchers call activity. Patients might actually be able to do more if they can pace, but their idea of 'more' may be altogether different: being able to shower or bathe as often as they want to, talk to people, organise good food, sit out in the fresh air, manage their lives without snags turning into crises because they never have the resources deal with them in a timely way.

 

In light of the other thread on actimetry I was just thinking again about the discussion i think in this thread about how to measure different kinds of exertion. One suggestion in this thread (EDIT: not in this thread but in a similar discussion in the past) for cognitive exertion was some kind of glasses that can track eye movements. What about simply an app you install on your computer that tallies mouse and keyboard button presses? Would that would be a halfway decent proxy?

 

Can we use studies on non-pacing behavioural interventions to show that there is a dose-dependent relationship between non-pacing activities and worse health outcomes? If we could prove that not pacing is bad, and that it is worse to pace less, then avoiding non-pacing (i.e. actually pacing) would be beneficial in that we avoid harm.

It wouldn’t prove that pacing makes you better, but it would prove that pacing is better than the alternative.

That being said, pretty much all non-pacing studies are open-label and subjective, so they are worthless. Do we have to do a proper study on a harmfull treatment just to prove that it is harmfull?

 

@Trish I completely agree with you. I was thinking about getting scientific «proof» that non-pacing is harmfull.

We all know it, but all of the studies are worthless, so we can’t use them as proof of anything, even that non-pacing is ineffective. The current state is that we have no useable data, so it shouldn’t be recommended.

Or am I missing some studies that were «good enough»?

 

I’d like to see some people design a pacing/energy management trial, then try to evaluate it, just for laughs.
It’s such a poorly-defined “cookie cutter” concept which has quite little real-world basis.

My imaginary pacing management study
Part 1 - researchers set out an idea of a “baseline -at home” day/week. S4ME crashes under the weight of replies as to how easy and unrealistic it is.

Part 2 - researchers announce a “baseline control” who will be staying free of charge at a private hospital for 3 months. Their website crashes under the thousands of applications in the first hour.

Part 3 - the research begins and it quickly becomes apparent that the “baseline at home” is impossible to achieve in a consistent and uniform manner

Part 4 - for some unknown reason, some of the “baseline control” group are deteriorating and having issues despite being looked after and having no responsibilities

Part 5 - it’s clear towards the end that following pacing is near impossible due to both factors in real life, and whatever the biology is doing to people.

Part 6 - the researchers declare pacing a success but recommend people are not allowed to rest too much as that’s not really pacing and it doesn’t seem to help them, but also people need to get better at pacing.

Part 7 - The research statistics show that the “baseline control” people are happier and feel more positive, and the “baseline at home” people are unhappy and have deteriorated, however 50% of the at home group dropped out anyway before the end.

 

This contradiction is actually written down in the Health care guide to ME/CFS in Sweden which says: patients need to be explained in a pedagogical manner that exercise is not harmful (…) patients tend to exert themselves too much.

So… what is it? Do we do too much, or not enough?
Answer: Whatever fits best in the given situation, as long as the blame can be put on the patient.