Physical therapists have a lot to learn about post-viral fatigue in the wake of a “tsunami” of long COVID patients

I suspect that phone-data level is the only effective way (goodness knows how you encapsulate all the elements as cogntive/looking at things etc) because I know from having to spend so many years working whilst really ill that it 'collects' e.g. the classic weekend in bed radically resting (I guess at there is some word for it now) even tho you've done that every night you got home from work. And then still having to use annual leave to do further radical rest over a week or more in order to just about get back to the point where you can keep putting one foot in front of the other with the evenings and weekend rest.

Knowing enough maths, I know that we'd need someone who is capable of modelling these different sequences across the data - because the world gives us no leeway for the pretend 'stay on top of your PEM', but I'm not even sure that is how it operates with some of us (difficult to separate having had to do that for so many years from whether that influenced how the body works or whether that was how the PEM worked).

It will need some sort of 'look for patterns/sequences' mode for each individual set of data - because I suspect there is something underlying each on the surface-level obvious stuff and then post-clustering there will probably be explanations hidden in whatever might connect/underly these different groupings. ie those doing the keep going whilst under-resting then 'out' pattern vs 'nearer to pacing' shows the internal data of how that 'collects up' and the 'healing/resting process'. As someone who is 'knocked out' by my body during that phase there could be meat on bones from one of those head sensor things during one of said weeks of recovery vs just weekend vs almost conking out still dressed in work gear when you got through the door of an evening.

 

To be fair there are probably some examples from e.g. research in business about using such scales vs 'global estimates' and accuracy. There is a lot to be said for (and confirmed in past literature) people's ability to get a concept and be able to assess that instinctively more directly than the sum of parts can.

Decent research that could look into the accuracy of ME patients in their global assessments vs such individualised versions could be done in order to provide something that is both doable but also there is confirmed validity in what it incorporates vs doesn't between reader and filler-inner. ie training and checking/moderation processes. That might sound scary to some, but it is what many areas have relied on for many years pretty accurately (imagine moderating exam papers, admissions applications, taste tests, service quality assessments) to get to the heart of what needs to be measured and how to quantify that.

I'd be more concerned about triangulating it with hard physical data/measures and getting a sense of what it encapsulates (by going back to said checklist) being useful for the understanding of medics, employers and so on.

If on the other hand, and I suspect this in myself, there are different types of PEM and different types of symptoms to different patterns of overexertion and other issues then the individual symptom sets are fascinating. But even 12hrs is a long time for this and lots of people would need to do retrospective where you've been lying on your back unable to move knowing each of these symptoms then report them in with quite accurate timings when you can actually move.

No way a 100-point questionnaire would be doable tho and I'd assume some sort of autofill process for those you know with prompts only for other common areas that associate or 'general topics' eg. if I put in leg aches, then cascades of the POTS type things (or muscle post-exertion) to tick. I'm thinking like a supermarket 'have you forgotten' checkout process then for broader themes of 'sleep issues', 'cognitive issues' where you yes/no and get similar drop-downs. Or maybe as the above research goes on it is mainly 'cardinal issue' + 'secondary set' that could sort of tend to hone up over time to what said individual tends to get alongside certain things.

But I wouldn't trust the BPS/behavioural arm of psychology o get this right going by their scale validity research in the past. e.g. Services marketing vs that seems a different kettle of fish when you compare the critique discussions and movement towards meaningfulness, and I'm sure there are plenty of other areas

 

In fact the whole online checkout algorithm could be a good starting point for all of this. I'm thinking they've have the 'you usually buy', 'incomplete offers' (where these symptoms tend to come together), 'have you thought about' (which could be 'popular items' at that time e.g. heat-related or what many others seem to be picking lots for other time-dependent reasons such as start of term or xmas) - could all be repurposed with options quite well.

 

Thanks for this, as someone who doesn't have ME/CFS, a family member has, it reminds me of their struggles.

I can also see Jonathan's point re patterns --- struggling all week then collapse for the weekend.

 

Many have muscle wastage, what is the term for 'muscle gone but not necessarily due to lack of use' or does it all have that cause and is deconditioning?

I'm sure I got it when I was still having to walk about including significant vs the condition regular ones for things like commutes (which hurt a lot afterwards). Which makes me unsure that given the worst wastage then was in the calves, in fact through to the front of leg too - probably the most 'taxed' muscle on a regular basis - that it was due to 'not using' vs 'used above whatever it needed'. Someone investigating this is key because for those who have it then it will be noticed by professionals, and if it isn't 'deconditioning' the phrase needs to be withdrawn as the term for what they see and replace with wastage that could be caused by x, y, or z.

It's not great for those with ME to be having to do that, but for the default to be assuming it can only be caused by non-use and not by those who are e.g. put on GET or reconditioning is pretty vital. I think because too many are still so functionally fixed into that being all that can cause it they feel, even when they 'get' ME (just not fully) there must be some sort of trade-off between ME and 'keeping your muscles'. But are we 100% in all who do have ME that is the case? You'd think they'd know this after so many years of putting people through GET (but they don't look at it) - if their muscles looked better for those increased exercises surely there would be pics of them all over the place even if the patient could barely stand or do other things?

 

Workwell has what you might call a pragmatic, baseline theory from what they have discovered in their experiments. They believe that people with ME are limited in what the can do because the aerobic system, which is the one the body uses as standard, does not work properly so we are forced to rely on the emergency ways of producing energy which are inefficient and only meant to be a backup used for a short time.

Whether this turns out to be correct or just part of ME it gives a way of understanding PEM as well as offering solutions. Better still, this way of thinking can lead to good outcomes and will not make us worse.

Having been ill for many years I realised that a lot of what they suggest is what I had worked out for myself so for a new patient it is a great way to think about how to live. What would have helped me most was the way it helps curb the instinct to do too much. My heart rate monitor shows my heart rate matches my symptoms well so I just stop until it goes down then carry on. I may not have become severe if I had these tools 30 years ago.

The crimes against us by the BPS people have made us wary of any mention of deconditioning and exercise but once our physical diseases are acknowledged we will have to consider how much we can do for health and for being able to maximise what we can achieve. Every little thing we can do extra adds more to our quality of life.

It is a sad fact that the sedentary lifestyle we are forced to live makes us liable to all the problems that brings. If I am well enough to climb the stairs once a day it relieves the pain in my back. I go a few steps at a time as suggested by Workwell and it works for me.

Since soundbites are very popular these days I think exercise and ME can be summed up by the BPS assuming we have a healthy body with all their advice based on that while the likes of Workwell acknowledge we have a broken bodies so try to find ways to maximise what we can do with it.

It is important we see this difference while being vigilant for wrong turns.

 

I'm not aware of him making such a blanket statement in the interview.

 

Let’s be honest though. Even if I became fully clear of ME tomorrow, I would not be instantly returned to my fitness level prior to ME.

Ten years of reduced activity means that my muscles are now only conditioned to cope only with the workload they currently encounter. Compared to ten years ago, I am most definitely deconditioned!

Of course in the initial phase, when my muscles were still good, it was the ME that limited what I could then do not some sort of instant deconditioning.

Yet, I am most certainly deconditioned now, compared to the state I would expect to be in, had I never come down with ME.

The big problem is that having ME means I have no means whatsoever of making myself fitter than my current ME threshold permits. That is hugely limiting, and is the bit that the BPS folk continually (and perhaps intentionally) misrepresent.

They see deconditioning as causative of ME, rather than a sad consequence of the lifestyle we are forced to adopt.

 

But does it really matter as ME limits what you can do physically anyway? In my case as my ME fluctuates my ability to do more things increases. So the level of deconditioning I may have isn't relevant as I never reach a level of functioning that this would impact on.

When I have good periods I seem to function as well as my sedentary sister does.

As an example when I had a good year and access to a cold pool once I managed to build up the number of strokes I could do in one session. Then I crashed again and lost access to the pool. A couple of years later I had another good year and could still swim the same number of strokes when I went to a pool.

This didn't help me at all in the bedbound and housebound years. I don't know how many stokes in a pool I could do if I had another good year but suspect I could build them up to the same level again quickly. Just to return eventually to being housebound again for maybe another 5 or 10 years.

 

I think we are saying the same thing really. It is the ME that is the limiting factor.

If I was suddenly cured of ME I would do more from day one, of course, but I would also gradually test out how much I could do, and would then build fitness towards my more natural age-appropriate level.

I wouldn’t attempt my full pre-ME antics immediately, as I’d need to build stamina to bridge the quite considerable gap between what I can do now, and what I think I should be capable of doing. (Currently my 82 yr old mother can walk further and faster than I can!)