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

[Kitty]

This is why I think we need longitudinal studies of activity patterns in ME.
Questionnaires are not going to be reliable without background evidence.

I agree, but also worry that it's not quite that simple. For instance, if my activity were being recorded over a few days recently, it might suggest I was probably on an even keel health-wise.

But only because it wouldn't capture the quality of the activity. It couldn't know that half of what I did consisted of putting right things I'd messed up: sweeping up a smashed glass, cleaning away split food, re-washing towels that had fallen onto the grass because I hadn't pegged them hard enough, rushing to shut all the doors because I'd dropped the bleach bottle and didn't want the cat anywhere near the puddle, walking about trying to stop my knee swelling after I'd crashed it hard into a table—the list goes on. I was active, but not functioning because I was in a flare.

Why do we need the evidence? In part, it's because people don't believe us. Of course I understand that we'll need measurements to test the effectiveness of any drugs that come along, and now's the time to develop systems so they're ready when we need them. But a lot of the problems patients are currently experiencing arise because they're regarded as unreliable witnesses to their own experience. Changing attitudes could probably improve ME patients' quality of life at least as much as some of the partially-effective drugs used in other chronic conditions.

 

[shak8]

Heath professionals are supposed to have "objective measurements" to show the effectiveness of their interventions. Thus, a starting point, or "baseline" howver useless.
Part of the push for "evidence based" I suppose.


In studies about the effectiveness of pain meds for FM, for instance, I want to see an across the board 40-60% reduction of pain in the majority of in the study, THEN I will stand up and take notice.

A very simplified and yet accurate baseline is probably not possible for either FM or ME.

I think the focus would be better spent on measuring vast improvement and how those measurements might be taken. But there has to be a comparator, some kind of "before the intervention" compared to "after the intervention."

One might start with the 100 or so symptoms (like accidents, spills, misplacements, swollen glands, PEM days/weeks,etc. etc) that are on a personal checklist for an individual's ME. Lord help the poor soul who has to fill out a 100 point questionnaire daily if one is able to and accurately and how to validate such an instrument when mental capacity varies so much from day to day?

 

[Jonathan Edwards]

Why do we need the evidence? In part, it's because people don't believe us.

This isn't actually the reason I would like to see activity patterns.
I am not really interested in the amount of activity.
I am interested in documenting the changed pattern of activity and its relation to prior activity.
I am interesting in finding out if there is something unexpected about the pattern and relation.
At root I am interested in documenting the pattern of pathology. That is what got me to an answer in RA. I appreciate that there will be all sorts of confounding factors but underneath that there ought to be some sort of regularity to the phenomenon, whatever the cause. The most useful aspect of finding that may well be excluding a lot of theories that look superficially plausible but which in the end don't add up.

 

[Simbindi]

It couldn't know that half of what I did consisted of putting right things I'd messed up: sweeping up a smashed glass, cleaning away split food, re-washing towels that had fallen onto the grass because I hadn't pegged them hard enough, rushing to shut all the doors because I'd dropped the bleach bottle and didn't want the cat anywhere near the puddle, walking about trying to stop my knee swelling after I'd crashed it hard into a table—the list goes on. I was active, but not functioning because I was in a flare.

That basica11y describes my days!

 

[JemPD]

That basica11y describes my days!

yes its all very familiar

 

[Amw66]

t

uarity to the phenomenon, whatever the cause. The most useful aspect of finding that may well be excluding a lot of theories that look superficially plausible but which in the end don't add up.

This ( I really can't believe that this kind of thing has not been studied)

What changes as we enter PEM/ change activity levels ( as life gets in the way) - if feeling worse - what is worse / different and what has been done to cause this. is this the result of physical or cognitive activity?

All being equal for my daughter if physically over exerted ( NB my interpretation so will not catch all nuances)

• gait changes
• vision changes
• tremor to hands
• muscles tighten/ seize
• tendons seem to shrink ( or feel as though they do)
• breathing an issue ( perhaps as muscles tighten)
• pain increases ( again may relate to muscles). Of note are neck, shoulders, TMJ/ facial pain, hips and pelvic floor ( NB pain at hips and feet put down to " growing pains" at puberty - perhaps there was more to it than this)
• headache - degree and location changes ( additional areas dominate)
• sleep decreases - deep sleep phase is significantly compromised and sleep phase shift more pronounced/ insomnia
• OI issues become worse
• Feels as though has been run over by a bus and has slept on cold concrete.
• Bones and joints " cold" . Knees in particular are physically cold.
• Gut motility changed
• lymphs can swell ( not just neck)
• Itchy ( like bugs crawling)
• baseline HR drops

( I don't know the order or amplitude of these symptoms as it's not me)
NB monthly cycle affects this -PEM approaching menstruation is very bad news

Cognitive PEM

• headache intensifies
• cant read or listen to music, light sensitivity increases
• jaw pain increases
• eye pain /tightness ( feels as though too big for sockets and peripheral vision affected)
• physically exhausted.
• nightmares
• Dizzy ( but different kind of dizzy from physical PEM)

Combined PEM -

• feel poisoned
• mouth droops
• swallowing issues worsen
• headache off scale and nothing will touch it for pain relief
• dizziness - both things move and person feels as though they are moving
• physically exhausted such that even moving eyelids is an effort ( but can move)
• skin crawls and can be inflamed ( hands/wrist/knees- wrist is site of previously broken bones)
• coathanger pain pronounced
• gut issues worsen
• itchy ( crawly and itchy)
• chest feels as though encyclopaedias are sitting on it.
• hot/cold extremes
• wired and tired
• muscles seize and cramp ( can be rolling )
• noise and light sensitivity heightened
• basal temperature drops
• baseline HR drops, but feels like palpitations

 

[bobbler]

This.

The whole notion of a 'baseline' is seriously distorting understanding of ME.

Well said, they need to sort out a good vocab desperately. Baseline even in the context it is used 'right' for ME is actually the complete opposite of its usual meaning in every other walk of life. You are supposed to go nowhere near it, rather than progress from..

I'm one of the worst for using it because the concept of 'envelope-size' (which also doesn't cut it) is needed for basic essential communication purposes - so people can say 'no' and health professionals can say to others around us 'they really can't do more than that'. So tricky to get a word out of my head without a sticky, fits better alternative others will deign to understand. Or more accurately can't pretend they don't because it doesn't fit their own needs and agenda.

 

[bobbler]

This is why I think we need longitudinal studies of activity patterns in ME.
Questionnaires are not going to be reliable without background evidence. And however well intentioned I am pretty sure that the unstoppable temptation of physios to think they know how to interpret physiology when they don't will take hold, just in a slightly different form.

Agreed I think we have to get our head around the fact that if someone using good methodology (Workwell, physiosforME have shown much better indicators of this) isn't setting standards of how these things should be measured, and how such results should be interpreted (ie not lumping and dumping lowest common denominator) the gaps will be filled with guesses/assumptions/ideology that fit others' agendas.

Even Workwell might be at risk of repeating the same mistakes of too short a measuring span and separating the spectrum in understanding the condition and moving too fast into the 'offer help' instead of 'provide data' phase. Those two aspects are so key - if you don't design tests that can ethically still measure someone who's become v severe in 3yrs time then that 'quadrant' can't appear on your data, magically removing it as a possibility to be real (big flaw in the model). And to not even approach 'severe' (the next closest) as the next methodological task is a problem because they will miss the 'signals' or indicators that might flag where their interventions are causing bodily changes in milds to head that way slowly.

When I saw the Workwell stuff it made sense why my treadmill attempts had gotten shorter/worse rather than better (some gyms have a lot of data built into their little keys - and that could be one source BTW) when I tried on the suggestion of GP years before. What I now don't know is whether the fact that the (I was moderate then) v small weights/non-aerobic bit did show progression (til I relapsed) whether that was 'a different system that was fine' or just took longer to conk out in reaction to it.

The sad thing is that is you took the medication and treatment away from those with many diseases then what PwME describe is the more logical and obvious scenario - but this BPS thing of 'just a bit more now does you good later' has taken such hold, and works so well for other people in so many situations. Along with this utter terror of the idea of deconditioning or 'use it or lose it' pushed through certain age groups. Well, we've got default primed to cart before horse. Which would become a bit silly when you've got graphed data even 12yr old athletes would do and understand for their training sessions showing the opposite. But it takes a lot to overturn it.

The horrible irony is that whilst the scientists have the major stumbling block of the ethics of exercise programme + 2-day CPET to absolute proof to work around, BPS don't. As long as you cite a theory that says you don't believe these things happen currently you can get ethics sign-off for bunging POTS people on a tilt table for no good reason, put them through increased exercise either through GET or CBT and never have to assess the objective state of their health.

Maybe what we really need is for Workwell/physioforME type thing to recruit those who already signed up to a Crawley or Chalder special into a study that is as simple as doing a 2-day CPET and muscle strength, cognitive tests (so one system can't cannibalise) before and after + 6mnths, 1yr, 2yrs, 3yrs (and a govt sign-off for such an investigation to take place on the basis of how much £££ in funding that would save, but also it being a basic proper check into their safety based on the pretty well-put claims of harm for these things).

But we still have the stumbling block of ... if they are still medically fit to do so. Which is where my mind rambles to the HeartRate in the home pilot @PhysiosforME did a while back - and assuming that the iller someone is the worse such data would be in response to activities they couldn't avoid anyway (work, daily commute etc). They could perhaps also work on how to adapt the muscle strength test etc to still be safe if severity dips hugely over this longitudinal span of 3yrs.

Combined with a really well thought-through phone app (privacy vs ease of use/capture of all elements) this one seems the hardest to set up but the most applicable across severities (which is also the key to provide info for medics to inform if someone is 'switching stages' maybe).

 

[Adrian]

This isn't actually the reason I would like to see activity patterns.
I am not really interested in the amount of activity.
I am interested in documenting the changed pattern of activity and its relation to prior activity.
I am interesting in finding out if there is something unexpected about the pattern and relation.
At root I am interested in documenting the pattern of pathology. That is what got me to an answer in RA. I appreciate that there will be all sorts of confounding factors but underneath that there ought to be some sort of regularity to the phenomenon, whatever the cause. The most useful aspect of finding that may well be excluding a lot of theories that look superficially plausible but which in the end don't add up.

This is what I was thinking in terms of activity over time helping give a better picture of PEM. If there are cofounding factors then having lots of data helps (assuming the cofounding factors are random).

My feeling is for activity the data doesn't need to be that fine grained and activity monitoring apps on phones probably provide sufficient for a lot of physical activity. Mental activity is harder to monitor.

 

[Adrian]

All being equal for my daughter if physically over exerted ( NB my interpretation so will not catch all nuances)

• gait changes

I thought your list looks good. It would be interesting to survey such things (and I think there would be variations between people but probably a lot that is core. I can observe many of these (and a few different ones like increase in nausea)

I notice my phone now reports not only on steps but things like step length, walking speed, double support time and set asymmetry - which may detect gate changes.

The other thing I think is PEM isn't linear. I wonder if it is exponential (although observed as a moveable threshold) with some activity having minor effects then an getting into the area where the curve rises steeply effects quickly get worse.

 

[Ebb Tide]

@Grigor I had listened to the Tuller/Davenport interview and didn't find it problematic.

Workwell were pleased to present the blog series for this journal which has a large audience of Out-patient physiotherapists/physical therapists. They wanted to try and get information about PEM (which has been learned from ME) in Long Covid to this clinician group, to prevent harm and improve management.

If you are already familar with Workwell's approach you probably wont find anything new but patients weren't the target audience.

I listened for a 2nd time and made notes and unless I've missed something, I couldn't hear anything problematic about deconditioning in it.

3 mins10: PEM/PESE is not seen in the general out of shape/ deconditioned population

3 mins 48: Discussion about different subgroups post-covid, organ damage, hospitalized, post ICU, those presenting with PEM/PESE.

The possibility of post-viral deconditioning is mentioned as a possible subgroup but there was no suggestion that this is causal of ME type symptoms. (Someone who has been in an induced coma and ventilated on ICU for weeks to months will be deconditioned.)

6 mins 50: 2 day CPET, day 1 ME patients performance slightly lower than deconditioned individuals, 2nd day markedly worse

10 mins 08: People with PEM very different from people who are deconditioned, are unable to do things because of their physiological response, not because they are out of shape.

 

[Kitty]

I notice my phone now reports not only on steps but things like step length, walking speed, double support time and set asymmetry - which may detect gate changes.

I've said it before, but this kind of data is critical if the studied population is on the mild-to-moderate spectrum.

Many of us simply don't have the option to rest, as we live alone and need to eat, toilet, and keep ourselves, our clothes, and our living spaces at some level of cleanliness. Because of this, it would be easy to show patterns and levels of movement that aren't at all representative of our state of health. But I know my movement changes markedly when I'm in PEM, and I suspect the same goes for a lot of us. It's clumsy, uncontrolled, inefficient, and jerky, which is why so many of us talk about turning into a one-person wrecking crew on a regular basis.

Even the basic accelerometers used in fitness training are capable of capturing some of this. What we need is the code to apply it to some key everyday movements.

 

[Adrian]

I notice my phone now reports not only on steps but things like step length, walking speed, double support time and set asymmetry - which may detect gate changes.

I've noticed that apple seem to be doing some health projects around data that they can collect on a phone.
Apple's Research app: What does it want your health data for? | ZDNET
I wonder if there would be researchers that could approach apple to see if they could add another study around activity monitoring (perhaps around PwME, Long covid and some healthy controls)?

 

[Mij]

Slurred speech and gait changes are my immediate indications that I'm sliding into cognitive PEM. I need to full-stop.

 

[CRG]

* I'm not actually convinced a baseline exists in the first place, to be honest, but I suppose there's a range of capacity to do things that could be described as a Not Badly Crashed state. It's a wide and highly contingent range, though, not a line.

It's difficult to get people to think in other than linear terms, even more so for those who measure things - therapists, researchers etc for who there is a tyranny of 2d charts with everything moving, if only on the time vector - in one direction. I'd hesitate to invoke 'chaos' but visualisations of chaotic systems seem to me to capture far more meaningfully what having ME/CFS means than any linear graphic. Not specific in anyway but the behaviour of the red ovoid in this visualisation is to me analogous to my symptom experience:

 

[bobbler]

This is what I was thinking in terms of activity over time helping give a better picture of PEM. If there are cofounding factors then having lots of data helps (assuming the cofounding factors are random).

My feeling is for activity the data doesn't need to be that fine grained and activity monitoring apps on phones probably provide sufficient for a lot of physical activity. Mental activity is harder to monitor.

Indeed, and if you are working by things like Heart rate and input into phone apps which is then aggregated across large numbers then the privacy and intrusiveness is more tackle-able (you need to know less about the individual intricacies on an outlier as it skews data less etc) and you don't have 'identifiables' if you go with units of 5 as the min to report on.

 

[Sean]

The other thing I think is PEM isn't linear. I wonder if it is exponential (although observed as a moveable threshold) with some activity having minor effects then an getting into the area where the curve rises steeply effects quickly get worse.

I think this is very important: The response is not linear.

In one sense the most important management tool patients have is learning to stay within the relatively linear section of the response curve, and avoid entering the highly non-linear section, because that is when the trouble really starts.

(Someone who has been in an induced coma and ventilated on ICU for weeks to months will be deconditioned.)

It is actually not easy to become fully deconditioned. It requires a level of dedicated non-activity that is difficult to sustain.

But I know my movement changes markedly when I'm in PEM, and I suspect the same goes for a lot of us. It's clumsy, uncontrolled, inefficient, and jerky, which is why so many of us talk about turning into a one-person wrecking crew on a regular basis.

This.

 

[Amw66]

I thought your list looks good. It would be interesting to survey such things (and I think there would be variations between people but probably a lot that is core. I can observe many of these (and a few different ones like increase in nausea)

I notice my phone now reports not only on steps but things like step length, walking speed, double support time and set asymmetry - which may detect gate changes.

The other thing I think is PEM isn't linear. I wonder if it is exponential (although observed as a moveable threshold) with some activity having minor effects then an getting into the area where the curve rises steeply effects quickly get worse.

Yes nausea is another thing . In PEM it seems to be linked more to dizziness than stomach to begin with

It's a systems condition , so I think it's more likely to be exponential then flip ( like catastrophe theory and also tipping points in climate science)

 

[FMMM1]

Seems really interesting e.g. PEM is highlighted as a feature of ME/CFS. Currently I assume "PEM" is based on response to questionnaires yet approaching it like this (actimetry - potentially even mobile phone data @Adrian ) could prove an objective basis to assess PEM. Potentially identifying cohorts for particular studies.
I'm wondering if data on sleep patterns could be collected and would it provide insight into sleep disruption?
Sure I'm failing to understand the potential use of this type of data - but it's interesting.

Jonathan:
"I am interested in documenting the changed pattern of activity and its relation to prior activity.
I am interesting in finding out if there is something unexpected about the pattern and relation.
At root I am interested in documenting the pattern of pathology. That is what got me to an answer in RA. I appreciate that there will be all sorts of confounding factors but underneath that there ought to be some sort of regularity to the phenomenon, whatever the cause."

 

[bobbler]

Yes nausea is another thing . In PEM it seems to be linked more to dizziness than stomach to begin with

It's a systems condition , so I think it's more likely to be exponential then flip ( like catastrophe theory and also tipping points in climate science)

Like vertigo? By which I can't tell whether it is balance-related or stimulation-related (ie like watching a fly whizz round the room is like a normal person being at a strobe-light disco) but it obviously has nothing to do with heights