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

Some practitioners are incorporating chronic fatigue rehabilitation research into their treatments

https://scienceline.org/2022/08/phy...the-wake-of-a-tsunami-of-long-covid-patients/

 

And yet

The disconnect on understanding how little people can do on normal household living and yet they are throwing in increasing exercise as if its important for their recovery. Sure doesn't sound like they get it at all.

 

Hopefully once they grasp the concept of PEM and the need to look at total activity and not just what happens in their clinic or clinical sessions, it is going to be much harder for clinicians to miss completely the issue of activity ceilings and the risks of significantly worsening an individual’s health.

However despite this for some the belief that exercise as a universal panacea will be to strong for them to hear the patient’s reality.

Further for some/many using pacing and activity management to create a sense of improvement during the treatment process will see them on discharged believing they are on a slow but ongoing progress back to ‘normality’, when in fact their underlying condition leaves them with an activity ceiling which they will crash into at some point or when life throws things at them demanding unavoidable increases in activity.

The relentless positivity of a well meaning clinician does not always serve the patient well, when even sorting the daily and weekly crashes does not prepare for the cycles over several years either due to gradually increasing activity over months to a new activity ceiling or due to the fluctuations in the underlying condition that we have little or no current understanding of.

(Note, well intentioned clinicians and fixed term treatment blocks of a couple of months have not served patients well when we are looking at a time scale of years and decades.)

 

Trial By Error: Todd Davenport on Post-Exertional Symptom Exacerbation in Long Covid and ME/CFS

https://www.virology.ws/2022/08/22/...ptom-exacerbation-in-long-covid-and-me-cfs-2/

 

No ME patient will learn anything new, he does try to rebrand pacing and PEM. The more insidious thing he says unchallenged is that ME/CFS patients are de-conditioned, its the one concerning belief he has that I spotted as it went on. Nothing new in here just some acceptance of the symptoms.

 

I'm still waiting for one of these oiks to grasp that patients will always try to do more than they can, whether through frustration, cussedness, or sheer bloody necessity, and that any therapist who's actually interested in helping them needs to address it.

 

I'm sure this is almost universal in pwME. How come no authority has come out and said it?
It's also at great tension with the idea of this condition being psychosomatic. I'm going to start framing my illness this way. "I get PEM after many activities I want or need to do, and tolerated before becoming ill. I went from working full-time and playing ice hockey to needing care from others. I will recover if I rest for several days, but I rarely have the willpower to stop working on projects I enjoy, and the luxury of not having any obligations."

 

I can't watch videos, but as a bedbound patient I am definitely deconditioned. It would be amazing if I could recondition. But even if I would be able, it will not solve the disease. I however do not think it's controversial to talk about deconditioning, so I'm curious in what context and how he talks about it.

 

He is right.

This is precisely what is needed - better measures meaning that research 'gets to the right point'.

And for the condition to be explained in terms of 'baseline' - that is our 'disability' and the limitations we need to communicate and have understood by others around us. Most I speak to currently close me down and say that is 'talking about your illness' (which is apparently banned - a strange concept, but seemingly common in those who will themselves have no banned subjects they can't talk on).

Not being able to have anyone prepared to hear such boundaries or limitations, combined with them being so brutal and the impact of breaching them so brutal is 'the issue' because we have no 'safe space' in the world (unless you are lucky enough to have angel neighbours, family, friends and anyone you'd be unable to avoid). And our access being limited by our health in this way is disacknowledged. It's not just invisible disability, it's disregarded disability.

 

This bunch is brilliant.

I'd like to put on their agenda that I'd hope they might use their techniques and approach and curiosity to look into rest: ie the 'healing' part. I think insufficient rest for me is even more brutal in impact than the exertion in the first place. And the rest is proportioned by the exertion before it.

I think that if they studied this in straight after activity, different conditions, interruptions etc. then they might have a full picture for the condition in mild/moderate to the extent it provides some useful indicators for severe. ie where severe's 'rest' = the imprint of 'exertion' for mild due to being in a crash or some light or noise presenting an exertion.

Anyway my point being that if they can then map these 'stages' in the exertion-rest patterns and what pinpoints what we actually have some decent indicators to control variables in other research. It feels lynchpin.

I guess for example that a cortisol/synacthen test might be influenced by this: e.g. blood test for 9am cortisol is all v well, but if you have to get up and travel which is an exertion that you'd take a week in PEM to recover from (and maybe 2 days rest before, if you can) what is that actually measuring in someone with severe ME? And do people travelling different distances etc have different 'already exerted' in most experiments therefore?

Peak cortisol xmins after synacthen injection probably more sure of what it is? That sort of matters re: feeding into protocols and test developments, if someone needed e.g. cortisol supplementation how do you check what timings and amounts at those times should be currently without the testing process influencing the results more than the condition you plan to measure?

 

We have an issue where subject-areas need to be open-minded that just because their expertise is the key to unravelling the issue, it doesn't always mean the answer will be a treatment that is their usual 'wheelhouse'. e.g. the person who finds that exercise harms due to PEM needs to get their head around the fact that they either offer treatments that are antidotes to exercise or are broad-minded enough to look for, suggest and combine with those who could have treatments. ie it would be powerful if they were methodological specialists for others' potential useful treatments.

It would be a shame if what seems to be a great start to a scientific way of thinking about measuring and studying PEM and ME didn't continue to be said research into getting to the bottom of things but instead cut short into as you say other 'sticking plasters' that don't work long-term. You can probably build up your muscles with things that are PEM-avoidant (when milder) for a longer period of time than you can with aerobic (where it becomes obvious you are getting less fit each time you train) - but if they aren't looking at the 6months, 1yr, 2yrs down the line impact of it then it is just another type of delayed impact being created and mis-thought of as 'found something that works' because of the measurement time period being wrong.

 

Link to the thread discussing the blog series from the Workwell foundation which is what Todd Davenport and David Tuller are discussing in the video in the above post on Trial by Error/Virology

https://www.s4me.info/threads/jospt...vid-4-part-series-2022-davenport-et-al.24403/

 

This approach worries me a bit. One of the most important things I've learned in 46 years of illness is that I can't predict anything, and there's no point trying.

I can give myself the best chance of "surviving" an unavoidable major activity by resting pre-emptively and making sure I schedule as little as possible afterwards, but I still have no idea how long it will take to get back to my baseline*.

Occasionally, something requiring major activity will just happen unplanned. It might floor me for weeks, or simply need a couple of quiet days to recover. Or it might trigger a severe crash, which is massively out of proportion to the activity and will leave me struggling and plateaued for months. Could be any of the above, or a new variation on the theme, but I'm glad no therapist ever suggested to me that I'd get to a point where I could predict my "return to basic activities of daily living". I'd feel like a complete failure, when in fact this unpredictability seems to be completely normal in ME.


* 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.

 

Good point - I read it differently. One thing would be that it would give 'official back-up' to some pretty outrageous to others claims of how long we need to rest completely in order to recover from a short chat or an argument or a small activity. Or bigger ones, and make it easier to say 'no' e.g. in workplace with clarity, rather than having to ramble on about payback noone cares about (as they look at you wondering why you don't pick up your share of the boxes to be moved).

You are right it depends very much how it is done if it is for individuals - I find it chilling the idea that some people get given such intricate and foresnic diaries to fill out in some clinics, v instrusive. But if someone can test you individually, and do catch-ups that can see how you are progressing objectively that might stop the 'functioning but making your health worse' situation too many of us get put in where we are powered by pat on the backs and ignorance of social etiquette, peer pressure or just lack of help etc .

Predicting on the other hand brings us back round to that instinctive temptation of the system - which now can't be denied by anyone surely - that 'missed targets' will be blamed on the patient. There is a whole load of work to do there, to get what they mean correct - there is the unexpected events, other people, and comorbidities that interact really badly with ME.

The last thing we need with something with so many variables is something that takes averages of a heterogenous sample and calls them norms and uses assumptions based on these instead of direct individual measurement to make promises on other people's bodies. Both for giving advice, but also for research at this stage surely - where we don't really know if there are different types etc.

 

Baseline is a misnomer. It suggests a defined constant datum.

In reality it's a bit like having sealevel differing depending on whether it's a high tide / low tide/ storm
Ever varying but defined as the same .

 

Yup! A tide with a five-metre range that makes the rivers run backwards twice a month, and can flood areas miles inland during the worst storms.

Yes, it's true that it ought to be possible, specially in more experienced patients, to identify useful indicators of the state of their ME (or tidal phase!), and it would definitely be useful if practitioners learned about and understood these.

The nearest I've ever got is the swollen neck glands and the weight loss I used to experience. Lumpy glands meant Forget Your Plans For Today, and unexplained weight loss meant Buckle Up, The Next Few Months Are Going To Be Fun (Not).

 

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.