What Mistakes are Being Made in ME Research?

Hoopoe said:
We need a test to document the inability to sustain exertion over time. Something that can show that in comparison to an average person of the same age, people with ME struggle to keep going.
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Agree with this. I wonder if researchers could simply do a very low intensity activity and monitor patients and controls over time for differences. Perhaps this could even be done on an exercise bike. Then taking blood samples every 10 minutes to test various parameters such as lactate.

It's a bit like that study with actometers, where it only became apparent after a couple of days that patients are unable to maintain high activity levels. Wonder if anyone could try to replicate this in a bigger sample.
 
ME/CFS Skeptic said:
Agree with this. I wonder if researchers could simply do a very low intensity activity and monitor patients and controls over time for differences. Perhaps this could even be done on an exercise bike. Then taking blood samples every 10 minutes to test various parameters such as lactate.

It's a bit like that study with actometers, where it only became apparent after a couple of days that patients are unable to maintain high activity levels. Wonder if anyone could try to replicate this in a bigger sample.
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I wonder if you even need the blood monitoring?

A simple approach might be to get mild or moderately affected patients, plus a control group, to wear monitors for four weeks whilst they're living their normal lives.

Then for two weeks, they visit a swimming pool every weekday. They walk through the water across the width of it a few times, rinse off the pool water and go home.

Then they wear the monitor for another four weeks of normality.

This might be enough to show a clear signal in the overall activity pattern of the ME/CFS patients.

It's a relatively safe activity even for people who're unsteady on their feet (non-swimmers can wear arm floats and hold a kickboard), it doesn't need specialised equipment, you can easily standardise how much walking people do, and it can even be done during public swim sessions when the pool's not laned off—groups do it for joint replacement rehab at our local one. Some university centres have their own pools too.
 
Kitty said:
I wonder if you even need the blood monitoring?

A simple approach might be to get mild or moderately affected patients, plus a control group, to wear monitors for four weeks whilst they're living their normal lives.

Then for two weeks, they visit a swimming pool every weekday. They walk through the water across the width of it a few times, rinse off the pool water and go home.

Then they wear the monitor for another four weeks of normality.

This might be enough to show a clear signal in the overall activity pattern of the ME/CFS patients.

It's a relatively safe activity even for people who're unsteady on their feet (non-swimmers can wear arm floats and hold a kickboard), it doesn't need specialised equipment, you can easily standardise how much walking people do, and it can even be done during public swim sessions when the pool's not laned off—groups do it for joint replacement rehab at our local one. Some university centres have their own pools too.
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Probably one of the worst activities for me. Even when I was very fit with everything else before I was ill going to the swimming pool used to leave me exhausted in a way nothing else would. And I wasn’t doing a lot of swimming , there must just be something about the resistance and water etc

then add in the showering and changing. When I was moderate these were activities above all I had to wait until I could, first example I’d end up late on a night out waiting for the moment to get ready. If you had to wash hair every day then that’s a biggie, along with hair length being a factor

Swimming pool changing rooms are far worse because you haven’t got your stuff as at home and you are trying not to get everything damp whilst in a small cubicle or busy room.

Some people always seemed to be naturally quicker and easier at changing in any sport thing so I suspect there are individual differences too. Then add in the allergy stuff and that some people might skip much if a shower off where others have skin issues adding in routines after pool and maybe extra skin care at other times due to it

finally there aren’t any easy to get to pools near me. Even when the old nearest one was open ten years ago it would have been a bigger trip than I’d make on any normal basis (think once every few months I’d go to a supermarket or cafe that far - I was very restricted into a small radius) and was in the middle of a park with a big walk from the car.

there might be uni pools and private gyms but unless you could ensure all had similar is there an issue there? And then there is the busy timetables of pools issue - lots run classes and might put aside two lanes (or not) during those times , if you were going to walk in a lane and not have addition of the noise of said classes etc you then have to pick a timing around tgat.
 
bobbler said:
Probably one of the worst activities for me.
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Yes, that's exactly the point. Everyone finds walking through water hard, so you need to do very little of it. Water based exercises don't load all the strain onto a few muscle groups, either, so are likely to provoke PEM but with a lot less pain than cycling.

The business of needing to go somewhere outside the home that may be busy or noisy is also part of the point—remember that horrible echoing sound you get in pool halls? It would be a study exposing people to multiple stressors, but some of them are likely only to have an impact on people with ME/CFS. It could show up factors that often tend to be hidden.

Exercise studies are only accessible to people who're mildly and moderately affected in the first place, and not even all of them. But people with enough capacity to volunteer to attend a centre for a stationary bike challenge are reasonably likely to be able to volunteer for something like this too.
 
Kitty said:
Yes, that's exactly the point. Everyone finds walking through water hard, so you need to do very little of it. Water based exercises don't load all the strain onto a few muscle groups, either, so are likely to provoke PEM but with a lot less pain than cycling.

The business of needing to go somewhere outside the home that may be busy or noisy is also part of the point—remember that horrible echoing sound you get in pool halls? It would be a study exposing people to multiple stressors, but some of them are likely only to have an impact on people with ME/CFS. It could show up factors that often tend to be hidden.

Exercise studies are only accessible to people who're mildly and moderately affected in the first place, and not even all of them. But people with enough capacity to volunteer to attend a centre for a stationary bike challenge are reasonably likely to be able to volunteer for something like this too.
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That’s interesting because it’s the opposite for me. It obviously varies with people

but no anything to do with swimming pools is likely to result in injury and uncontrolled PEM causing damage levels. There’s a reason I last was near a pool 14yrs ago. And even then only went in one day.

yet I’d have to walk pretty fast pretty often distances like 400-800m throughout certain days. And survived. And forced myself thru the gym. Both of which cumulatively caused deterioration. But neither of which based on PEM like fir kike had the impact at the time that swimming pool would.

and yes the muscle impact would almost certainly cause pain and other issues

I don’t know why but as I’ve said I’ve just never moved well in the water without impact even tho I’d obviously learnt how to swim properly and when I was one of the fittest in my year and did most other sports. I guess some just aren’t ergonomic for it. Because I had a friend who was the opposite- rubbish at all sport but swam like a fish. Something I can’t put my finger on with pools makes it a wild card re ‘exercise’ across people I think.

and I’d never in my whole time of having ME have been able to do that AND the changing room in one ‘go’ - if I ever went near a pool it was because on holiday and five hours earlier I’d put a bikini on, and didn’t need to dress after.
 
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bobbler said:
That’s interesting because it’s the opposite for me. It obviously varies with people

but no anything to do with swimming pools is likely to result in injury and uncontrolled PEM causing damage levels. There’s a reason I last was near a pool 14yrs ago. And even then only went in one day.

yet I’d have to walk pretty fast pretty often distances like 400-800m throughout certain days. And survived. And forced myself thru the gym. Both of which cumulatively caused deterioration. But neither of which based on PEM like fir kike had the impact at the time that swimming pool would.

and yes the muscle impact would almost certainly cause pain and other issues

I don’t know why but as I’ve said I’ve just never moved well in the water without impact even tho I’d obviously learnt how to swim properly and when I was one of the fittest in my year and did most other sports. I guess some just aren’t ergonomic for it. Because I had a friend who was the opposite- rubbish at all sport but swam like a fish. Something I can’t put my finger on with pools makes it a wild card re ‘exercise’ across people I think.

and I’d never in my whole time of having ME have been able to do that AND the changing room in one ‘go’ - if I ever went near a pool it was because on holiday and five hours earlier I’d put a bikini on, and didn’t need to dress after.
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nope stationary bike could be somewhere without the swimming pool noise, high ceilings and humid conditions. And you can stop and then it’s done if you need to finish early. I’ve done a bike when moderate. The amount of PEM and pain I’d imagine from a pool walk in swimming pool noise (it would have destroyed me frankly and then I’d have to scrape thru getting dressed and probably try and shower at home as I’d not be well enough at the time and it would be if well enough after a nap and..) vs a standing bike I don’t know but a short sharp walk it’s incomparable (but was enough as when car parks were moved further away at work I watched my heakth decline ridiculously fast)

I wonder now whether it is the momentum thing

pools stop those who rely on flow and momentum of their body so it causes all sorts of pains very quickly

I think I remember @Sean mentioning momentum being a ‘trick’ some of us use to throw ourselves about when we have to try and do something impossible due to exhaustion (and impact on gait).

I mean it’s this task that I can see I wouldn’t be able to cheat productivity out of where I could see for the first time having to be rescued. You can swing you arms or lollop or try and race thru to get some flow giving forward propulsion thanks to that water being like a weight working against you in a way you can’t control (like if you are swimming at least you can point hands a certain way and roll etc)

And I’d definitely even if I didn’t get stuck ten steps from the side unable to move further end up a few days in I’d definitely end up fainting in the changing room and/or sleeping through one even with 25alarms going from the payback and sleep disruption the exertion would cause. With the run up being a combination of both happening whilst I try to hide it

it’s given me the jitters



Anyway the idea of doing that daily - I’m not sure if I’ve ever been mild but I’d never have been near managing to turn up every day in a row for two weeks even when at my ‘best points’ (which would disappear and not be best if doing this as it would be immediate proper thick cant wake up or get up and whole body agony PEM for many days from one)
 
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I'm not sure of the point of walking in water, which is unusual for most people, and has complicating factors, as mentioned above. Wouldn't walking normally be sufficient for the test? It might require walking longer than the water exertion, but at least it avoids a lot of complications, complications that you also get with an exercise bike (unaccustomed movements, pelvic pressure, etc) or treadmills. Just walk the hallways or an outdoor trail or field. Stair climbing would be unaccustomed exertion for some people.
 
Creekside said:
I'm not sure of the point of walking in water, which is unusual for most people, and has complicating factors, as mentioned above. Wouldn't walking normally be sufficient for the test? It might require walking longer than the water exertion, but at least it avoids a lot of complications, complications that you also get with an exercise bike (unaccustomed movements, pelvic pressure, etc) or treadmills. Just walk the hallways or an outdoor trail or field. Stair climbing would be unaccustomed exertion for some people.
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Agreed (and from an ethics point of view then there is the possibility that walks that people can't avoid eg to get to a meeting but that nevertheless trigger PEM could then be included?)

I think it is interesting that it has been brought up, because @Kitty has articulated quite a 'button-pushing' situation that made me think of the thread that I think was started by @MelbME on what we can actually say for sure all/most pwme have in common.

It might be an idea to move it/my posts (including the suggested regimen) there?

It might be an interesting scenario to discuss as it seems one of those unique ones that might help us jointly tease out a few other things that are a bit ME-specific?

The idea of doing something every day without a break for 2 weeks in itself for example struck me as something I'd never have been able to do, even when I was at a stage where I was proud of still being in comparison to unfit nonpwme 'fit' in the sense of being able to do 'one thing' better (except of course the cheat there was that was due to having been an athlete before, I agree you can't develop strength or fitness once you've got it, only lose it)

Strangely too the idea of being plunged into a swimming pool and only allowed to walk almost made me panic and perhaps it is because I was in PEM with a lot of muscle pain at the time and at that point just trying to move didn't in itself seem vastly different to the idea of if I needed something knowing that moving would be like trying to battle my body through. I had mental images of trying to swing my arms to get some sort of way to move the bottom half. I can't imagine being in rolling PEM being thrown into that situation.

Plus of course I'm aware that when you have 'all over resistance' of the kind that being in a pool causes then the exhaustion is off the scale because you can't find some unused muscle when then hit by PEM to try and get around them and get something done.
 
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