Trial By Error: Professor Jonathan Edwards’ View of ME (includes discussion of exercise and long-term harm)

The early years of my illness are entirely consistent with downward spiral causing increasing and permanent worsening. It continued until I gave up trying to function normally. Then I stabilized.

The later years are consistent with occasional and/or mild overexertion not being an obvious cause of permanent deterioration, although I am slowly getting worse over time and it could be due to overexertion, just not in an immediately obvious way. In the later years I always had the possibility to withdraw and rest after overexertion and was never regularly forced to function despite wanting to rest.

PS: I remember one more instance of apparently getting permanently worse after overexertion and that was when I took stimulants and tried to work. It seemed to work for a for weeks, then I had a six month crash and I'm not sure if I ever got back entirely to the previous level of health.
 
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Jonathan Edwards said:
I think this could be an extension of what I had suggested maybe should be done prospectively with long period actometry. I am hopeful that Oystein Fluge may have started something like this.
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They are doing an actometer study at the moment, and also testing i believe lactate levels (maybe more just heard it from an patient)

They are not studying overexertion however, just the validity of actometer as an objective marker in ME-studies i believe
 
It appears that repeated overexertion does not desensitize the patient towards exertion as some seem to think, but it sensitizes them.

There also seems to be something like a daily activity limit, after which activity is overexertion.

GET is designed to make patients worse, first getting them to reach the limit and getting them to repeatedly exceed it while warning signals are labelled as misperceptions or catastrophizing.

I don't think it's a coincidence, my suspicion is they started from the assumption that whatever patients were doing and believing was the cause of the illness, and that therefore the cure was to do the exact opposite.
 
Between the current activity levels and the idividual daily activity limit there may be room to increase activity levels for some patients, but I don't think there is usually much room, and it seems overexertion is a more common problem.

Activity within the tolerable limit seems to be beneficial.
 
Trish said:
I wonder whether those who can 'exercise' are lucky enough to have room in their energy envelope after carrying out their necessary activites of a probably much reduced daily life. For example someone who has mild ME and doesn't have to work and care for a family, might be able to add a regular walk or cycle ride for 'exercise' that still stays within their energy envelope.
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That's me, although I'd still describe myself as moderate. I'm lucky that I can prioritise walking above anything else to the benefit of my physical and mental health.
 
Jonathan Edwards said:
But that does not amount to formal evidence for harm.
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The fact that 'harm' – in the shape of worsened symptoms over an extended period – can be caused by different factors adds another layer of difficulty in establishing causation. For instance, certain patterns of sleep have at times made my symptoms worse than exercise, as have common viruses, workplace stress, and reactions to food.
 
Kitty said:
For instance, certain patterns of sleep have at times made my symptoms worse than exercise,
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Are you sure that a cyclical feature of the illness does not cause a correlation between changing sleep patterns and other symptoms? I went through a stage when I thought I could predict a coming relapse by a change in sleep and waking. I have forgotten the details.
 
I know what I'm about to say here has an amusing edge to it, but there is also a serious aspect to it regarding exercise and energy envelope.

A while ago I posted about our young dog being a "power assistance" dog. But though spoken mostly in jest, that is proving very to be very true, and to me rather informative.

I'd noticed that with our dog on her lead, my wife strides out pretty smartly, and was wondering what was going on. But she still struggles when walking on her own, with the effort that involves. Which fits with what I've always concluded regarding my wife's ME/CFS - that her body cannot deliver the energy to wherever it is needed at the rate it is needed, whatever the reasons for that may be. Basically when our eager little dog is tugging on the lead, she is (trust me!) very powerful, and very likely provides more motive power than my wife can. So for the same power from my wife, she can go significantly faster with our dog than without. So her ME/CFS does seem to be more about power availability than about locomotion capability.

There are going to be all manner of medical reasons why energy does not get to where it is needed at the rate it is needed, be it metabolic issues, signalling problems, whatever, but I'm pretty sure that for my wife at least, that is the fundamental limitation.
 
chrisb said:
Are you sure that a cyclical feature of the illness does not cause a correlation between changing sleep patterns and other symptoms? I went through a stage when I thought I could predict a coming relapse by a change in sleep and waking. I have forgotten the details.
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No, I can't be sure. I just know that the longer I sleep after 7am, the more at risk I am for a crash that can last for anything from a few really horrible hours to several days.

It happened a couple of weeks ago – I'd been kept up late by noise outside, and slept until almost 11am. It took me four and a half days to recover from the sore throat, headache, and limp muscles; whereas recovery from a 2km swim is typically 48 hours' rest at the moment, with far fewer actual symptoms (slightly swollen neck glands the next morning, which subsides a couple of hours after waking).
 
I hope some day we will understand how the disease cud worsen by sustained overexertion (and in some cases just a gradual worsening anyway)

Its one of the most perplexing sides of ME to me

But it should also be a big clue to follow, when we know more. Now we know too little for it to make any sense in any theory
 
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Jonathan Edwards said:
Harm implies causation and formal evidence of causation is tough.
It also implies more than worsening - it implies some sort of damage. I don't think we have that.
But that does not meant that harm is not real.
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seem to remember Dr Bateman in her recent presentation about activity and exercise intolerance,
here
https://www.s4me.info/threads/video...hronic-fatigue-dr-lucinda-bateman-2019.11960/

when talking about 2 day CPET(?) says that on the second test pwME are worse because 'we hurt them' on the first test.

Also that people who are able to keep within their energy envelope can 'improve' over time(ie less symptomatic), although not necessarily able to increase their envelope.
 
Barry said:
I know what I'm about to say here has an amusing edge to it, but there is also a serious aspect to it regarding exercise and energy envelope.

A while ago I posted about our young dog being a "power assistance" dog. But though spoken mostly in jest, that is proving very to be very true, and to me rather informative.

I'd noticed that with our dog on her lead, my wife strides out pretty smartly, and was wondering what was going on. But she still struggles when walking on her own, with the effort that involves. Which fits with what I've always concluded regarding my wife's ME/CFS - that her body cannot deliver the energy to wherever it is needed at the rate it is needed, whatever the reasons for that may be. Basically when our eager little dog is tugging on the lead, she is (trust me!) very powerful, and very likely provides more motive power than my wife can. So for the same power from my wife, she can go significantly faster with our dog than without. So her ME/CFS does seem to be more about power availability than about locomotion capability.

There are going to be all manner of medical reasons why energy does not get to where it is needed at the rate it is needed, be it metabolic issues, signalling problems, whatever, but I'm pretty sure that for my wife at least, that is the fundamental limitation.
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E-bikes give the same effect ;)
 
Jonathan Edwards said:
Whether exercise in that sense is ever useful I don't know but I suspect keeping up some level of activity above what is absolutely necessary may be a way to maintain reserve.
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I think I understand your point, but “absolutely necessary” seems to be a rather woolly term that is likely to mean different things to different people.

I also think it’s important to stress that many of us are never able to do what we consider to be absolutely necessary (which I’m sure you appreciate).

Exertion for me is occasionally taking my neighbour’s dog for a walk in my powered wheelchair when it’s warm enough for me to be outside. Is that absolutely necessary? I usually pay for it afterwards but I usually consider the price to be worth paying.

Sometimes I walk to the bathroom instead of using a bottle or using my wheelchair? Is that absolutely necessary? Does that count as exercise?

I also play the guitar, which is a physical activity that might be considered unnecessary. But learning to play the guitar has given me pleasure and my life purpose in a way that walking to the bathroom does not. In that sense I would say that playing guitar is more necessary for me than walking to the bathroom. I might even suggest that it is necessary to do some activities which are not absolutely necessary, even if that means not doing some activities which are absolutely necessary.
 
Jonathan Edwards said:
Harm implies causation and formal evidence of causation is tough.
It also implies more than worsening - it implies some sort of damage. I don't think we have that.
But that does not meant that harm is not real.
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In which case why do we only talk about harms? Surely if a treatment incurs significant worsening of symptoms, that can still have significant negative impact on a person. Doesn't the focus on harms simply prove a get-out-of-jail card for those cases where significant worsening has occurred?
 
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