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

Trish said:
I think it's important to qualify what we mean by 'exercise'. I can't see how anyone could exercise beyond their current energy envelope every week without repeatedly crashing.
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Exactly, I’ve known people at varying degrees of severity and obviously what they can do varies along with it. “Exercise” can be sitting forward to drink water for one and a mile walk for another. It’s all about your personal limitations.
 
DigitalDrifter said:
I'm disappointed that Jonathan Edwards didn't mention that exercise harms ME patients, sometimes indefinitely as in my case.
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I am a bit disappointed, @DigitalDrifter, that you refer to me in the third person when I am here on the thread ready to chat about anything, but no matter.

I have looked at all the evidence I can see for the effect of exercise on ME. I have to stick to what I think we know. I would break that down into:

1. A key feature of ME is that exercise is hard to tolerate and leads to payback in terms of PEM.

2. There is enough of a suggestion from surveys and other sources to think there is a very strong suspicion that graded exercise therapy can make people worse for long periods.

3. Despite this, we have no reliable evidence for exercise causing long term harm and it is very hard to see how that could be established for sure without unethical trials. Inidividuals have found themselves worse long term after periods of exertion but it is impossible to know if one caused the other.

4. From what I hear a lot of PWME find that continuing with a certain level of activity is manageable and maintains quality of life. That activity is physical exertion. 'Exercise' tends to imply exertion that is more than you actually need to do at the time to get through the days events. 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.

5. What I am clear about is that there is no justification for exercise based treatments - either theoretical or in terms of evidence. I think I make that clear in my essay.
 
Jonathan Edwards said:
we have no reliable evidence for exercise causing long term harm
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A tangential thought in a twisted twitter world of provocative sound bytes and faux social media news...

An agent provocateur for the BPS brigade would use this quote out of context - Professor Jonathan Edwards says 'we have no reliable evidence for exercise causing long term harm' - to bolster their 'GET is good' narrative (and egos, reputations, and bank accounts) while simultaneously undermining the 'too much exertion causes harm' patient narrative and dismissing patients as reliable sources for its evidence - and then by extension bolstering BPSer's over-riding 'fear of exercise' psychogenic narrative.

I know this was not your intent, it is more a reflection of a heightened awareness of the twisted nature of information via social dispersion at this time - and how, without equitable research funding, words matter that much more. Even if those words come from patients and their lived experience.

It is sad state of affairs that ME patients have had to become hyper vigilant about language in efforts to keep harmful health 'care' at bay. Perhaps partially a reflection of mass medical PTSD.
 
I found the resulting discussion valuable and interesting. "true ME" does seem like attempt to provide an answer and explain what is happening and why but like so many other such attempts it turns out to be incoherent.

If patients did not feel as abandoned and disbelieved, they might not need cling so much to an idealized narrative of true ME.
 
Jonathan Edwards said:
I have looked at all the evidence I can see for the effect of exercise on ME. I have to stick to what I think we know. I would break that down into:

1. A key feature of ME is that exercise is hard to tolerate and leads to payback in terms of PEM.

2. There is enough of a suggestion from surveys and other sources to think there is a very strong suspicion that graded exercise therapy can make people worse for long periods.

3. Despite this, we have no reliable evidence for exercise causing long term harm and it is very hard to see how that could be established for sure without unethical trials. Inidividuals have found themselves worse long term after periods of exertion but it is impossible to know if one caused the other.
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Has anyone unbiased looked into the effects of exercise long term on ME-patients? I mean in the graded exercise-studies the ones who get worse end up being omitted from the study (if I dont remember wrong this happened in PACE).

Also, based on my own experience; u need to exercise over a period of time when in "mild/moderate" to get a permanent worsening. I have done this three times now, and due to how closely related the drastic reduced functioning level has been to exercise I know it has made the chronic condition worse. When u are severe, overexertion over a lesser amount of time is needed to cause permanent worsening, but u cant study the effect of exercise on severe patients except retrospectively.

My point is, it`s really hard to do research on the effect of graded exercise on ME-patients because of the amount of days u need to overexert to produce a permanent worsening. And who the hell would volunteer for that? The ones who push themselves to hard are likely too pull out of the study too.

I think this is one of the situations where we have to accept retrospective studies, and to just trust the patients.

And so personally I will say it has been a disaster to not trust my own experiences with graded exercise, and keep trying it cause everyone in healthcare says it works.

It makes me really angry that they dont listen to us
 
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Jonathan Edwards said:
From what I hear a lot of PWME find that continuing with a certain level of activity is manageable and maintains quality of life. That activity is physical exertion. 'Exercise' tends to imply exertion that is more than you actually need to do at the time to get through the days events. 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 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.

Many of us have never had that luxury of a gap between necessary activity and envelope that can be filled with 'exercise'. Rather we find ourselves right on the edge of stepping outside the envelope all the time, and suffering when necessity forces us beyond it.

Perhaps there is a way of carrying out a 'study' of the effect of long term repeated pushing over the limit into PEM, compared with staying rigorously inside the envelope and avoiding PEM. Perhaps it could be done retrospectively, comparing the long term changes in severity of illness against frequency of episodes of PEM.

If there were a correlation between worsening over years and higher frequency of episodes of PEM over the years, that might suggest repeatedly pushing over one's limit has a long term detrimental effect.
 
Marky said:
Also, based on my own experience; u need to exercise over a period of time when in "mild/moderate" to get a permanent worsening. I have done this three times now, and due to how closely related the drastic reduced functioning level has been to exercise I know it has made the chronic condition worse.
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Yes, this was my experience too. Cognitive decline was not an issue for years until I started exercising again. My PEM symptoms amplified over the years.
 
ScottTriGuy said:
It is sad state of affairs that ME patients have had to become hyper vigilant about language in efforts to keep harmful health 'care' at bay.
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I know what you are saying but I would challenge this. Patients are not being hyper vigilant in the important sense that they are often overegging the evidence and that is absolutely the best way to get the medical profession to ignore everything they claim. The 'unhelpful beliefs' get wheeled straight in.

If I were to stand up and say we know that exercise causes harm the psychologists in the audience would turn to each other and giggle and say 'well the patients have pulled the wool over his eyes, haven't they'. I have seen it happen even when I produce factual evidence, but in that situation have been in a position to provide the evidence and hope that anyone genuinely neutral might believe what I said.


Maybe a 'too much exertion causes harm patient narrative' needs to be questioned. We shouldn't be dealing with narratives, just with evidence.

If anyone out there suspects that I am pushing a patient narrative for political purposes I cease to be of any use to the ME patient community. I would cease to be invited on to advisory and review boards. As it is I have invited on to a lot more boards than I had expected precisely because people know that I have no 'agenda'.
 
Trish said:
Perhaps there is a way of carrying out a 'study' of the effect of long term repeated pushing over the limit into PEM, compared with staying rigorously inside the envelope and avoiding PEM. Perhaps it could be done retrospectively, comparing the long term changes in severity of illness against frequency of episodes of PEM.
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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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