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

[Barry]

I also think that although PEM is a very valid indicative symptom of ME/CFS, it may be simply a subset of the broader symptom - the body's abnormal response to exercise. I think it is going to be true of all people with ME/CFS that their bodies respond abnormally to exercise, even if some maybe do not experience PEM. So although I believe PEM is very important, I do wonder if we sometimes should focus more strongly on the broader symptom, and simply consider PEM to be a part of that.

 

[Wonko]

The whole 'harm' thing is bizarre, at least to me.

If something 'negatively' impacts symptoms, to an extent where it removes or reduces something that person needs, or wants, to do - then that is harm.

If something 'negatively impacts' someone so they have to reduce the hours they work, or stop working, then that is 'harm' - as it would 'negatively impact' their life.

If something 'negatively impacts' someone and increases symptoms so they can't get upstairs to read to their kids - then that is 'harm'.

The whole there must be observable tissue damage thing is just ridiculous (IMO) - there are other forms of 'harm' - reduction in quality of life being among them.

 

[Hoopoe]

The psychological harm of continuously trying to function normally because that is what the patient is told is needed, only to end up failing every time, also needs to be considered. I suspect it can be bad enough to lead to suicide.

 

[Jonathan Edwards]

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 to little for it to make any sense in any theory

I agree

 

[Jonathan Edwards]

If something 'negatively' impacts symptoms, to an extent where it removes or reduces something that person needs, or wants, to do - then that is harm.

I agree bit it is easy for the other side to ask for a more stringent definition harm.

 

[Barry]

I agree bit it is easy for the other side to ask for a more stringent definition harm.

Why?

 

[Jonathan Edwards]

Why?

Because, particularly if a case is being made for ME being 'physical' with physical changes, medics are likely to interpret 'harm' as physically demonstrable damage. Whether or not that is legitimate isn't the problem.

 

[Ravn]

The Workwell case studies (I think there are several?) seem to be the best-documented pointers towards exercise causing harm to the aerobic system, beyond short-term PEM (aerobic performance on CPET worsened after several months of exercising). Not cast-iron evidence of course but that would be difficult to obtain in an ethical manner.

Though theoretically any prospective or longitudinal ME study could include patients recording any time spent in PEM (not that they should try to trigger PEM, just record the sort of PEM episodes that happen despite our best efforts). This could then be matched against overall improvements/stability/deterioration.

I'll counter that by saying in some cases exercise helps some sufferers, it has certainly helped me.

The definition of 'exercise' matters here. I think when we talk about the detrimental effect of exercise most of us actually mean the detrimental effect of exerting beyond our individual energy envelope and triggering PEM. So if somebody triggers PEM after walking round the block 2 times but finds a daily walk around the block 1 time makes them feel better there's no contradiction. Exercise within your energy envelope is fine. Exercise beyond it is not.

 

[Kitty]

The definition of 'exercise' matters here. I think when we talk about the detrimental effect of exercise most of us actually mean the detrimental effect of exerting beyond our individual energy envelope and triggering PEM. So if somebody triggers PEM after walking round the block 2 times but finds a daily walk around the block 1 time makes them feel better there's no contradiction. Exercise within your energy envelope is fine. Exercise beyond it is not.

Indeed, but I'd argue it would help us if the word 'exercise' could be banished and replaced by 'activity'. That's a much more inclusive term when it comes to discussing the very broad spectrum of ME.

 

[Snow Leopard]

The definition of 'exercise' matters here. I think when we talk about the detrimental effect of exercise most of us actually mean the detrimental effect of exerting beyond our individual energy envelope and triggering PEM. So if somebody triggers PEM after walking round the block 2 times but finds a daily walk around the block 1 time makes them feel better there's no contradiction. Exercise within your energy envelope is fine. Exercise beyond it is not.

Exercise also tends to imply above normal intensity of activity, than say, putting away the dishes.

 

[JemPD]

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.

such a good idea Trish

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 proved a get-out-of-jail card for those cases where significant worsening has occurred?

It's a bummer. But perhaps we need to rephrase what we say so that instead of saying 'causes harm'....

I just considered a few alternatives but they all seem to have the same problem, because until we know what causes ME, we can't really say 'causes permanent worsening of symptoms' or causes 'currently irreversible worsening' either can we? without it being challenged as 'no scientific evidence'.
Am I right in thinking that in scientific terms ''permanent' worsening of symptoms' would be seen in much the same way as 'harm' @Jonathan Edwards ?
...so we'd need to show it was objectively observable damage that could not be undone? & at the moment although we know it's enduring, it could be reversible if we could find the exact biological fault, so we have no scientific evidence that it's "permanent", despite it decimating peoples lives for decades. is that correct?

The whole 'harm' thing is bizarre, at least to me.

If something 'negatively' impacts symptoms, to an extent where it removes or reduces something that person needs, or wants, to do - then that is harm.

If something 'negatively impacts' someone so they have to reduce the hours they work, or stop working, then that is 'harm' - as it would 'negatively impact' their life.

If something 'negatively impacts' someone and increases symptoms so they can't get upstairs to read to their kids - then that is 'harm'.

The whole there must be observable tissue damage thing is just ridiculous (IMO) - there are other forms of 'harm' - reduction in quality of life being among them.

@Wonko I agree that what happens to people should be covered by the word harm. But given that it isn't being accepted in that way...
I'm so glad you're both knowledgeable and shrewd Jonathan! Thank you for the vast amount of thinking & effort you're putting in.

 

[JemPD]

Exercise also tends to imply above normal intensity of activity, than say, putting away the dishes.

agreed.

That's why the MEA's description of 'exercise induced muscle fatigue' in their 'what is ME?' information, is so unhelpful imo... because everyone on the planet has muscle fatigue after the common understanding of 'exercise'.... "yes dear, my leg muscles are knackered after I go for a run too, perhaps I have ME"

 

[Kitty]

That's why the MEA's description of 'exercise induced muscle fatigue' in their 'what is ME?' information, is so unhelpful imo... because everyone on the planet has muscle fatigue after the common understanding of 'exercise'.... "yes dear, my leg muscles are knackered after I go for a run too, perhaps I have ME"

It also encourages people to think of exercise and activity as different things, which is very unhelpful when you're trying to learn to manage ME. In the last eight days I've swum 1.9 km and put up the Christmas decorations; the later was hugely more demanding than the former, but because it doesn't sound as if it should be that way around, it can be misleading to both patients and doctors.

 

[Samuel]

If you are self-employed like I was getting through the days events made it worse.

actually, you do not need to be self-employed. or employed. or to get through what normal folk consider events.


i also want to emphasize that it is not just exertion.

to me, the debate about exertion is over those who have a problem with exertion. this might seem like this is the debate that should be had. almost tautological.

but what is left out? take a second to guess...

...
...
...


as one well-known example, whitney is not engaging in what normal folk call exertion when he is bombarded by tiny noises.


to me, the debate about exertion is an example of the overton window: they keep us talking about exercise, which solidifies the implicit claim that the disease is basically those who are too lazy to do a morning jog.

the fallback position is at most, "ok, some have trouble getting to the kitchen sometimes". [implicitly: they are *even more* subhuman.]

that is just a step next to the exercise position on the overton window.


whitney is still unseen and unheard. the opposite end of the overton window scale.


that is one reason i have a problem with debates about exertion. it shifts the overton window in the wrong direction.


such debates keep from acknowledging the existence of a complex disease with a wide range of severity that can always get worse.

 

[James Morris-Lent]

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.

That is an apt description of my experience. And as I've fortunately improved in the last ~2 years to the point where it's worthwhile to put substantial energy into studying and gaining skills for a future career, I have actually reduced physical activity relative to the period before that.

 

[James Morris-Lent]

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.

Same experience for me. I can do a fair amount of activity as long as its under some threshold of sustained power (I think that would be the right unit) generation. If I go over that, I feel bad. I can walk five miles without too much trouble but jogging 400m or trying to do as many pushups as I can would lead to me oozing on the couch for about the next 3 days.

 

[James Morris-Lent]

Torture.

GET for ME/CFS is in this category. I don't see a way around it.


A: GET is not an effective treatment, as shown by PACE.

B: Patients experience substantial distressing protracted symptoms upon relative exertion. This is part of the syndrome definition, and also a key tenet of the PACE framework.

C: Given A and B, administration of GET is deliberate infliction of potentially intense and protracted physical and psychological distress upon the patient, with no reasonable belief of benefit to the patient. This fits within a reasonable definition of torture. Harm in terms of persistent objective physical damage is not needed.

 

[Barry]

That's why the MEA's description of 'exercise induced muscle fatigue' in their 'what is ME?' information, is so unhelpful imo... because everyone on the planet has muscle fatigue after the common understanding of 'exercise'.... "yes dear, my leg muscles are knackered after I go for a run too, perhaps I have ME"

Yes I fully agree with that, and I think it is that sort of "explanation" that leads to disbelief and disrespect from healthy people, or even unhealthy people who don't have ME/CFS. I get muscle fatigue following exercise and it can last for some time, but it is the healthy sort. For my wife it is very different, exercise does not improve her physical health after a transient dip into fatigue and aching, but instead just pulls her down followed by a struggle to get back to where she previously was. It is very different and quite a signature of ME/CFS.

 

[rvallee]

It also implies more than worsening

Then what would be the formal term for this? Is there even one? Because this has been a contentious issue for decades, BPS proponents dismissing worsening as essentially irrelevant even though it can lead to dramatic reduction of quality of life, sometimes permanent and leading to death.

Seems we are blocked from progressing by basic vocabulary issue at every turn. Worsening is very significant in this disease. It is pretty much the biggest deal, in fact. It's weird and rare but we have to resolve those basic communication issues. We're not in that ST:TNG episode where they have to speak in parables out of necessity, those are workable issues that really should only plague immature fields of science, not millennia old medicine.

If you don't mind me I will be screaming into the void for a while or two.

 

[Barry]

Same experience for me. I can do a fair amount of activity as long as its under some threshold of sustained power (I think that would be the right unit) generation. If I go over that, I feel bad. I can walk five miles without too much trouble but jogging 400m or trying to do as many pushups as I can would lead to me oozing on the couch for about the next 3 days.

Yes, my wife can walk 2-3 miles on a good day, but is influenced significantly by whether the walk is continuous, or with frequent stops to take photographs. In the latter case it's as if the short but frequent stops allows for brief mini-recoveries, and as if she somehow benefits from the reduced average power requirement.