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

[JemPD]

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.

yes I know just what you mean Kitty

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.

Precisely Barry, that's why I cringe every time Dr Shepherd says it (brilliant as he is at so much for us) I wish that could be rephrased, I have mentioned it to them but it clearly wasn't taken up on, but that's another thread.

@Samuel I never heard of the overton window I will have to look it up

 

[Diluted-biscuit]

Exertion is a much better word than exercise. As others have said, exercise implies pushing beyond ‘normal’ activity, like going to the gym. Something most of us could never do.

 

[DigitalDrifter]

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 ?

I believe that worsening of health (permanent or otherwise) is a symptom and doctors should have the basic respect for their patients to believe their symptoms.

We're not in that ST:TNG episode where they have to speak in parables out of necessity

That episode is called Darmok.

"Sokath, his eyes open!"

 

[Milo]

We are still at it ( gently) arguing about exercise, exertion and activity. What do patients know and experience, what the science has been able to prove seems to still be different.

Beyond exercise, I would argue that there are other ways for patients to crash themselves. In my case, activities that are a demand to the brain (thinking, talking, conversing, calculating) compounded by the demands of being vertical (standing worse than sitting) are a significant part of my disease and disability. I wish we could convey this in scientific literature- backed up by objective measurements.

 

[Sean]

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.

This.

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

One of the more disturbing aspects of this farce is that the psychs have been able to get away for decades with demanding levels of rigour from their critics that the psychs themselves have never reached, and cannot possibly reach.

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.

Activity, or maybe exertion, are better terms.

 

[shak8]

This.


One of the more disturbing aspects of this farce is that the psychs have been able to get away for decades with demanding levels of rigour from their critics that the psychs themselves have never reached, and cannot possibly reach.


Activity, or maybe exertion, are better terms.

or movement (of body).
for the brain...able to think.

 

[Ravn]

how to best provide evidence for permanent worsening due to overexertion/exercise

If anyone is ever going to do a prospective and/or longitudinal study to investigate the natural course of ME over time it should be technically easy enough to include a simple app where patients record once each day if they have PEM or not and maybe how severe it is, plus possibly if they believe the trigger to be mainly physical, cognitive, emotional, other or unknown.

Matched against the overall course of the disease that would give a lot of interesting data. Maybe it turns out that even frequent but brief and minor episodes of PEM don't do any long-term harm but severe or prolonged ones do. Or one type of trigger only leads to temporary PEM but another leads to permanent deterioration. Etc.

 

[Kitty]

Activity, or maybe exertion, are better terms.

The reason I prefer 'activity' is that it naturally feels more inclusive of mental work. That isn't true in a strict sense, of course; 'mental exertion' is perfectly understandable. But I think for ordinary patients, especially ones new to the illness, 'activity' is a friendlier word that still doesn't lose value when used more formally by researchers.

Moot point, I guess, and I'm sure there are folk who'll disagree!

ETA: it also feels more inclusive of ordinary things like eating, washing, and toileting.

We are diverging a bit from the original topic (Jonathans essay), but the subject is very important!

I agree, and I've contributed quite a bit to that – apologies.

 

[Marky]

If anyone is ever going to do a prospective and/or longitudinal study to investigate the natural course of ME over time it should be technically easy enough to include a simple app where patients record once each day if they have PEM or not and maybe how severe it is, plus possibly if they believe the trigger to be mainly physical, cognitive, emotional, other or unknown.

Matched against the overall course of the disease that would give a lot of interesting data. Maybe it turns out that even frequent but brief and minor episodes of PEM don't do any long-term harm but severe or prolonged ones do. Or one type of trigger only leads to temporary PEM but another leads to permanent deterioration. Etc.

In hindsight I think getting an actometer as a part of a prospective study, the moment u get the diagnosis, would tell us a lot. The trajectory from mild ME (for those whose who start there), to housebound to bedbound will be pretty striking if its caused by exertion/exercise.

One issue is that a lot of patients are already housebound when they get diagnosed, because it takes so much time identifying what one have. At that point many have already tried what usually works when you are sick; exercise - and that has made them a lot worse before theres any chance of enrolling them in a prospective study.

Ideally though questionnaires with actometer through a prospective study should be solid enough evidence for how activity/exercise can cause permanent worsening.

However even this would have to be ethically challenging, cause surely the researchers should tell the participants that they are doing a study to investigate if exercise/overexertion can cause permanent worsening of the disease.

 

[Amw66]

In hindsight I think getting an actometer as a part of a prospective study, the moment u get the diagnosis, would tell us a lot. The trajectory from mild ME (for those whose who start there), to housebound to bedbound will be pretty striking if its caused by exertion/exercise.

One issue is that a lot of patients are already housebound when they get diagnosed, because it takes so much time identifying what one have. At that point many have already tried what usually works when you are sick; exercise - and that has made them a lot worse before theres any chance of enrolling them in a prospective study.

Ideally though questionnaires with actometer through a prospective study should be solid enough evidence for how activity/exercise can cause permanent worsening.

However even this would have to be ethically challenging, cause surely the researchers should tell the participants that they are doing a study to investigate if exercise/overexertion can cause permanent worsening of the disease.

Exertion is not simply physical.

We find emotional exertion is one of the biggest energy rappers, perhaps as it more difficult to gauge and less easy to control / reign in.

Mental exertion can as bad as physical and can provoke overstimulatory sensory hell.

 

[Jonathan Edwards]

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 ?

It is not so easy.

There are lots of situations like rheumatoid arthritis where exertion causes pain but in the long term maintains mobility so worsening of symptoms occurs in the context of benefit.

Harm implies causation. Worsening of symptoms does not.

So 'correlated with worsening of symptoms' is not equivalent to 'correlated with harm'. We don't say correlated with harm because the word means we have already decided there is a causal link.

A harm is something, caused by an action or disease, that then itself causes subsequent worsening.

Demonstrating causation requires controlled conditions, and assessment free of bias.

 

[Kitty]

Harm implies causation. Worsening of symptoms does not.

Then we need to stop using the argument that ME causes harm, because harm in those terms really isn't our problem.

I do have evidence of harm: 11 of my hand joints are permanently fused by a weird mix* of psoriatic and erosive osteoarthritis. But the consequences of it are fairly minor (you adjust to it) and DMARDs have successfully prevented any further damaging flare-ups for the past seven years.

Worsening ME symptoms, on the other hand, led to loss of employment and of my home. That's what I need researchers, policymakers, and politicians to know about and act on.


* My GP said, 'Must be a rheumatology term' when he opened the consultant's report.

 

[Marky]

Exertion is not simply physical.

Never said it was. That`s why u need actometer AND questionnaires

 

[Barry]

There are also valid ways to measure (or at least assess) cognitive capabilities as I understand it. I know @Graham has been working on such a device, but I think reaction times are likely an indicator (relative ones anyway, between good times and bad), and I believe other methods have been touched upon here in S4ME before. I believe @Jonathan Edwards mentioned something a fair while back but I confess I cannot recall what it was.

 

[Ravn]

A harm is something, caused by an action or disease, that then itself causes subsequent worsening.

Demonstrating causation requires controlled conditions, and assessment free of bias.

So, hypothetically speaking, if somebody managed to identify and measure a signalling problem in ME (so not something that causes permanent damage to cells but something that impairs their function) AND if it could also be shown that aerobic exercise (or time spent in PEM more generally) further worsened the signalling problem, would that then qualify as harm?

 

[Jonathan Edwards]

I believe @Jonathan Edwards mentioned something a fair while back but I confess I cannot recall what it was.

Nor can I. Is this a measure of something?

 

[Jonathan Edwards]

So, hypothetically speaking, if somebody managed to identify and measure a signalling problem in ME (so not something that causes permanent damage to cells but something that impairs their function) AND if it could also be shown that aerobic exercise (or time spent in PEM more generally) further worsened the signalling problem, would that then qualify as harm?

Yes, I think that would do.
Bone marrow transplantation for leukaemia can cause as a byproduct autoimmune myasthenia - which is a signalling problem. That is a harm because it causes worsening of function in terms weakness.

 

[JemPD]

Thanks @Jonathan Edwards I think I'm beginning to see the complexity.

There are lots of situations like rheumatoid arthritis where exertion causes pain but in the long term maintains mobility so worsening of symptoms occurs in the context of benefit.

So patients saying ''X' makes me feel worse", actually can be seen as not counting for very much - because it's assumed that it's in the context of benefit?

So how on earth can one counter that then?

 

[Jonathan Edwards]

So how on earth can one counter that then?

With pointing out that there is no benefit - the PACE trial shows that.

 

[lansbergen]

Yes, I think that would do.
Bone marrow transplantation for leukaemia can cause as a byproduct autoimmune myasthenia - which is a signalling problem. That is a harm because it causes worsening of function in terms weakness.

Would something that helps within 10 minutes but only last as long as there is enough modulator present and improves symptoms in the long run, satisfy ?