Addressing The Diagnostic Void Faced By Patients With Deteriorative Symptoms

Jesse said:
So I've always understood that overexertion can lead to permanent detoriation in every ME/CFS patient.
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The problem for the medical profession is that we have no factual proof of this - for anyone. We can document symptoms and signs but saying what caused what is a different thing. It normally takes years of research to prove what causes what. We are all very unreliable about judging waht causes what so it has to be verified.

I think this is the basic problem with any classification based on such a concept.
 
Jonathan Edwards said:
The problem for the medical profession is that we have no factual proof of this - for anyone. We can document symptoms and signs but saying what caused what is a different thing. It normally takes years of research to prove what causes what. We are all very unreliable about judging waht causes what so it has to be verified.

I think this is the basic problem with any classification based on such a concept.
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My point was more so that it does not seem uncommon for patients to experience permanent detoriation following overexertion/PEM. Whether's it's causative we don't know but I've heard many patients attribute it to overexertion.

If that's the case then I don't see why it should not be included in patient information about PEM?
 
Jesse said:
My point was more so that it does not seem uncommon for patients to experience permanent detoriation following overexertion/PEM. Whether's it's causative we don't know but I've heard many patients attribute it to overexertion.
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But if someone has a disease that involves permanent deterioration anyway - like MS or RA - then it will always follow overexertion because they will overexert themselves at some point or other and they will deteriorate.

So unless we think there is a causative link there is no justification for including a suggested link in patient information. It would be a very bad idea to tell people with MS or RA to be careful about exerting themselves and keeping moving.

The reason for including the suggestion in patient literature is that for ME/CFS we do suspect a causal link. But it needs to be made clear that we know very little about whether it really is.
 
Jonathan Edwards said:
The reason for including the suggestion in patient literature is that for ME/CFS we do suspect a causal link. But it needs to be made clear that we know very little about whether it really is.
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Sure but that seems to be true for most things on ME/CFS right?

The specific issue here though seems to be that current patient information generally does not include any information about permanent detoriation after overexertion / PEM. Even though that experience doesn't seem uncommon at all. I think adding such information would validate those patients's experience, and potentially serve as a warning to new patients (although I can see your point about wanting more definite data on causation for that).
 
Jesse said:
Sure but that seems to be true for most things on ME/CFS right?
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No. Other features of ME/CFS, like symptoms, are reports experience. The sense that permanent deterioration was due to overexertion is an interpretation. How can one know it is? Even if there is a regular relation betwen exertion and symptom worsening there is absolutely no way of knowing that permanent worsening is causally linked to any particular episode of exertion, surely? How would one tell?
Jesse said:
I think adding such information would validate those patients's experience,
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And so I think there is a crucial distinction here. This is not a matter of 'patients' experience'. It is a matter of interpretation, and one with very uncertain evidence base.

If we consider this sort of interpretation 'valid' then we have to consider the claim that someone was miraculously cured by the Lightning Process valid. We need a level playing field.

I am not arguing against warning people about potential permanent deterioration but I think 'validating experience' is a dangerous red herring in this situation.
 
There is a lot of anecdotal evidence of long term worsening following GET from large patient surveys. I think it is reasonable to attribute the worsening in at least some cases to the increased activity because the same surveys show much lower levels of worsening for pacing and for other 'treatments'.

I think that's sufficient to say at least that many pwME report long term deterioration of their ME/CFS severity following graded exercise therapy and similar exercise programs.

My problem is with the claim of permanence. None of us know what our future holds.
 
Jonathan Edwards said:
Even if there is a regular relation betwen exertion and symptom worsening there is absolutely no way of knowing that permanent worsening is causally linked to any particular episode of exertion, surely? How would one tell?
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So in my experience I've had a few times where I overexerted way too much which always results in 1-2 weeks of severe PEM and after that I just feel worse and can do less and never get back to my old baseline. Maybe you can argue that I never got out of PEM in the first place.. I don't know.

But your point is taken!
 
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I’ve had periods where I exercised (bad advice from physios) and got PEM every time, but still had improvements in my overall baseline for over a year. During the same timeframe I also had larger crashes that set me back for months. Eventually I stopped having any improvements but the crashes didn’t stop so my overall health deteriorated to the point of being bedridden.

My interpretation is that the exercise and lack of pacing (didn’t know about it at that point) made me worse. But I can’t prove it.
 
Jonathan Edwards said:
No. Other features of ME/CFS, like symptoms, are reports experience. The sense that permanent deterioration was due to overexertion is an interpretation. How can one know it is? Even if there is a regular relation betwen exertion and symptom worsening there is absolutely no way of knowing that permanent worsening is causally linked to any particular episode of exertion, surely? How would one tell?
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On an individual level, I think that if we're normally stable for years and then exert ourselves well beyond the normal and have that immediately followed by long-term worsening, it's hard to ignore the strong possibility of causation. But you're right that such anecdotes don't have the power of a proper empirical study. And yet an empirical study of this would be unethical. How could causation then every be proven, in principle?
 
I think the only ethical way to study this is to do a longitudinal study over several years with people at all severity levels, tracking their activity objectively with wearables and symptoms and severity, and seeing whether upticks in activity are followed by prolonged downturns.
 
Trish said:
There is a lot of anecdotal evidence of long term worsening following GET from large patient surveys. I think it is reasonable to attribute the worsening in at least some cases to the increased activity because the same surveys show much lower levels of worsening for pacing
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But isn't that circular?
If you have been doing pacing then there are no 'overexertion' events to attribute deterioration to. You wouldn't say 'oh yes I got a lot worse after that week of doing the same as usual'.

If you get worse you look for an event to blame it on.

I do, nevertheless, think it very likely that GET will make people worse, just as an extension to the PEM effect. As you say, it is the permanent bit that is very hard to judge.
 
Sasha said:
How could causation then every be proven, in principle?
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We rarely ever prove anything for certain when it comes to disease processes. But if we identify pathways that can be reversed by treatments and with enough specificity we may one day understand how it all fits together. That is more or less the situation for RA. We never proved what was going on. We just proved that if you block a number of pathways that you think are going on the symptoms go away.

I suspect that long term studies to establish causation would be very hard to do and inconclusive but I still think, like Trish, that extended wearable actometer studies could at least give us some more objective evidence of the long term dynamics that might help.
 
Jonathan Edwards said:
I suspect that long term studies to establish causation would be very hard to do and inconclusive but I still think, like Trish, that extended wearable actometer studies could at least give us some more objective evidence of the long term dynamics that might help.
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Is it weird that extendable wearable actometer studies haven't been done? If people had believed that PwME was organic, would such a study have been done by now?

Are any in the pipeline, and if not, I wonder if we could push for one. It could all be done at home. Maybe DecodeME participants could be invited to take part.
 
Sasha said:
Is it weird that extendable wearable actometer studies haven't been done?
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It doesn't surprise me. It would be a lot of hard work over a period of years. You would need a cohort of clinic patients to study over time and there aren't any clinics that do that much. Those that there are tend to be based on BACME style approaches with BACME style staff and they wouldn't understand the point of the study.
 
Jonathan Edwards said:
It doesn't surprise me. It would be a lot of hard work over a period of years. You would need a cohort of clinic patients to study over time and there aren't any clinics that do that much. Those that there are tend to be based on BACME style approaches with BACME style staff and they wouldn't understand the point of the study.
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Why would we need clinic patients when we could have DecodeME patients? They would already presumably be more clearly defined as cases for research purposes than the patients in the NHS clinics.
 
Jonathan Edwards said:
We could now, yes. And it would be good to study a cohort recruited for a reason not related to the study aims (to avoid bias). I was referring to the past.
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I wonder what else useful could be done with members of the DecodeME cohort in terms of remote studies that wouldn't have been possible previously. I forget how many tens of thousands signed up at the beginning but there are probably a few hundred DecodeME PwME in every major city (which is where the universities and big hospitals are where the researchers hang out), so DecodeME would be a good source for in-person studies too. We can forget BACME and the NHS clinics!
 
Jesse said:
Is that not generally accepted to be a core feature of ME/CFS and PEM?
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Your average GP / Specialist / Psychiatrist will think you're delusional for saying exercise causes you permanent damage. I was locked up in a mental hospital for it. Even if there are a few doctors who believe in damage, the probability of finding one is low.

There is a huge gap between what ME patients upon forums think ME is, and what doctors think ME is. That's why I think we need a new diagnosis.
 
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