Addressing The Diagnostic Void Faced By Patients With Deteriorative Symptoms

[bobbler]

So I've always understood that overexertion can lead to permanent detoriation in every ME/CFS patient. People often return to their baseline after PEM but that's not guaranteed. Plenty of people have become severe because they kept overdoing it when they were mild.

Is that not generally accepted to be a core feature of ME/CFS and PEM?

@DigitalDrifter is that different from what you mean?

As for myself significant PEM does often lead to permanent detoration. I've been sick for 15 years moving from mild to severe.

It’s the bit that is most disbelieved to the point it’s ignored when someone says it here in the uk.

People assume when we say our limits or no that it’s ok to do what they do to us anyway and tell us that’s bs (or not, they just think it so obviously it shows) ‘because they aren’t going to change their behaviour’ and then when we get I’ll assume we’ll be fine later and when we aren’t they act as if it’s because we acted unhealthily.

Of course the other favourite and key bit is having enough rest to recover from each PEM - they don’t believe that either and think it’s something to be negotiated to give us a tenth of recovery time because for no actual reason just their assumption cutting it short will make us fitter. That’s how im this ill. And the iller you get the more cringingly low your threshold is so that more people can laugh at it being untrue and break it by miles ‘because who needs weeks to recover from a phone call’ or ‘you had your x hours in bed, I only interrupted it for a bit in the middle, what’s the issue’

@DigitalDrifter is right. When their eg get breaks someone’s body instead of saying sorry and writing it down as an outcome then that broken body is taken as misbehaviour or lies (they bridge it with some nonsense about how ‘delusion’ ie the mind ‘broke the body’ and not them ) so you get a double-down due to these really errant beliefs that become more fervent the more harmed someone gets, including if a new person gets to come in and ‘have their try at them’

I think the scary thing is that the mental health label has resulted in the stats being hidden of the outcomes of this attitude (that they call treatment as if it’s medical but is treatment in laypersons terms) - even when people die getting attribution to ‘mistreated ME’ rather than something else is very unlikely even now

 

[murtoz]

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?

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.

So the fact that 67% of pwME say they have experienced a PEM crash they never recovered from counts for nothing?

Jonathan you are doing patients a great disservice here. It shouldn't matter that science doesn't know why, if two thirds of patients say they have this experience it is extremely valid.

Source: table 6 in https://www.mdpi.com/2075-4418/9/1/26. n=1534

 

[bobbler]

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.

JUst read this: https://www.kingsfund.org.uk/insight-and-analysis/blogs/cancer-dementia-social-care-system-unfair

and it isn't the only thing PEM puts the cat among the pigeons for, but it has made me think about how some people might be having to think (and what something is termed as comes under different budgets etc).

 

[Jonathan Edwards]

So the fact that 67% of pwME say they have experienced a PEM crash they never recovered from counts for nothing?

Jonathan you are doing patients a great disservice here. It shouldn't matter that science doesn't know why, if two thirds of patients say they have this experience it is extremely valid.

It does not count for nothing but attributing the permanence of the worsening to the exertional trigger is not an experience but an interpretation.

The reason why this matters to science and, more importantly, matters to patients, is that if the interpretation is misleading, not even completely wrong but just misleading because it is oversimplified, then the scientists trying to understand and find a cure may be unable to make sense of what is going on and forever follow blind alleys.

There is a very real issue here. If I were to take at face value the idea that a single brief episode of exertion can produce a deterioration from which there is no recovery, yet in the absence of any measurable changes in biology that might explain that, then it is extremely hard to think of an immunological explanation. I can just about do it but it has required producing a theory that I am told many researchers reject as highly implausible. (I think their theories are even more implausible, so we are stuck.)

If I reject an immunological explanation, and I can see no plausible 'metabolic trap' type solution that would explain permanent change after an episode of exertion I thrown back on to a psychological explanation. The patients just think they cannot get better. I do not believe that but it is what a scientist is very nearly forced to do if we oversimplify the interpretation of events. Permanent worsening after an episode of exertion sounds for all the world like a problem all in the mind.

The answer may be that the problem is somewhere in the central nervous system that is not the mind but which everyone has lumped in with the mind. But I am still sceptical. I think there must be an immunological error driving the problem in at least some cases. And that would be a much better hope for treatment.

And there is a difficulty with the story of an episode of PEM leading to permanent change. Part of what I hear from patients is that the exertion may be something that would to a normal person seem trivial. So it seems that you could blame lifting a teaspoon for your permanent worsening. Maybe that is the reality, but we are left with something that is not in itself an experience but a way of explaining experience that may not be entirely reliable.

To put it simply, if we take this interpretation at face value then pretty much every researcher's explanation for ME/CFS is pretty laughable so it is not surprising that the BPS people laugh at them. So it is crucially important that we challenge the interpretation to see if it is oversimplified. And in doing so we may come to realise that there are plausible models for it, but very subtle ones.

Of course it matters whether science can know why. The whole point of the forum is to help science find an answer through finding out why.

 

[Utsikt]

To put it very simply: There is no reason to doubt the timeline presented by patient. But correlation doesn’t imply causation.

And many patients are being taught by other patients that doing too much can make you worse. So it’s natural that they attribute their worsening to doing too much.

This is the same issue as with any mind-body intervention where you’re being taught what is going to happen so you attribute what happened to what you did at the time.

 

[Jesse]

It does not count for nothing but attributing the permanence of the worsening to the exertional trigger is not an experience but an interpretation.

The reason why this matters to science and, more importantly, matters to patients, is that if the interpretation is misleading, not even completely wrong but just misleading because it is oversimplified, then the scientists trying to understand and find a cure may be unable to make sense of what is going on and forever follow blind alleys.

There is a very real issue here. If I were to take at face value the idea that a single brief episode of exertion can produce a deterioration from which there is no recovery, yet in the absence of any measurable changes in biology that might explain that, then it is extremely hard to think of an immunological explanation. I can just about do it but it has required producing a theory that I am told many researchers reject as highly implausible. (I think their theories are even more implausible, so we are stuck.)

If I reject an immunological explanation, and I can see no plausible 'metabolic trap' type solution that would explain permanent change after an episode of exertion I thrown back on to a psychological explanation. The patients just think they cannot get better. I do not believe that but it is what a scientist is very nearly forced to do if we oversimplify the interpretation of events. Permanent worsening after an episode of exertion sounds for all the world like a problem all in the mind.

The answer may be that the problem is somewhere in the central nervous system that is not the mind but which everyone has lumped in with the mind. But I am still sceptical. I think there must be an immunological error driving the problem in at least some cases. And that would be a much better hope for treatment.

And there is a difficulty with the story of an episode of PEM leading to permanent change. Part of what I hear from patients is that the exertion may be something that would to a normal person seem trivial. So it seems that you could blame lifting a teaspoon for your permanent worsening. Maybe that is the reality, but we are left with something that is not in itself an experience but a way of explaining experience that may not be entirely reliable.

To put it simply, if we take this interpretation at face value then pretty much every researcher's explanation for ME/CFS is pretty laughable so it is not surprising that the BPS people laugh at them. So it is crucially important that we challenge the interpretation to see if it is oversimplified. And in doing so we may come to realise that there are plausible models for it, but very subtle ones.

Of course it matters whether science can know why. The whole point of the forum is to help science find an answer through finding out why.

Very interesting! Some (pretty random) thoughts:

Would another way to look at it be that the PEM process doesn't fully resolve sometimes? If people report experiencing PEM for weeks to months maybe it could be prolonged PEM which people experience as a lower baseline?

Could deconditioning also play a role? People reduce activity due to (longlasting) PEM then struggle to get back where they were. I know people don't generally like this thinking and many report opposite experiences (being able to easily increase activity after PEM subsides, even after months). But for me it does feel like that sometimes. Basically my baseline are the activities that my body is adapted to and can comfortably do. If I do more I get PEM. If I do less for a long time my body loses its ability to do those things comfortably, thus causing PEM when I try to reintroduce them.

So with longlasting PEM I seldom get back at my prior level. Same with a heavy flu. Everytime I get knocked out with a flu (or similar) for 2-4 weeks I struggle to get back to my prior baseline. It feels like my biggest problem is that I can't recondition. The basis of reconditioning is (progressive) overload. But obviously any overload leads straight to PEM.

Maybe I'm alone in this experience or it's an incorrect interpretation.

 

[Utsikt]

Very interesting! Some (pretty random) thoughts:

Would another way to look at it be that the PEM process doesn't fully resolve sometimes? If people report experiencing PEM for weeks to months maybe it could be prolonged PEM which people experience as a lower baseline?

Could deconditioning also play a role? People reduce activity due to (longlasting) PEM then struggle to get back where they were. I know people don't generally like this thinking and many report opposite experiences (being able to easily increase activity after PEM subsides, even after months). But for me it does feel like that sometimes. Basically my baseline are the activities that my body is adapted to and can comfortably do. If I do more I get PEM. If I do less for a long time my body loses its ability to do those things comfortably, thus causing PEM when I try to reintroduce them.

So with longlasting PEM I seldom get back at my prior level. Same with a heavy flu. Everytime I get knocked out with a flu (or similar) for 2-4 weeks I struggle to get back to my prior baseline. It feels like my biggest problem is that I can't recondition. The basis of reconditioning is (progressive) overload. But obviously any overload leads straight to PEM.

Maybe I'm alone in this experience.

I have become weaker after a year as bedridden. But I’ve been able to do more the last six months compared to the first six months when I was in PEM most of the time. So it doesn’t feel like my muscles are the bottleneck, there’s something else holding me back.That something else might be affected by the total capacity of my muscles, though, but that’s difficult to know.

 

[Trish]

And there is a difficulty with the story of an episode of PEM leading to permanent change. Part of what I hear from patients is that the exertion may be something that would to a normal person seem trivial. So it seems that you could blame lifting a teaspoon for your permanent worsening. Maybe that is the reality, but we are left with something that is not in itself an experience but a way of explaining experience that may not be entirely reliable.

I doubt many are reporting that a single very minor episode led to long term detrioration. Much more often in the cases I've read deterioration that the pwME doesn't recover from occurs after repeated exertion and crashes over weeks or months, with each time their threshold for triggering PEM getting lower. So for example, doing GET that gradually builds up over weeks or months in addition to their usual daily activity.

The people in the Hanson 2day CPET study with ME/CFS took an average of about 9 or 10 days to return to pre challenge level of symptoms, compared to the control healthy people who took 1 or 2 days. Only one of the 80 or so reported still not being back to previous level after a year, and in that case it would be impossible to know what activity level they did over that year, so impossible to attribute the long term deterioration to that one event.

I suspect if the same people tried to do a 2 day CPET every week, in addition to their normal activities, so not giving their bodies time to recover between challlenges, they might end up with long term deterioration. But we can't test that because it would be unethical to try to push people into long term deterioration.

So we are left with needing longitudinal studies of activity and symptoms.

 

[Jonathan Edwards]

I doubt many are reporting that a single very minor episode led to long term detrioration. Much more often in the cases I've read deterioration that the pwME doesn't recover from occurs after repeated exertion and crashes over weeks or months, with each time their threshold for triggering PEM getting lower. So for example, doing GET that gradually builds up over weeks or months in addition to their usual daily activity.

That sounds plausible but it makes the scientific modelling problem even murkier.

 

[Jesse]

I have become weaker after a year as bedridden. But I’ve been able to do more the last six months compared to the first six months when I was in PEM most of the time. So it doesn’t feel like my muscles are the bottleneck, there’s something else holding me back.That something else might be affected by the total capacity of my muscles, though, but that’s difficult to know.

Yeah so the only time I have noticed an improvement is when I get out of rolling PEM and paced better. But that kind of makes sense.

I guess I'm trying to figure out if one's PEM threshold is purely absolute (a function of one's severity) or whether there's also a relative component (based on one's phsyical fitness).

Would a mild person always be able to get back to their previous level of functioning after taking strict rest?

 

[Utsikt]

Yeah so the only time I have noticed an improvement is when I get out of rolling PEM and paced better. But that kind of makes sense.

I guess I'm trying to figure out if one's PEM threshold is purely absolute (a function of one's severity) or whether there's also a relative component (based on one's phsyical fitness).

Would a mild person always be able to get back to their previous level of functioning after taking strict rest?

I would love to know the answer to that!

 

[Casterofspells]

It does not count for nothing but attributing the permanence of the worsening to the exertional trigger is not an experience but an interpretation.

The reason why this matters to science and, more importantly, matters to patients, is that if the interpretation is misleading, not even completely wrong but just misleading because it is oversimplified, then the scientists trying to understand and find a cure may be unable to make sense of what is going on and forever follow blind alleys.

There is a very real issue here. If I were to take at face value the idea that a single brief episode of exertion can produce a deterioration from which there is no recovery, yet in the absence of any measurable changes in biology that might explain that, then it is extremely hard to think of an immunological explanation. I can just about do it but it has required producing a theory that I am told many researchers reject as highly implausible. (I think their theories are even more implausible, so we are stuck.)

If I reject an immunological explanation, and I can see no plausible 'metabolic trap' type solution that would explain permanent change after an episode of exertion I thrown back on to a psychological explanation. The patients just think they cannot get better. I do not believe that but it is what a scientist is very nearly forced to do if we oversimplify the interpretation of events. Permanent worsening after an episode of exertion sounds for all the world like a problem all in the mind.

The answer may be that the problem is somewhere in the central nervous system that is not the mind but which everyone has lumped in with the mind. But I am still sceptical. I think there must be an immunological error driving the problem in at least some cases. And that would be a much better hope for treatment.

And there is a difficulty with the story of an episode of PEM leading to permanent change. Part of what I hear from patients is that the exertion may be something that would to a normal person seem trivial. So it seems that you could blame lifting a teaspoon for your permanent worsening. Maybe that is the reality, but we are left with something that is not in itself an experience but a way of explaining experience that may not be entirely reliable.

To put it simply, if we take this interpretation at face value then pretty much every researcher's explanation for ME/CFS is pretty laughable so it is not surprising that the BPS people laugh at them. So it is crucially important that we challenge the interpretation to see if it is oversimplified. And in doing so we may come to realise that there are plausible models for it, but very subtle ones.

Of course it matters whether science can know why. The whole point of the forum is to help science find an answer through finding out why.

There are consistent theories like that of Wirth that explain PEM. Wüsts biopsy findings meanwhile are inconsistent with the deconditioning hypothesis. All failed GET and CBT trials are evidence this isn’t the case too. Sorry but this is really an outdated idea.

 

[rvallee]

The reason why this matters to science and, more importantly, matters to patients, is that if the interpretation is misleading, not even completely wrong but just misleading because it is oversimplified, then the scientists trying to understand and find a cure may be unable to make sense of what is going on and forever follow blind alleys.

I gotta say that there is something funny about arguing this when we look at how the medical profession is handling chronic illness and absolutely nothing of what you claim is happening. Or it's happening only when it comes to being skeptical about its existence and anything that proves it. On one side is demands for the highest standards of the most rigorous research, a level that only a small minority of the research out there achieves, on the other is the PACE gang and people like Paul Garner, who can basically fart in a general direction and get awarded for it. It's basically a pile of cocaine vs celery sticks. Some people choose the celery, but we're dealing with severe addicts here.

For sure that skepticism should always apply, but none of this is getting anywhere. Even the idea of having years-long rigorous studies is laughable, not only will it never happen, I would never trust anyone to do such a study. It would be completely botched, so that many years later we would still be in the exact same spot. Even as we see from patient organizations, I wouldn't trust any of them to get it right. It's always possible to corrupt them, there is too much pressure against us.

Of course there is significant deterioration following exertion, in some cases permanent in the sense that it remained until the person affected died, and of course medicine completely lacks the skills and know-how to determine that. Not that it can't be assessed, it's an entirely human problem where culture and ideology essentially overwhelm any possibility of making this happen.

I'm currently more hopeless than I've ever been about this. I see nothing good happening. This profession is a disaster most of the time. Maybe DecodeME will mark a turning point, but we're still facing the same problem where a profession that wants nothing to do with solving this problem would have to do some real work about it, and I just don't see that happening.

Nothing's changed from my assessment of years ago, where the only realistic way out is AI completely transforming medicine, beyond recognition from its current sorry state, and pretty much our entire civilization. It's like the problem of democracy: some straight up don't want it. It doesn't matter that it works better, there are people who will do everything to break it, and since it's so much easier to break things, the barbarians always win in the end. Humans are the problem here. Human nature, human beliefs and culture, myths, superstitions, all tied together by all the known logical fallacies, and probably some unknown ones as well.

 

[Jonathan Edwards]

I gotta say that there is something funny about arguing this when we look at how the medical profession is handling chronic illness and absolutely nothing of what you claim is happening.

I am talking about doing some real science, not the way the medical profession is handling the problem!

 

[Jonathan Edwards]

There are consistent theories like that of Wirth that explain PEM. Wüsts biopsy findings meanwhile are inconsistent with the deconditioning hypothesis. All failed GET and CBT trials are evidence this isn’t the case too. Sorry but this is really an outdated idea.

I am not familiar with a theory of Wirth. The discussion here over the years suggests that most of us find PEM hard to explain. Can you elaborate?

Wust's biopsy findings are a bit hard to interpret. The claim of necrosis doesn't fit with all the historical data on normal CK etc. The 'amyloid' may have been a red herring. Again, I am not sure what this solves. Why would it explain permanent worseningwhen there is no evidence for progressive muscle damage?

I agree that we are not dealing with deconditioning but that wasn't raised, was it?

In what way is 'this' (whichever that was) an outdated idea?

Fill me in a bit because I am here to listen to everything everyone wants to say.

 

[Jonathan Edwards]

Checking Google I see you are probably referring to Wirth and Scheibenbogen's ideas on autoantibodies and endothelium. I don't think that holds up because the levels of antibodies are barely different from normals and we have no evidence of endothelial change being a source of PEM symptoms that I can see. And again, the key point is that there is nothing in this theory that would explain permanent worsening from episodes of exertion.

 

[Jesse]

I agree that we are not dealing with deconditioning but that wasn't raised, was it?

I raised it earlier today:

Very interesting! Some (pretty random) thoughts:

Would another way to look at it be that the PEM process doesn't fully resolve sometimes? If people report experiencing PEM for weeks to months maybe it could be prolonged PEM which people experience as a lower baseline?

Could deconditioning also play a role? People reduce activity due to (longlasting) PEM then struggle to get back where they were. I know people don't generally like this thinking and many report opposite experiences (being able to easily increase activity after PEM subsides, even after months). But for me it does feel like that sometimes. Basically my baseline are the activities that my body is adapted to and can comfortably do. If I do more I get PEM. If I do less for a long time my body loses its ability to do those things comfortably, thus causing PEM when I try to reintroduce them.

So with longlasting PEM I seldom get back at my prior level. Same with a heavy flu. Everytime I get knocked out with a flu (or similar) for 2-4 weeks I struggle to get back to my prior baseline. It feels like my biggest problem is that I can't recondition. The basis of reconditioning is (progressive) overload. But obviously any overload leads straight to PEM.

Maybe I'm alone in this experience or it's an incorrect interpretation.

Yeah so the only time I have noticed an improvement is when I get out of rolling PEM and paced better. But that kind of makes sense.

I guess I'm trying to figure out if one's PEM threshold is purely absolute (a function of one's severity) or whether there's also a relative component (based on one's phsyical fitness).

Would a mild person always be able to get back to their previous level of functioning after taking strict rest?

It obviously isn't part of the core pathophysiology. I was just musing about whether it could have some relevance in (permanent) detoriation and one's severity in general.

 

[wigglethemouse]

Interesting discussion.

While I have permanently worsened from (1) pushing too hard I have also worsened for what seems like (2) no reason at all, and also from a (3) TDAP vaccine. I also have (4) seasonal variation. Because (1) is discussed a lot it seems like the other reasons are not talked about as often.

I wish we knew more about other diseases like MS that have variation, but also a progressive subgroup. Why are some progressive and others not.

 

[Jonathan Edwards]

I raised it earlier today:

Ah,OK. I thought that the comment was in response to my post that was pasted in.

 

[Jesse]

Ah,OK. I thought that the comment was in response to my post that was pasted in.

It was.. so I'm also not sure what they meant in relation to your comment.