What high-quality resources should S4ME produce for PwME, clinicians, researchers etc.?

[Midnattsol]

Like @Peter Trewhitt I can experience the more paradoxical aspects of PEM immediately, and I think I am then in "rolling PEM", or PEM has been growing and by chance came apparent when doing something or other. But who really knows? We need research.

 

[AliceLily]

I would make a distinction between my current symptoms worsening and the underlying condition worsening, though I find it hard to find the language to accurately describe this and on any particular day I am not always clear what is PEM and what is a worsening in the underlying condition as both are related to each other.

I see PEM as variation around an approximate level, though this is not a fixed base line, but one that can alter with the level of exertion and frequency of triggering PEM, but also that this approximate baseline can gradually or rapidly lower because of an ME relapse, a worsening in the underlying condition.

Yes, same here @Peter Trewhitt and @Midnattsol My experience as well.

I just hope we don't over-complicate with a lot of terms describing what is and isn't PEM. I think in milder to a mild-moderate ME it would be easier to determine fatigue, unusual exhaustion and a bout of PEM but as the ME gets to severer levels it is more full on. The gap between a baseline of constant awful symptoms, severe PEM and rolling PEM weighs more heavily on these than separate terms like fatiguability. etc. Someone please correct me if you think I am wrong about that.

I really do commend trying to get to the nitty gritty and hope we never stop trying to understand and define more. I just find it harder to separate other terms in my experience of severer ME.

 

[Trish]

Thanks, @AliceLily, I think rolling PEM and the blurred line between fatiguability and PEM is important to be included in descriptions of PEM.

 

[Jonathan Edwards]

I was thinking, preparing my talk on Thursday, that PEM is still not the ideal term for the signature feature of ME/CFS. It identifies the right ball park but it is easy to take it as meaning something that is not quite what matters. People are often puzzled by it or argue over it and the word malaise. I often think the simple term 'crash' is much easier for people to grasp, although that doesn't cover the whole PEM issue either.

 

[Sasha]

I was thinking, preparing my talk on Thursday, that PEM is still not the ideal term for the signature feature of ME/CFS. It identifies the right ball park but it is easy to take it as meaning something that is not quite what matters. People are often puzzled by it or argue over it and the word malaise. I often think the simple term 'crash' is much easier for people to grasp, although that doesn't cover the whole PEM issue either.

I agree that no one seems to know what 'malaise' means but I think 'crash' implies something severe and sudden, and PEM may be neither.

You don't like PESE (post-exertional symptom exacerbation)? I don't, because PEM for me can bring up new symptoms I don't normally have and has the key problem of limiting my energy even further than normal, and 'energy-limitation' doesn't quite seem to fit the term 'symptom' somehow.

 

[Jonathan Edwards]

PESE is too complicated.
Moreover, I don't think it is necessarily good to link this tightly to exertion. What I hear is that it is all very unpredictable. And ascribing worsening to exertion involves a causal inference. Human beings can be taken as reliable witnesses of symptoms but we are no way reliable witnesses to causal connections. We constantly mis-ascribe cause. We want the description of the illness to be free of inferences. Just how it is. That is the advantage of crash.

For me the central concept is something like brittleness - that the illness level can shift, apparently in response to minor stimuli. If new symptoms occur with worsening I would see that as simply a shift in level or spectrum, just as one might have new features with rheumatoid arthritis during a 'flare'. I don't think we should link PEM to any specific symptoms. I see it more as a shift of gear. All the symptoms are already taken as part of the illness picture.

 

[Kitty]

If new symptoms occur with worsening I would see that as simply a shift in level or spectrum, just as one might have new features with rheumatoid arthritis during a 'flare'.

In terms of general understandability and familiarity from other long term conditions, I'd say flare is better than crash.

The common meaning of crash is coming to an abrupt halt in an unplanned way. In the context of a long term condition, flare means being iller than usual. Some people in a flare will hit a wall, but others will get up and go to work; they might feel fifty shades of terrible, but they're functioning.

I think the concept of brittleness is really interesting.

 

[Trish]

I strongly dislike the term flare for PEM/crash. I can't quite explain why. Maybe because to me it implies a particular symptom such as pain increasing for a few days. To me it doesn't carry the implications of being brought to a standstill like crash does. I'm not sure I like either term flare or crash much, because they are metaphors derived from other contexts.

Maybe post exertional deterioration would be better.

I also dislike conflation of exertion with other triggers of PEM. I think there is plenty of evidence that PEM is triggered by exertion. It's true that other stimuli such as sensory stimuli, infections, and poor sleep can trigger immediate deterioration. I don't know whether they can have the delayed effect.

 

[Sasha]

Moreover, I don't think it is necessarily good to link this tightly to exertion. What I hear is that it is all very unpredictable. And ascribing worsening to exertion involves a causal inference. Human beings can be taken as reliable witnesses of symptoms but we are no way reliable witnesses to causal connections. We constantly mis-ascribe cause.

Doesn't the unpredictability issue simply mean that our condition varies spontaneously in severity but that we can also make it worse by over-exertion? I take your point about people being bad at ascribing cause but if overdoing it is followed the next day by far worse symptoms a thousand times, isn't it reasonable to attribute cause? Or do you think that people might do more one day because they feel better but that would naturally have been followed by a severe worsening of symptoms anyway?

We want the description of the illness to be free of inferences. Just how it is. That is the advantage of crash.

But aren't we still talking about a 'post-exertional crash' rather than just a crash?

If we throw out the idea that over-exertion makes symptoms worse, I think we're in real trouble.

 

[Kiristar]

The key thing I've yet to find a really good but very concise paper on is a robust well argued and referenced summary of is the body evidence supporting why we can be confident it isn't psychological and is a physical disease along with the latest findings.

Very happy to be directed to something if it exists.

 

[Kitty]

To me it doesn't carry the implications of being brought to a standstill like crash does.

Yeah, I get that.

it does have that meaning to me because I have psoriatic arthritis as well.

It's not just having a bit more pain—as in conditions like MS or inflammatory bowel disease, it has as every bit as much potential to floor you as PEM. The fatigue's worse than in moderate ME/CFS because it never relents for months on end, and the pain is a different order of magnitude.

And that's the catch, I think. PEM makes me feel like death dug up, but I'm not in bed. If I really had no food in the house, I could drive to the little supermarket a mile away. The difference is the underlying severity of the ME/CFS.

 

[Jonathan Edwards]

In terms of general understandability and familiarity from other long term conditions, I'd say flare is better than crash.

I don't think flare works for ME/CFS because it implies a spontaneous 'lighting up' of some process. And as others have said it doesn't have the sort of stopping in tracks sense of PEM. It doesn't even necessarily imply a change in symptoms.

I understand the desire to keep the link to exertion but I am not absolutely clear why we would be 'in real trouble without it. It tends to provide fodder for those who see people with ME/CFS as lazy, having a 'negative effort preference'. It is something health professionals have an excuse to be sceptical about.

My thought is that there is a need both to avoid inference of cause and to avoid denying apparent cause. There is a very consistent story that worsening occurs after exertion but there is also a sense in which this is tripping something that can also have a mind of its own (or a cytokine of its own maybe).

My sense is that if the aim is persuade medical professionals not necessarily directly involved in ME/CFS (which tends to mean they are out causes) that the syndrome has a very particular history pattern that can be described without necessarily referring to causation but which often seems to reflect exertion and which at present does not make sense in terms of any understood regulatory pathways. I have met people who crash and they are in bed so they must be crashed. I cannot deny that. It is as much as anything a way of getting the medical community to see that the problem is not just talk.

 

[Kitty]

I've yet to find a really good but very concise paper on is a robust well argued and referenced summary of is the body evidence supporting why we can be confident it isn't psychological and is a physical disease along with the latest findings.

We can't really show that. Whilst there's no evidence ME/CFS is psychological in origin, we can't produce convincing evidence that it isn't—and if we try to claim we know things we don't, we're no better than the psych lobby. All we can show is that biopsychosocial interventions don't work. We do at least have decent evidence for that!

 

[Jonathan Edwards]

The key thing I've yet to find a really good but very concise paper on is a robust well argued and referenced summary of is the body evidence supporting why we can be confident it isn't psychological and is a physical disease along with the latest findings.

There isn't one because, unfortunately, we don't have that body of evidence.

 

[Trish]

And that's the catch, I think. PEM makes me feel like death dug up, but I'm not in bed. If I really had no food in the house, I could drive to the little supermarket a mile away. The difference is the underlying severity of the ME/CFS.

I think a fact sheet about PEM needs a way to capture the full range of people's experiences of PEM in ME/CFS, and not assume one sort of disease always produces worse flare ups than another.

 

[Kitty]

My sense is that if the aim is persuade medical professionals not necessarily directly involved in ME/CFS (which tends to mean they are out causes) that the syndrome has a very particular history pattern that can be described without necessarily referring to causation but which often seems to reflect exertion and which at present does not make sense in terms of any understood regulatory pathways.

So we tell it as a story? A sort of witness account, where the judge will stop you if you try offer explanations or motivations, because you're only allowed to describe what you saw?

I've got to disappear now, but that's an interesting way of coming at it.

 

[Midnattsol]

And that's the catch, I think. PEM makes me feel like death dug up, but I'm not in bed. If I really had no food in the house, I could drive to the little supermarket a mile away. The difference is the underlying severity of the ME/CFS.

I'm generally mild. With PEM, I have been unable to get to the store two minutes of walking from the apartment we were currently living in. I might not be in bed when like that, but I am not necessarily able to walk very far without support, and even with support my body can just quit on me.

I got to test this once when not feeling too bad, but in what I would call "rolling PEM". I took a walk as the weather was nice and sunny, shuffling along very slowly with my speed getting progressively slower. Eventually I had to sit down, and sat for an hour before being able to get up and slowly shuffle back home.

I don't always get this type of PEM, but it is among the most debilitating places I can be. Luckily for me I often will feel fine if I just sit still and do little that day, only feeling terrible if I move, but at times it also comes with nausea and generally feeling terrible regardless of what I do or don't do.

 

[Jonathan Edwards]

So we tell it as a story? A sort of witness account, where the judge will stop you if you try offer explanations or motivations, because you're only allowed to describe what you saw?

Absolutely. This is a serious matter of evidence, just as in court. As a diagnostician I have to be sure that what I hear is just the facts. The facts may include a sequence of events but not a causal attribution. Being trained in medicine is as much as anything being trained in just how unreliable we are at judging causation, whether as patients or as professionals and scientists. We though the sun went round the earth. We think the bright dots on the announcement board at Euston Station move in a stream leftwards when in fact nothing moves. It is just different ones going on and off. We think a pain is caused by a knee when it cause by a hip.

So the job is indeed to collect a 'history' as it is called. And it is essential that it is in the person's own words, not preconceived sound bites.

We just had a roofer round to quote on a new roof. He was not interested in what we thought was causing the damp stain on the wall. He wanted the facts. Same for doctors.

 

[Kitty]

I might not be in bed when like that, but I am not necessarily able to walk very far without support

Sorry, that might have been a bit misleading! I couldn't walk round the shop on my best day, I'd use the powered wheelie.

The point is that some people are in bed, and I'm not. I really don't want to go out, but I could if there was enough need to justify prolonging the symptoms.

 

[Sasha]

I understand the desire to keep the link to exertion but I am not absolutely clear why we would be 'in real trouble without it.

Because isn't this worsening of symptoms following exertion the key symptom that distinguishes ME/CFS from other things? If we don't have PEM, aren't we just a bunch of tired, poorly people?

It tends to provide fodder for those who see people with ME/CFS as lazy, having a 'negative effort preference'. It is something health professionals have an excuse to be sceptical about.

But surely that doesn't mean that we have to pretend that we don't have this symptom?

My thought is that there is a need both to avoid inference of cause and to avoid denying apparent cause. There is a very consistent story that worsening occurs after exertion but there is also a sense in which this is tripping something that can also have a mind of its own (or a cytokine of its own maybe).

Do you mean that you want to avoid saying that exertion causes the worsening of symptoms but rather say that it trips some biochemical process? So you'd prefer a term along the lines of 'post-exertion cytokine disorder' or something? But isn't our big problem that we don't know what that process is and so can't name it in that way?

My sense is that if the aim is persuade medical professionals not necessarily directly involved in ME/CFS (which tends to mean they are out causes) that the syndrome has a very particular history pattern that can be described without necessarily referring to causation but which often seems to reflect exertion and which at present does not make sense in terms of any understood regulatory pathways. I have met people who crash and they are in bed so they must be crashed. I cannot deny that. It is as much as anything a way of getting the medical community to see that the problem is not just talk.

I agree that it would be good to have a term that doesn't encourage the medical community to decide that this is all in our heads but it seems to take remarkably little (or indeed nothing) for them to think that. If clearly describing the symptom requires us to say that it follows exertion, I don't see how we can get away from something like PEM when we don't yet have a mechanism.