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

there was also PENE
List of symptoms in ME CFS/ICC/PENE - MEpedia

 

This also includes confusing 'crash' with 'relapse' that pwME describe. They are not interchangeable in my own experience.

I like the term PEAS, post exertional amplification of symptoms, but that's just me because I don't get worsening over time after delayed PEM. I recover back to baseline.

 

No, I don't actually think it is. The difference is much broader and can be appreciated without reference to worsening following exertion. There are the symptoms like being unable to tolerate light and orthostatic intolerance. And there are the ups and downs and crashes that have no explanation in terms of markers like CRP. PEM for me is a manifestation of a much more general illness dynamic pattern that needs a separate explanation.

It isn't a symptom. It is a time course of symptoms. But either way there is no need to pretend it isn't there. It is important for patients to describe it as part of the story. But it is not likely to persuade more medical professions to take ME/CFS seriously.

No, that wasn't the point.

As I say, I am not sure that it does. I was persuaded of the reality of ME/CFS principally by hearing a first hand story socially from someone whose progress through life I was used to being updated on every few weeks already. The diagnosis was not made for several months. I was already following an ME/CFS forum at the time and I suddenly realised this was what everyone else was describing. PEM didn't explicitly come into it, although it was there.

 

Another point that I think is worth making is that it doesn't help diagnosis if patients develop a consensus terminology or jargon because a doctor will always want symptoms in that particular patient's own words. We deliberately discount any descriptions that come pre-packaged.

There is certainly value in trying to find concepts that doctors might found most useful in recognising the ME/CFS pattern and giving them names but that is a different issue.

What seems most easily recognisable as the same for patients discussing with each other is very likely not going to be what doctors find most useful for diagnosis.

 

I agree with Jonathan about PEM not being only due to exertion, and that the variability and time frames of the symptoms severity are important. Hypersensitivities probably don't qualify as "exertion" either. I'm not sure that my symptoms variations due to foods is different from PEM from physical or cognitive exertion. They are the same symptoms getting worse in the same way.

FWIW, I've always thought of my symptoms getting worse--from PEM or foods or other triggers--as "flaring up". The severity increased quickly, then leveled off before declining. I considered "crashes" to mean long-term worsening of symptoms after an abrupt flare, but I (very thankfully!) never experienced that. My baseline varies over time, and specific symptoms can come and go, but various triggers still cause temporary flares. The reliability of this flaring of symptoms might be the important part. Symptoms vary in other diseases, but maybe the reliability from specific triggers is uncommon. When my ME started, appearing as a type IV sensitivity, I could eat a specific food, and 48 hrs +/- just a few minutes later, my symptoms would flare up over the space of a few minutes, including a rise in temperature of several tenths of a degree. I assume that was IFN-g triggering ME's mechanism, but that's not the only possible trigger for the mechanism.

 

I agree, but it needs to be not so all-encompassing that people get the impression that we're just whiners whining about anything and everything.

 

The amplification of my symptoms during delayed PEM are 100% exertion related, both cognitively and physically. Follows the same distinctive pattern and recovery for decades.

 

Let me play devil's advocate for a minute. What you describe is my experience too, but what if we're wrong? What if it's much more nuanced or complex? What if additional mediators are needed?

By stating it's exertion related, we're inviting researchers to look for what appears to be a switch, which appears to get thrown after exertion. But if that's not what happens, they could do decades of experiments and still never find it.

Perhaps it's better that we avoid referring to our own mental models or presenting ideas tied up in bows. We answer the questions we're asked, nothing more. If we're asked to give a general picture, we describe what happens in everyday words. Never mind exertion, what did we actually do?

It's surprisingly difficult, but maybe it's a skill we could work on.

 

"Post-exertional deterioration" rather than "malaise" comes to mind as a simple term most doctors might understand, perhaps not the exertional part if they reject this concept right out. And then perhaps further elaborating that it is not just physical exertion, it can be cognitive which may also encompass emotional exertion.

My GP uses the word "flare" with me, this word meaning a worsening of symptoms without attributing a cause. I think it is neutral and is not used in psychiatry unless we are talking about the mental health consequences around a flaring of symptoms for a person with a medical illness eg a person with lupus would talk about their flare. Often times the person with lupus does not know what has caused their flare. It can just happen.

I find that with my ME, I am doing really well, not overdoing it and boom - symptoms appear. It is rather annoying this unpredictability but that is my ME. I then spend several days wondering what I did "wrong" but in the end there is no answer. This is the illness, something goes haywire - it's not psychological, it's not clearly exertion, not overly cognitive or emotional. It seems random and I doubt another doctor could give me a reasonable answer on causation - because they don't know.

I have started to use her language of flare with my GP as that is how she conceptualises it and I can see it's merits, though my word is still relapse (more of a medical terminology I feel very comfortable using) or crash. She has other ME clients and they will have their own language relevant to their culture. I think we need to speak a common language with doctors as Jonathan has suggested.

Perhaps "Post Exertional Relapse" may also be a useful term. The difficulty of ME is I think it has a lot of fluctuating symptoms that we have little to no control over. I think some doctors do realise this. It doesn't make it psychologically driven, rather it is just the way it is. Trying to characterise it for everyone is going to be very difficult as we all experience our illness differently, although of course, it also has established patterns.

 

I think you could be right to separate this. I need to think more on it and remember my experiences. These sensory challenges make a ME person sick/er but I am not sure whether they should be described as a PEM inducer, more bringing on brain irritability and other symptoms of weakness, nausea. It could be another 'something' like how PEM is after physical exertion but needs a different name?

 

I think you already got it? ‘Difficulties with sensory processing’. The impairment is with processing it and therefore it becomes overwhelming and painful. It’s not that we’re less able to tolerate the same amount of unpleasantness, it’s that we’re impacted more

 

My personal experience is that sensory issues such as noise result in rapid fatiguability which is different to PEM, though confusingly they can lower the thresholds for each other.

 

Yes. Very much so. I like the way you were able to entwine that whole dynamic.

 

Yes, Trish, but that leaves a whole lot of valid questions open.

Firstly, the theorising has already crept in with the association either by the patient or the doctor enquiring. We link things as if causal all the time. If there is a very consistent temporal relation we can strongly suspect causation but it still might be due to some confounding associated factor.

So the key question, which I had raised in relation to whether PEM was the best thing to focus on, is whether the relation to exertion is truly the most reliable or the most useful temporal feature when it comes to diagnosing and, ultimately, understanding ME/CFS.

My hunch is that the most useful feature to focus on is closely related to the PEM concept but not quite that.

What do we know about whether PEM is the most specific feature of the presumed common process we are trying to pin down with the idea of ME/CFS? Some people around 2003 in Canada suggested it. But how did they know it was the best thing to go for. If you think about it, they couldn't because ME/CFS is still self a placeholder idea based on PEM. In the history of medicine there are endless examples of how disntiguishing features have been got wrong. All students were taught that rheumatoid was symmetrical and psoriatic arthritis asymmetrical until Debbie Simmonds proved in an epidemiological study that the symmetry is the same, it is just that in RA more joints come up early so it looks more symmetrical to begin with. But if RA starts patchily it is asymmetrical.

Nobody is suggesting throwing PEM out of the window or that PEM is not PEM. The question is whether it is not quite the best marker. Only quite recently I realised that barnacles are not shellfish like limpets but crustaceans like crabs, even though they look for all the world like limpets. Medicine does that all the time.

 

Looks like this covers my comment already.

I’m really only talking about the symptom. It can be brought on or exacerbated by being in PEM. I wasn’t looking at it from the point of view of a trigger but I would say that it can compound in the factors that do bring PEM on.

My point when picking this one out (way back in the thread as I am starting from the beginning) is that if we’re wanting people to help us to avoid excessive noise, light …sensory stimulus, then we would hope to get them to understand that it’s not that I am more prone to complaining of the pain of a paper cut, but rather that I have already been debrided or severely burnt and the paper is cutting a lot deeper than my outer skin.
e.g. I am routinely able to withstand the pain of a deep filling next to a nerve without anaesthetic because I have so much experience with tolerating pain. But in PEM I would find that an ongoing loud noise would be an equivalent challenge of tolerance. My brain is not doing its job of filtering out irrelevancies and no matter how long it goes on it does not ease but gets worse, further abraded. I get the raw experience. That feeling a normal person has when a loud unidentified noise happens, the first moment, does not ease. My brain does not process it.

(Not sure if the discussion has moved on so am posting and can delete later)

 

@Jonathan Edwards, I have the feeling in this discussion of PEM (which I must admit I still don't understand) that you as a clinician are approaching the question of diagnosis in a way that's based on your training, and that the concepts used are perhaps very different to what we as patients might assume. I think you might have said as much some time ago.

If that's the case, is there an accessible summary article or similar that we could read to get our heads around it?

I've always been baffled by how people have taken a bunch of PwME and decided we're similar enough to form a group and then how they've determined what factors mean that a new case belongs in that group or not, and which symptoms are crucial to diagnosis and which aren't. The fact that we've had so many different sets of diagnostic criteria suggests that this isn't clear-cut.

 

I hate flare

it suggests to me just as if my muscles are more achy these days, my sinuses are less under control vs my medication + rinses etc so comes with a host of more pain, headaches but symptoms like choking and blood when blowing nose, my leg injury has flared up because I did something silly .. or often when my ME gets worse or particularly if I have a bug on top then it flares those injuries.

whereas for me PEM is a crash , passed out for a ridiculous number of days for much of it and it’s very much (when you aren’t allowed to stop but are in ‘rolling/cumulating’ PEM then the end point of that is absolutely something both severe and sudden

I agree with what I think @AliceLily and @Peter Trewhitt are trying to emphasise which is that PEM eventually stops you dead in your tracks. That at different severities you need to understand the differences between these because a trip downstairs for minutes vs a three day shopping trip could result in the same ‘hit’ (but be longer for those more severe and maybe even worse and certainly from a bad baseline to start with) so the disability is that limitation. Ie PEM says obviously that wasn’t a sensible idea level crash - what if what causes it to that level is so limiting you can’t live your life within that box?

I haven’t composed this into some together piece yet but that whole regularly, repeatedly etc phrase you hear if for PIP comes to mind used in an experiment context . For some they are talking about turning over in bed and a crash.

fir those talking about cumulating rolling PEM they are talking about eg having the weekend in a crash but it needed five days rest to ‘get over’ yet you had the two days letting you ‘pretend to function’ on a still half-broken leg and then repeat similar over threshold to the week before to add on top … and so on until if you didn’t have nine days in bed arranged youd lose your job for not turning up eg start just sleeping right thru your alarm and end up debilitated in some important presentation you couldn’t screw up (no matter how many coffees and cuppa soups you tried to prep your body to get up for it etc)

I’ve never detected the ‘might’ on PEM and looking back it’s been so barn door I just had to make sure I wasn’t in the wrong place at the time it hit or more accurately be grateful it could be hidden /at a time no one noticed I couldn’t wake if I was at home rather than supposed to be in the office three hours ago when I woke.

But some of the worst was holidays or short trips where I was very ill and with others , it wasn’t something where you could get in the car on time anyway or still go on that days thing and just seem ill or bad for the first bit like with other illnesses someone else might have. I was unable to move out of bed or explain myself or even engage in conversation with people who thought it could be negotiated with or predicted ‘when you’d be ok to join them’ and yet you looked like a selfish idiot as the night before you’d been stuck awake moving in pain and or restlessness (so some would think you’d just stayed up late and ruined it for everyone)

PEM was nothing ‘orthodox’ like people expect fatigue from other illnesses or someone ‘having a bit of a bad day’ in something that flared a bit. I probably had those too but managed those foolishly with all the tricks in those silly energy management docs like nicking caffeine and getting the adrenaline going, The nearest thing in that on-off cliff difference of ‘waking up’ (there’s the issue often you don’t even if someone tried to) with PEM , or indeed that night before (I realised ironically often worst about 30yrs after airplane to holiday) being ‘unorthodox/paradoxucal’ feels ill but doesn’t look like people expect yet stuff, is when you hear of someone who speaks of their back ‘suddenly going’

I think that cumulating PEM experience would be one I’d be intrigued for those of us who’ve been in those ongoing ‘manage the rolling PEM but you can’t get life to meet threshold’ situations because I think there’s a different pattern there as an in between to what people assume eg it would affect my sleep and the aches and pain were huge and growing . As exploring this probably has some insight for me.

because I can’t really remember a point where PEM was mild and not cliff like - if I ‘coped’ ie struggled thru a week of eg work without too much worry of being ‘found out’ just a bit late and not the most reliable then a social event at the weekend led to what was assumed was like full blown flu with tonsilitis

I’ve no idea whether if my life had been different there would be scaled back interim bits eg if I’d had a job where I could have followed my body but I did notice a 30min /week increase in hours (plus having been working for over a year by then) probably made me less reliable (until recently yes that’s how gaslighted I am that would be how I’d describe the illness when it was my body just bursting out in places as it couldn’t fit into the commitments it was being ‘trained into’ but the energy didn’t stretch to)

I’m looking forward to us hopefully really exploring this because I’ve so many years but so little chance to compare and get to the bottom of all these different lived ‘experiments’ over the years vs others who might have had equivalent situations and different they dragged through. Many of these I was unaware of PEM and laughed at when I described what I thought (it felt like my need for rest/sleep equated to what I’d done eg intense day 16hrs vs 8hrs not like the body stupid sleep hygiene catch up on it slowly over a week ‘bed times’ as with other people) , even the sleep worse if you don’t sleep when dog tired in day was laughed at as me being mad.

 

Agreed but don’t have the term to suggest

I will say that those who try to play down the inferences of the term ‘hypersensitive’ or ‘sensitivities’ to to use an example like ‘cos when anyone has bad flu they might be more sensitive to that bright light or loud sound’ which I don’t think is the same meaning being used as when the term ‘sensitivities’ fir these as symptoms is used.

Because it’s skipping the obvious but some of us would feel if describing to a layperson that we feel also similar to how they would if they had bad flu on top of glandular fever, dragged themselves through a marathon then were stuck in transit on economy flights for five days.

it’s decontextualised like the two are no longer connected. I remember years ago the one thing I remember of the MEA stuff was them emphasising/talking about flu like symptoms (which I at least sssumed meant the rheumaticsl aching everywhere on your body thing) . With this ‘and light and noise hard to bear’ anyone who’s had flu related. Without it those with bps ‘over sensitive’ proclivities of assumption have a field day

or worse the worse people get because getting more severe often is as well as feels like the accumulation of that ‘badly treated’ initial whatever and then the list of situations where you never get that recovery time others often had fir their flu in bed bith never comes but also becomes so much longer needed .