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Unintended Consequences of not Specifying Exclusionary Illnesses for SEID (Jason 2015)

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4
Dear Fellow bloggers:
Thank you for all your reactions to my post. I am actually out of town this past week, and am returning to Chicago today. I continue to be most appreciative of all this feedback. My team now has responses from about 500 patients, and we are trying to begin to analyze this data set where we are getting the opinions on PEM. I hope to summarize this information and get it back to the larger patient community. I appreciate all of your willingness to continue to provide us your thoughts.
For those of you who might like to see one of our articles on PEM where we provide some of our thoughts, it is attached.
 
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4
My interest in biological markers as well, and continue to publish articles in this area, as indicated in the citations in the attachment.
Lenny Jason
 

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SOC

Senior Member
Messages
7,849
My team now has responses from about 500 patients, and we are trying to begin to analyze this data set where we are getting the opinions on PEM. I hope to summarize this information and get it back to the larger patient community. I appreciate all of your willingness to continue to provide us your thoughts.
I am very much looking forward to the results of this study. While I have some concerns about selection bias in any online poll or questionnaire, I suspect you nevertheless gathered a lot of information that may help to characterize PEM... a very laudable goal.
 

Scarecrow

Revolting Peasant
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1,904
Location
Scotland
The big problem with describing symptoms for doctors is that it has to be concise. The ICC excerpt above is huge. That's nice for someone seeking deeper expertise, but is the average GP going to read all of that carefully enough to understand and accurately apply it?

In my opinion, the aspects which need to be emphasized are:
  1. a trivial exertional trigger
  2. a delayed response
  3. appearance or exacerbation of neurological, immune, and/or autonomic symptoms

I think these would also remove the areas where Jason was running into trouble. The symptoms associated with depression are not triggered by exertion - they are more likely to be constant. So yes, a patient with only depression might feel fatigued after exertion, but they were feeling the same way before exertion too. Hence there has to be an event which triggers the PEM episode.

The delayed response is a big one, and I think nearly every criteria gets this wrong. Yes, there is usually an immediate response, but that is very different from the PEM that hits the next day. And allowing PEM to be defined as starting during or immediately after exercise throws it into the more general basket of "exercise intolerance". Since exercise intolerance is far from unique, and especially prevalent with OI, it is important to make that distinction.

Hopefully leaving the "F" would out of the PEM symptoms would also help. Are depression patients getting painfully swollen lymph nodes, ataxia, and/or intractable tachycardia 24 hours after exertion? I seriously doubt it, unless they have been badly misdiagnosed.
I've been trying to figure out why I find your post so seductively simple (in a good way) and yet I can't fully agree with it. I think I've got it.

If you consider someone who has already had to give up work or studies and is able to rest much of the time, PEM (in my experience) tends to be expressed just as you describe. There's often a clear relationship between trigger and the delayed response. Any reasonable person would recognise that the trigger was truly trivial.

For those who are still working or studying and are struggling to maintain that activity, it's much muddier. Life becomes constant PEM. There's usually no obvious trigger - just the constant grind. This has also been my experience.

I see the IOM report as simultaneously inclusive and exclusive. Exclusive because anyone who has Fukuda CFS but without PEM as defined by the IOM does not have ME/CFS (SEID). Inclusive because I believe the committee deliberately blurred PEM by defining it as worsening of any symptom, including fatigue, after exertion, be it immediate or delayed. Presumably they did this because they were unable to distinguish between subtypes (citing paucity of research) but they recognised that any 'exertion intolerance' is indicative of a pathological process.
 

Mij

Messages
2,353
For those who are still working or studying and are struggling to maintain that activity, it's much muddier. Life becomes constant PEM. There's usually no obvious trigger - just the constant grind. This has also been my experience.

I'm still trying to understand whether this is true PEM though.
 
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For those who are still working or studying and are struggling to maintain that activity, it's much muddier. Life becomes constant PEM. There's usually no obvious trigger - just the constant grind.
Even when the trigger isn't obvious, or isn't even being looked for, there is still a trigger. And if those patients start looking for the triggers, they're probably going to find them if they're present.
 

Scarecrow

Revolting Peasant
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Location
Scotland
I'm still trying to understand whether this is true PEM though.
I think the point is that you'll never know unless you cease and desist from work or studying. Whatever it is, it certainly isn't normal.
Even when the trigger isn't obvious, or isn't even being looked for, there is still a trigger. And if those patients start looking for the triggers, they're probably going to find them if they're present.
The trigger is fairly obvious - but only in hindsight. It's the cumulative effect of the demands of work/study and daily living. Does this fit with a trivial exertional trigger? Not when you're going through it at the time and you know nothing of ME. If you went to your GP, would they recognise it? I think we know the answer to that: their thoughts are all beaded on an entirely different string.

If you're just about able to keep working and the rest of your life has gone to hell, I don't think that drying your hair is going to be the straw that breaks the camel's back with respect to PEM. That kind of trigger only becomes obvious when you're not in constant PEM.
 
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15,786
The trigger is fairly obvious - but only in hindsight. It's the cumulative effect of the demands of work/study and daily living. Does this fit with a trivial exertional trigger? Not when you're going through it at the time and you know nothing of ME. If you went to your GP, would they recognise it? I think we know the answer to that: their thoughts are all beaded on an entirely different string.
Yes, presumably the difficulty in noticing the pattern of the PEM trigger is the reason that the SEID criteria starts with "fatigue and impairment" rather than only requiring PEM. So if someone is finding themselves mysteriously disabled and run down, the doctor can then ask if exertion seems to be triggering it.

But we were talking about the definition of PEM, not the entire diagnostic criteria for the disease. PEM obviously is not the only symptom, nor the only symptom likely to be useful in diagnosis.
 
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Bob

Senior Member
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England (south coast)
Yep, PEM is a tricky and slippery beast. If I was asked "are your symptoms exacerbated by activity", during the first two or three years of my illness, then I'm not sure how I would have answered, because I was just incredibly unwell all the time. If asked if there was a delayed reaction to exertion, I simply wouldn't have known about it. I did notice that I would collapse with small amounts of exertion but this was a persistent and immediate exhaustion. I was unaware of the way activity maintained the level of my symptoms and caused delayed deterioration. I was simply experiencing a chaotic and bewildering illness with an onslaught of new and distressing symptoms. So, during the early years, I couldn't have known that there was a delayed reaction to exertion, as I was in constant ill health, and unknowingly experiencing constant PEM.

At about year three, I discovered a pacing booklet (I hadn't heard of pacing before) and then started an activity diary. Very gradually, this allowed me to understand the link between my activities and the level of my symptoms. But it was a very gradual and detailed analysis of my diary that allowed me to unpick 'activity vs symptoms', and it was a very slow learning process. The diary and the resting/pacing allowed me to gain insight into PEM. This greatly transformed my understanding of my illness. But it took me a long time of intensive resting and pacing before I could actually see the difference that resting/pacing made to my health. It was partly because I was so severely affected that I had to drop out of work that I was able to test the pacing theory on myself.

Also, since gaining insight into it, post-exertional exacerbation has always been exceptionally clear-cut, for me, which has been reassuring in a way because it's given me certainty about my diagnosis, but I I think for many others PEM is not so obvious and is more difficult to pin-point.
 
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Effi

Senior Member
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1,496
Location
Europe
If I was asked "are your symptoms exacerbated by activity", during the first two or three years of my illness, then I'm not sure how I would have answered, because I was just incredibly unwell all the time. If asked if there was a delayed reaction to exertion, I simply wouldn't have known about it. I did notice that I would collapse with small amounts of exertion but this was a persistent and immediate exhaustion. I was unaware of the way activity maintained the level of my symptoms and caused delayed deterioration. I was simply experiencing a chaotic and bewildering illness with an onslaught of new and distressing symptoms. So, during the early years, I couldn't have known that there was a delayed reaction to exertion, as I was in constant ill health, and unknowingly experiencing constant PEM.

I had been thinking about this and just logged on to write something, only to find out that it had all been written exactly as I wanted to say it, by @Bob. Thank you, saved me some typing there :)

There's a double problem re: PEM I think: otoh doctors are clueless, and otoh patients are just as clueless. This leaves us in a VERY dangerous vacuum. I spent at least two full years PEM-ing to the max without even realizing what was happening. During that time I filled out a lot of questionnaires. All of them resulted in a diagnoses of '(very) mildly affected'. Four years later I'm still housebound, unable to take care of myself. In hindsight I think this questionnaire debacle happened because the symptoms of this illness are so out of the ordinary that they're hard to grasp at first, and generally first line doctors are absolutely clueless. Imho I think doctors are the ones who should be in the know. But until they catch up there should be a questionaire so precise that patients aren't left out in the dark. Let's see if we can tame that tricky and slippery beast aka PEM! (dixit @Bob )
 

Sidereal

Senior Member
Messages
4,856
PEM was not at all obvious to me back when I had "mild" ME and I was constantly running myself into the ground by going to school, working etc. These days I am disabled and rest/pace punitively so it's incredibly easy to tell when I am in PEM because there is a marked difference between my normally well-managed symptoms (when staying within the energy envelope) vs. rare excursions outside of it which cause severe symptom exacerbations. The problem therefore is how to elicit PEM from patients who are still somewhat functional and trying to maintain their daily activities. Some of them are likely in permanent PEM.

You also have a lot of folks who are so severely ill that they have constant symptoms so may not notice PEM because their condition is constantly awful and chaotic no matter how much they rest/pace.
 

alex3619

Senior Member
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13,810
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Logan, Queensland, Australia
PEM was not at all obvious to me back when I had "mild" ME and I was constantly running myself into the ground by going to school, working etc.
There are a whole lot of issues here, all compacted together. Social and personal expectations have us push through and ignore fatigue and mild symptoms. Constant symptoms all tend to be overlooked. Seeing the pattern and deciding what triggers it takes not only time but a willingness to ask the question.

It reminds me of an ? Albert Einstein definition of insanity: repeatedly doing what does not work. We get stuck in that line of thinking till we finally realize it is not going to work no matter how many times we tried (e.g. push crashing) and doctors are no less vulnerable to this logical trap.

I did the push crash thing for much of my life. For most of that I never heard of ME, barely heard of Yuppie Flu (no, can't be me) and never heard of pacing. I had to figure it out on my own.
 

alex3619

Senior Member
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Logan, Queensland, Australia
You also have a lot of folks who are so severely ill that they have constant symptoms so may not notice PEM because their condition is constantly awful and chaotic no matter how much they rest/pace.
I think for these people it might be a case of being awake, drinking, speaking, lifting their head up, all push them over the limit. Its like basic activities of life are too much, and PEM may become continuous.
 

alex3619

Senior Member
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13,810
Location
Logan, Queensland, Australia
I'm thinking about once a year visits with more routine stuff being handled by the local GP. It's very from ideal, but better than what we have now. And better than leaving PWME completely in the hands of local GPs.
What happens here is that a doc then gets thousands of patients, and care is inadequate. Lets presume a million patients in the US. Let us further presume 1000 patients per specialist is doable if its mostly being handled by general practitioners. That still means we need 1000 docs, and that's not allowing for allied and similar diseases. I don't think there are anything like that number, and many of our specialists are retiring from time to time. A few new ones are cropping up, but without appropriate medical education systems in place this gap will not be filled.
 

Mij

Messages
2,353
I think for these people it might be a case of being awake, drinking, speaking, lifting their head up, all push them over the limit. Its like basic activities of life are too much, and PEM may become continuous.

Well then, it sounds as though we need to get rid of the term PEM if some are in that constant state? There isn't 'post' or delayed in this case if the dysfunction is presenting itself during.
 

Effi

Senior Member
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1,496
Location
Europe
Well then, it sounds as though we need to get rid of the term PEM if some are in that constant state? There isn't 'post' or delayed in this case if the dysfunction is presenting itself during.
When it's continuous I think it's almost impossible to know which crash is a result of which specific action. We call it a push-crash cycle, but it's more like the pushing and the crashing are simultaneous and constant. No delay.

Post exertional to me always sounds as if we're fine during exertion, which we're not. I feel totally awful during exertion, which probably is a sign that I'm pushing my energy envelope to begin with. For me the 'malaise' (what a word, it does sound like nausea or something) is pretty constant, not like it suddenly appears out of nowhere during a crash. It's definitely symptom exacerbation - symptoms were there to begin with, they just temporarily get a lot worse.

Whatever happened to the term PENE? I feel like that is already a slightly more accurate description of reality.
 

Bob

Senior Member
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16,455
Location
England (south coast)
Well then, it sounds as though we need to get rid of the term PEM if some are in that constant state? There isn't 'post' or delayed in this case if the dysfunction is presenting itself during.
As @Effi says, that's why post exertional exacerbation is a better description.

Defining this characteristic of the illness (PEM/PENE) definitely helps patients, clinicians and researchers to define, characterise and understand the illness in its entirety, and to distinguish it from ideopathic chronic fatigue. It's useful for patients to be aware of it so they can learn to understand and manage the illness. It's useful for clinicians so they don't prescribe exercise regimes. And it's useful for researchers to be aware of it so they can understand the illness and investigate clearly defined cohorts and investigate this specific biological characteristic.
 

Mij

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2,353
I understand the important implications for researchers and clinicians who have an understanding of M.E/SEID.

From what I'm reading is that it's not delayed/post for everyone, for some it's constant and yet some are able to work full time in a constant state of "PEM". Is it because they don't have OI? Is it the OI patients that have worse PEM?

How can their PEM be the same as what I'm experiencing when mine is delayed for 16hrs and I"m unable to stand upright, slurred speech, racing heart, unable to put 2 sentences together etc etc? If I were in that constant state of I would eventually end up in the emergency room. PEM for me is a very distressful physically and emotionally. I can't imagine being in that constant state. I would kill myself.

If it's an exacerbation or amplification of symptoms then why not just say that? The patient can be aware that constantly overdoing or pushing/crashing is not advised.
 
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RustyJ

Contaminated Cell Line 'RustyJ'
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1,200
Location
Mackay, Aust
Although I get the usual delayed PEM from exertion, I also get Saturday syndrome. I have read about this in non me/cfs related articles. In my case, since I am under stress during the working week which keeps me going (I trade lying down in bed, lol, though it is little more than a hobby because of the capital involved) the stress-free Saturdays end up with me lying fetus-like in pain and fatigue etc in bed, barely able to think. So the adrenaline during the week might be ramping up my immune system, but on Saturday the immune system crashes? Or perhaps just adrenal exhaustion. However there appears to be no difference between my normal crashes and the Saturday ones.
 

Sidereal

Senior Member
Messages
4,856
How can their PEM be the same as what I'm experiencing when mine is delayed for 16hrs and I"m unable to stand upright, slurred speech, racing heart, unable to put 2 sentences together etc etc? If I were in that constant state of I would eventually end up in the emergency room. PEM for me is a very distressful physically and emotionally. I can't imagine being in that constant state. I would kill myself.

People with very severe ME are in that state constantly. Some do kill themselves as a result of this 24/7 torture.