PEM discussion thread

I think so too, but the problem is diagnostic criteria. Its less clear ME is the issue when the severity is very mild, so many may go undiagnosed. Yet if you relax criteria you might get more patients who would be better diagnosed with something else. This problem will not go away till we have an objective diagnostic test.

 

Isn’t it problematic, without any agreed biomarkers, diagnosing very mild symptoms as ME, when there are so many other options to explain the symptoms?

I am not saying very mild ME does not exist, I have experienced periods in the course of my illness when my symptoms have been very slight and indeed one period of several years when I believed at the time I was ‘cured’. For example after some five years of very limiting ME I improved to the point of no significant symptoms and believed myself fully recovered, though in retrospect I did still have some minor symptoms. Then I experienced a major relapse associated with a presumed bout of seasonal influenza. Had I gone to a doctor during that period without the previous years of ME, a diagnosis of ME would never have been considered.

Over the thirty years of my ME I have experienced large variation in the severity of my impairment and in the symptoms experience. The difference between when I have been most severely impaired, bed bound in a darkened silent room and when I have been minimally restricted in what I was able to do, had I not experienced them as part of an ongoing process, would have been such for me to consider them distinct conditions.

Though I personally believe that, ignoring misdiagnoses, what we call ME is largely a unitary condition, albeit with surprisingly heterogeneous symptomatology, until we have an accepted diagnostic biomarker we can not be certain if we are dealing with one condition or with an associated grouping of distinct pathologies.

[Sorry cross posted with others above making this point much more succinctly.]

 

It depends on the type of cognitive effort. Back when I still got PEM, socializing and driving were the most noticeable triggers, and the PEM from driving increased with the driving conditions (icy roads at night were horrible). Number-handling didn't seem to be a problem nor did strategy computer games.

Since PEM is no longer an issue for me, cognitive exertion doesn't seem to cause any abnormal symptoms. It's more likely that my ME symptoms make it difficult to even start difficult tasks. Procrastination wins!

 

I have an alternative hypothesis: that it's not the overall effort of the activity, but the microtears that occur when using your muscles in ways that you don't usually do, which in turn activates the immune system. I could ride my bike for hours without triggering PEM, but climbing a ladder once (something I hadn't done in months or years) would trigger fairly severe PEM. Climbing that ladder strained my muscles in different ways than biking did, while my cardiovascular demands were so much less than for biking. Likewise, I could dig soil for hours without triggering PEM, if I used my usual body movements. A minute or so of using a drastically different technique (stabbing the shovel forward into a hillside) triggered significant PEM. Again, I expect that the unusual technique tore more muscle cells, triggering immune cells to clean up the damage. A third example: hours of normal shovelling was hours of sustained elevated exertion, but a minute or so of washing a window (arms higher than most of my activities) would trigger PEM.

I'm pretty sure that x-country skiing would have triggered my PEM too, since that isn't something I normally do.

If you reconsider your experiences with those different activities, which hypothesis fits better?

 

Interesting. Very different for me. It was always sustained intensity, usually an hour or more. I never had any trouble with lifting all kinds of heavy things, straining or anything like that.

I would agree that working with my hands above my head was worse though, but only for sustained periods (though to me that again points to something cardiovascular). Now doing anything for even a couple minutes with my hands even a little above my head is a definite trigger.

 

Perhaps this more common than I realised.

I had gone half time at work after four or so years and then improved dramatically and by six years post onset believed myself recovered. In retrospect there were some symptoms, but not enough to be a practical issue. I increased my activity taking on a small business and a large garden on top of my part time work, but then, associated with a bout of presumed influenza, had a major relapse. I have not been well enough to return to any work in twenty years plus since.

I now have all the symptoms I had in the first years of ME but over time and with subsequent relapses new symptoms have been added.

 

Thinking about that vicious spiral that PEM seems to be, where if triggered into PEM, you become more sensitive to being further triggered or the bar becomes lower...this seems to be something people who never experience PEM cannot understand, as if it is a completely alien concept. However it is present in other diseases, right?

For example, if you get a migraine from being exposed to very loud noise, you become more sensitive to loud noises which make it worse. There is a similar process with hypoglycemia (according to https://pubmed.ncbi.nlm.nih.gov/11353874/) and sort of described in articles about "Overtraining Syndrome" aka Paradoxical Overtraining Syndrome. There must be many others?

Point is, it's not just the fact that activity is a cause and trigger that is hard to get people to understand, but also that once you've done too much your bar is much lower. Do other examples from other diseases and syndromes make it make more sense?

Edit: noise, not noose!

 

I've used the example of a sprained ankle, as it's an injury most people have probably had at some point. Even when the ankle's recovered enough to walk on, any little jolt will set it off throbbing again; and if you aggravate a sprain injury by twisting the joint again even slightly, it can double the time it takes to heal fully.

I've tried this on several people who've asked about it, and it seemed to make some kind of sense to them.

 

As someone who has sprained ankles many, many times per year as a teen: yup.

Way, way too many times. Seriously it was getting silly at some point. I guess growing 9 inches in a year will do that.

 

Ha, now you mention it I have a similar thing with my right wrist. I had a nasty fall once when I was playing football (soccer) as a kid and kind of landed on my right hand with the palm flat on the ground and my body weight kind of bending the joint the opposite way to how it's meant to bend!
And I managed to give myself tendonitis around my left wrist during a period of intense guitar practice with bad technique.
Both of those past injuries can very easily start to hurt a bit or just feel weird or tender if I use either hand "badly" now when I play..

 

I was basing that on something that Tony Komaroff had said/written (sorry, can’t remember where). That would tie in with his 1991 research you mentioned, presumably it was that that fed into the 92 definition.
Though the fact, they use the term postexertional malaise in the abstract without defining it, does suggest it had been used before.

 

Google Books ngram viewer suggests it was around there, maybe 1988?
https://books.google.com/ngrams/gra...1950&year_end=2015&corpus=en-2019&smoothing=3

 

Origin of the phrase post-exertional malaise

Interesting thanks.

edited for clarity
So maybe the sequence of events goes something like this

1988: The previous CFS definition, Holmes, came out (see above) and did not include the term PEM, instead using:

Prolonged (24 hours or greater) generalized fatigue after levels of exercise that would have been easily tolerated in the patient's premorbid state.​

This is a post exertional requirements, and also introduces a minimum period of 24 hours – but only refers to fatigue, and not malaise.

1988: first use of the term postexertional exertional malaise.
1991: the phrase appears in a research paper by Komaroff describing symptoms of large cohorts of ME/CFS patients.

1992 the Fukuda definition (Komaroff is on the case, definition team) is published and includes post exertional malaise as an optional symptom.

 

I don't think so. The term PEM was coined in 1992 specifically for (ME/)CFS precisely because there was no existing term to describe such an unusual symptom. And Nancy Klimas is an immunologist/clinician who sees both ME and HIV/Aids patients. I'm sure she would have commented if Aids patients have PEM.

In the data I've seen, Chronic Hep C is associated with far less fatigue than ME



Thank you, @Simon M

I think you might miss what I am trying to say. A patient with HEP C could have PEM and does not know it or could have ME/CFS as an additional diagnosis, and it would be declared that this must be due to some *other factor* while this must not be the case.

Let's take HIV. There are quite a few HIV patients diagnosed with ME/CFS. Who tells us that there must be some other hidden environmental factor that is discordant between an HIV-positive person with ME/CFS and one HIV-positive person without ME/CFS? Could it not be instead a purely genetic predisposition leading to, let's say, insufficient handling of, e.g., oxidative stress? Most data point in that direction, I believe and we already *know*(?) that many different pathogens can trigger ME/CFS (and oxidative stress).

It might be a bit of both, meaning that some triggers are more likely to cause it than others because some and not other insults diverge on the necessary biological pathways causing this disease state we currently call ME/CFS. I figure it like a loaded gun just waiting for a trigger to arrive.

 

I think the answer to this may be a study which looks in detail at fatigue i.e. using actimetry - as per Jonathan Edwards's suggestion in a number of posts (some recent).

 

Hello, I am 35 years old and trying to get some help with something that has been an ongoing problem since I was 22, and seems to be gradually getting worse. I used to love working out, however lately it seems even the simplest of tasks such as lifting a box of Christmas decorations, has me feeling unwell for several days after the fact. Soon I fear I won't be able to do much of anything during my day. Whenever I work out whether it's lifting weights, or doing bodyweight exercises such as pushups or pullups, I very shortly into the workout end up with pressure around the neck and ears like blood vessels constricting perhaps, and it's harder to take a breath. I have blurry vision sometimes, can't think clearly and feel out of it. I feel irritable afterward, will have angry thoughts usually about events from my past and will sometimes end up with exertion headaches later that day/the day after.

These symptoms are caused easily just by a little bit of exercise or moving around a lot/lifting something, or even something as simple as doing some gardening. It usually lasts for days after, and is gradually getting worse over the years. Doctors don't seem to know what it is, I have seen a Cardiologist, Respirologist and Neurologist several years ago and they can't seem to find any cause. The only medical issues I have is that I have epilepsy, and take medication for that daily. I do not believe that it has any relevance, just thought I would include that background.

Any thoughts as to what it could be causing this, or who to best ask for help would be GREATLY appreciated! Thank you so much for taking the time to read this