Patient perceptions of post exertional malaise, 2018, Jason et al

Totally.

I can succumb either from a single over-exertion, or from a slow accumulation of little extra amounts of exertion. The latter is the most difficult to predict as the accumulation can be over a period of a couple of weeks..

 

Exactly. 10 days after moving, PEM hit today after carefully avoiding as much as I can but unable to avoid overextending just a little bit every day. Took just long enough for it to catch up with me that I started hoping, for the hundredth time, that I might have leveled up!

I think this cumulative effect is why PEM is almost impossible to avoid even when you are pacing really well (or think you are).

 

Exactly @andypants and this could also be a reason GET seems to work.

Therapist hat on:

Take several weeks to “establish a baseline”, and ensure it is well below patient’s current activity levels.

Then oh so gradually increase in a graded manner. (If chosen baseline is really well below the patient’s actual exertion threshold, then as a therapist you can takes ages to move the patient’s activity slowly upwards all the while congratulating yourself on the success of the GET.)

Of course if the patient crashes, it is not your fault!

Oh no, it must be the patient’s fault for not adhering to your instructions. They pushed and crashed! Of course they did, because everyone knows that gradual increases are safe!

Hat off.

We know small amounts of extra effort accumulate. We know Adrenalin can mask early signs of problems.

It seems therapists pushing GET don’t acknowledge this.

 

I completely agree that PEM can be the result of an explosive energy event (e.g. picking up, lifting And carrying a heavy thing or running up the stairs etc) or more commonly nowadays the accumulation effect.

What I seem to have noticed is that if I establish a low overall weekly envelope and maintain this (e.g. setting strict heart rate limits and steps etc) then the effects of PEM are much reduced compared to the effects of one big blowout explosive event. So if paced well the gradual accumulated Activity PEM seems to be quicker to recover from and milder.

Of course I could increase my weekly envelope and then I would crash as hard as before and it would take longer to recover from. Or annoyingly I could have a cold that pushes me over the edge quicker even when I’m in the lower envelope.

Don’t know whether that makes sense. It’s nice to know I’m not alone crashing still after all these years pacing even when being good. Difficult not to beat yourself up sometimes when your tracking everything!

 

@arewenearlythereyet makes complete sense. That’s it exactly. Good pacing won’t save you from PEM, but you will avoid the big, really horrible crashes. I no longer get those horrible ME migraines that would last for days and leave me paralyzed, for example.

 

I think this relates to the same study but am not fully awake yet!

Source: Frontiers in Pediatrics

Preprint

Date: October 15, 2018

URL:
https://www.frontiersin.org/articles/10.3389/fped.2018.00330/abstract

The development of the DePaul symptom questionnaire: Original, expanded, brief and pediatric versions
----------------------------------------------------------
Leonard A. Jason(*), Madison Sunnquist1

- DePaul University, United States

* Correspondence: Prof. Leonard A. Jason, DePaul University, Chicago, United States, ljason@depaul.edu

Received: 22 Jun 2018
Accepted: 15 Oct 2018.

One of the key requirements of a reliable case definition is the use of standardized procedures for assessing symptoms. This article chronicles the development of the DePaul Symptom Questionnaire (DSQ) to assess symptoms of the major chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) case definitions. The original questionnaire has been modified and expanded over time to more fully capture symptoms from various adult case definitions, and a brief as well as pediatric version have also been developed. The DSQ has demonstrated strong psychometric properties in terms of test-retest reliability and sensitivity/specificity, as well as construct, predictive, and discriminant validity. The DSQ allows for a well-defined characterization of a patient's illness and allows scientists and clinicians to improve diagnostic reliability when employing case definitions of ME and CFS.

Keywords: Chronic fatigue sydrome, myaglic encephalomyelitis, Case definitions, criterion variance, DePaul symptom questionnaire

 

do these symptoms sound familiar to people?

• Headache or a feeling of pressure in the head
• Confusion or feeling as if in a fog
• Dizziness or "seeing stars"
• Ringing in the ears
• Nausea
• Vomiting
• Slurred speech
• Delayed response to questions
• Appearing dazed
• Fatigue

one on the list that I temporarily excluded is:
'Temporary loss of consciousness'

but I gather that some severe sufferers also get this (although, at times I do feel like I'm going to pass out).

these are actually the symptoms for concussion.

the only other symptom I removed from the list was :
'Amnesia surrounding the traumatic event'

as in our case they would then call it conversion disorder

https://www.mayoclinic.org/diseases-conditions/concussion/symptoms-causes/syc-20355594

 

interesting! I wouldn't have recognized them.

The concussions I had had the following symptoms - in the order of increasing time:
headache
terrible (!) headache, like an implosion
nausea
very, very sleepy, falling "asleep", "deep" sleep, heavy exhaustion
unable to answer/speek, unable to open eyes
vomiting
unconsciousness (the first time for days).

So...do you say PEM shares similarities with concussion?

Edit: that's maybe not so wrong...