The development of an instrument to assess post-exertional malaise in patients with myalgic encephalomyelitis and CFS (2018) Jason et al.

This is also available from Jason's website here, https://leonardjason.files.wordpres...st-exertional-malaise-questionnaire-dpemq.pdf

Other questionnaires they have developed are here, https://leonardjason.wordpress.com/cfsme_measures/

 

At random, my thoughts on this question.

33. If you go beyond your energy limits by engaging in pre-illness tolerated exercise or activities of daily living, do you experience any of the following (check box if yes):
 An abnormal response to minimal amounts of physical and/or cognitive exertion
 An onset that is immediate or delayed by hours or days
 A severity and duration of symptoms that are out of proportion to the initial trigger
 A loss of functional capacity and/or stamina
 Post-exertional exhaustion
 Symptom exacerbation

"An abnormal response to minimal amounts of physical and/or cognitive exertion"
Given that the question asks about "pre-illness tolerated exercise or activities", I find the use of "minimal" here is confusing. Minimal compared to what? Pre-illness levels or post-illness levels.

"An onset that is immediate or delayed by hours or days"
As we've discussed elsewhere, for me this is two different things. Unreliably, I can over-exert and feel the consequences, but as long as it is not too much (whatever that is exactly..) and I'm able to rest sufficiently afterwards, it does not necessarily lead to what I consider to be PEM. For me, "A loss of functional capacity and/or stamina" and "Post-exertional exhaustion" (which to my mind are practically the same thing), are the main immediate consequences of over-exertion, but aren't PEM.

Now, it might be that when the answers are analysed, the points I'm making are taken into account, but taking it at face value, this collection of possible answers confuses and concerns me.

 

It is vital to make the distinction between immediate onset consequences after doing something and ones which are delayed.

It is also important to ask if consequences appear a dew days after doing something you did not feel was to much for you at the time.

These two issues are important in distinguishing the experience of people with ME and other fatiguing illnesses. I can't understand how Jason does not realise it.

 

My understanding is that Jason recovered from CFS after having mono. Is he basing his own personal experiences with PEM for these assessments?

You're right, he is missing these distinctive requirements/differences with his questionnaires.

 

I wrote this in another post.

I did too much 2 days ago and now I have a look of a hamster as my glands in the neck swell up and I have swollen glands under my arms too. All this plus dizziness and feeling fluey, including a sore throat.

Now PEM does not give that every time in every patients, but there have to be cases like that among patients with brain injury, stroke, ME, post chemotherapy and all the rest before they can claim they have PEM that is similar to ME. I see no sign that any of the researchers are looking for it.

 

I had similar PEM symptoms to what you experience @Mithriel in the earlier years of M.E., but not so much any more.

I used to have swollen glands for years w/o PEM but that has also disappeared.

My main PEM symptoms in the last 17 years are more pronounced towards autonomic distress, heaviness in my chest, arm/leg weakness, loss of appetite, feeling dehydrated et

 

I wonder if that could be because your immune system is too "tired" or damaged to work properly. Or it could be the way some research, I think on Tahoe victims, which found and overactive immune system for the first few years then becoming underactive.

 

I do feel that I have 'immune exhaustion' or exhausted T-cell response. I'm constantly fighting viral reactivations.