Is the NIH/CDC going to use the right PEM definition for all their future research? Do patients need to act? Deadline 31 Jan

Maybe I'm misreading/misunderstanding.

I can suffer from both immediate and delayed onset PEM depending on whether I am in a good phase of bad phase of the illness.

Also delayed onset is variable for me. I'm not really sure of all the factors that cause it to vary but if for example I both overdo it and it's a hot day that will make a difference. The time of the month could also affect this.

All I can say for certain is if PEM hasn't kicked in after 72 hours then I got away with whatever it was I did.

 

This was my thought as well reading question 19, I would want an "any of the above" option due to the variability that I experience.

I also think that for "21. If yes, your prolonged, unpredictable recovery period that may last (check one box below):" to go from "Within 24 hours" to "Over 1 week" seems to miss the 1 week or less duration - which may be intended but seems odd to me.

 

@Leonard Jason
As I may be so bold as to give my humble opinion, I would say this new questionnaire much better summarizes what I personally experience.

I am always bold enough to adjust questionnaires to my experiences (or don't answer at all and ask), so I would choose delayed and immediate onset and would probably add some notes, e.g. it varies. That's something that holds for me, too.

 

Thank you for sharing this. Not an easy task to define PEM.
Would you ever consider the "PE Deterioration" label instead of "malaise" which tends to remind me of swooning Victorian ladies.

 

The most severe patients may not be experiencing PEM as many of us experience it. You can't get them to exert themselves as they are always in a state of PEM/Crash and may not even be able to get out of bed or if they are can only get to the bathroom or into the kitchen.

 

This is true. But it may no longer be PEM and more the reality of just how far into the disease they now are. Plus, they are not trying to diagnose severity with PEM checklist, only use it as part of the diagnostic tool of this initial research. Once they can diagnose for research, they can look for biomarkers and then with the most severe use that diagnostic test to prove and diagnose they have ME/CFS. What they aim to do with biomarker tests is if a patient is exhibiting unexplained symptoms and don't come up positive with MS or EDS and don't fit criteria for say ALS, they could give a new biomarker for ME/CFS test to rule in or out they have ME/CFS.

 

yes.

 

Unless you continued activity? You mean 72 hours after you stopped? That's what I find.

 

My PEM occurs between 14-16 hrs after going over my limit. So, if I suspect I may have gone over and PEM doesn't set in within 24 -72 hrs then I know I'm in the clear, especially at the 72 hour mark.

There was only one incidence in 27 years of M.E when PEM set in at the 22 hour mark. I don't know why it was different that one time. It caught me by total surprise.

I would never share this with anyone except an M.Eer because they would think I'm nuts.

 

Yes. 72 hours after one discrete incident of exertion/activity.

Eta - for me PEM can sometimes start on day 3 after the activity.

 

Exactly, exactly exactly. For example, No disrespect to the MEA AT ALL, but i always hated the way they describe one of our symptoms as 'exercise induced muscle fatigue', i mean surely everyone has that? everyone's muscles feel tired after exercise - it just depends how much exercise - & that feeds in to the deconditioning theory.

The point is that, having been a sporadic exerciser in my pre ME days, i would, several times a yr, start a new program & be barely able to walk the next day - eg after horse riding i couldnt straighten my legs, but i would never report that as illness - I just went in to work walking like a cross btwn a penguin & John Wayne.....that is a normal sensation. And incidentally this is one of the things that infuriates me most about the deconditioning proponents' twaddle about 'misinterpreting normal sensation' - it's so patronising to assume that a middle aged woman cant tell the difference!) - the point is that what we're reporting is NOT normal sensation.

Its not that there is merely an abnormal amount or severity of pain/fatigue after exertion, but that there is abnormal Type of pain/'fatigue'/flu like symptoms/cognitive decline etc.

I mean i once started a such a program where in the days after starting it i was heard to say "I'm so knackered i feel ill", but now i realise i didnt really mean that - I was exhausted but i didnt actually feel ill, it was just a way of saying 'utterly exhausted'...... never once was I unable function, unable to understand written or spoken english, never had to have things spelled out to me as if i had a severe learning disability, never once went to speak & only slurred gibberish came out, i never once swung violently from hot to cold, & my elbows wrists & fingers never throbbed when i'd been exercising only my legs. And i never once felt a footstep on my bedroom floor vibrate nauseatingly through my whole body, or found the sound of a rustling paper bag or the slightest bit of daylight excruciating.
It's completely abnormal, it needs a new word, none of the vocabulary we have comes anywhere close imo.

Which is why @Leonard Jason, i really like the new version of the questionnaire - the use of the word abnormal is critical imho. And thank you SO so much for coming here to share this with us, you are doing such excellent work in a very tricky area. Kudos to you for being willing to discuss in open fora like this. Its very much appreciated.

Yes this is true for me too.

I find sensory issues get overlooked a lot in research but they're such a huge factor in my ME, i often think they would be a good way of subgrouping.... but sorry thats a tangent.

ETA the word 'merely'

 

@Leonard Jason -I am very glad you and your team are working to operationalize this questionnaire! Thank you! And thanks for sharing it here.

Will there be guidance as to what "abnormal" entails and whether or not "recovery period" refers to the period during which one is returning to baseline (as opposed to "recovery" to full health)? While many(most?) patients would understand these terms (as well as "out-of-proportion"), perhaps making sure the terms would be readily understood by new patients/researchers/clinicians would be of use.

I am somewhat surprised that further increased sensitivity to light/sound/smell/touch (and sensitivity to foods) isn't asked about.
Earlier in this thread others have mentioned that PEM onset can be immediate or delayed in the same person. I too have seen this occur and wonder if the wording of questions 17/18 can be modified to allow for that.

ETA- I forgot to ask - is question #11(Lightheadedness Y/N?) asking about increased orthostatic symptoms?

 

It's just that, for me, it's important whether I've rested after the activity. If I have, then I have a fairly normal delay. But on the occasions where I have to exert myself a lot/again before the fatigue sets in, sometimes the fatigue can be severe (lasting about a week). Obviously for someone in worse health, it could take even longer, and may even be permanent.

 

@Denise since you experience both immediate and delayed PEM (I have as well), can you say that they are the same experience?

My experience is that they are a different set of symptoms. The delayed includes autonomic dysfunction for me, while the immediate PEM does not. The immediate onset is not as distressful and I can deal with it quite well.

 

I wonder whether a 'varies' or 'don't know' option can be provided for most/all questions. There are several questions that I can't answer - at least at present - as I don't really know.

 

@Mij - generally what I have noticed about the immediate onset is the pwME being immediately rendered monosyllabic (or only able to grunt) and limp as a rag.
Autonomic dysfunction is a constant - with or without PEM but it is worse during PEM (immediate or delayed).

 

I generally only get that briefly. Not sure about the 'limp' bit, but I think it's quite brief. At least it used to be according to a notice I put up! But if I get whatever-it's called (the zig-zag patterns and inability to speak properly or write properly), which I had yesterday but is thankfully not very frequent, it lasts up to half-an-hour - quite different.

 

Here it is described: https://illanddesperate.wordpress.com/2015/08/03/another-migraine/ But I don't always get a headache with it. I diagnosed it as scintillating scotoma.

 

@Leonard Jason - question #27 asks about precipitants of abnormal response including positional changes. In parentheses it says "...from the standing to lying down)". I am guessing "the" should be removed here but also wonder if the wording was intended to be about going from lying down to standing rather than the other way around.

 

Yes that is exactly how it is for me.
Attempting to continue to exert at this point (trying to stand/crawl etc) causes vomitting, but if i can lie still on my left side for an hour or so in dark, warm, silence, I can recover enough to start moving about a little bit & talking again (if very slow & slurry). The flu-like stuff doesnt come till later.