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

In my case it's three things:
1) The muscles are weaker from the beginning compared to pre-illness; they burn nearly istantly and then weaken faster than I knew it from training. No short-time recovery (e.g. as in HIT).
2) More and longer muscle ache after "too much" training, and muscle ache occurrs with very low-level usage, i.e. abnormal severity/amount of pain/fatigue during/after exertion.
3) Another type of pain and exhaustion.

 

Thank you for this. I recognise the experience much better in these questions.

A couple of possible tweaks:

I know that questionnaire methods all tend to use this sort of repeat the sentence with just one word changed format.
I find it very hard to read on bad days. Perhaps if you can’t simplify the question you could bold the word that changes?
Eg 23.The severity and duration of your abnormal response to physical or cognitive exertion symptoms is often out-of-proportion to the intensity of the exertion. Yes____ No_____
Etc.

When I first discovered PEM and got it more under control I had a very distinct delay of 24hrs.
Before I figured out the pattern, and when I am not managing myself as well, I can experience some symptoms (usually relatively subtle but I take them much more seriously because of what I have learned that they mean for further exacerbation) almost immediately (during a long exertion or just after).
I might therefore be tempted to say yes to immediate symptoms as well as delayed.
I think this might be confusing to the data as my most significantly abnormal response is delayed. The other, more immediate response, is milder and only important to my learned management of it.
If you have space for it, perhaps some indication of severity (degree of abnormality) might help here.

The first symptoms listed have this problem for me too.
I can say yes to a lot of things but some yeses are a shout of recognition and the others are a cautious agreement.
Maybe a “yes definitely” and a “yes, a little”? Not to distinguish between patients nor absolute severity but to distinguish between answers from the same person.
Or else some indication that you want only the most definite symptoms, the symptoms that are more than just a little.

I could be wrong about that as I also know that a new symptom seems more significant to me than an old one despite severity. A patient will tend to measure against their own normal.

Again, this looks much more useful to me. Thank you.

NB I haven’t finished reading the responses so apologies for double-ups. Will try to edit down when I have read more. Others may manage to be more succinct.

 

Yes sorry @Inara i realise i should have said "not that there is merely/only an abnormal amount or severity of pain/fatigue.... etc"

will edit that.

 

Thank you, @Leonard Jason , for including your team's latest efforts to define PEM. I have four comments:

1. I'm not sure if, on a bad day, I could understand and answer such a lengthy questionnaire, so the circumstances under which the questionnaire would be used are key;

2. This iteration is a big improvement over the one provisionally chosen by the PEM subgroup;

3. Shouldn't it be stated that the questionnaire is looking for a negative abnormal response? and

4. There needs to be more attention paid to other kinds of exertions or bodily insults that can trigger PEM.

I, for example, have had my worst episodes of PEM triggering (from which I never recovered to previous levels) from a bad fall, a near-drowning event, ehrlichiosis, and a 5 minute cardiac and respiratory arrest in 2003 for which I received CPR and broken ribs. This occurred during an angiogram and I almost died.

I'm not sure I've ever been out of PEM since first becoming ill in 1990. At that time, I don't think anyone understood that resting and pacing could be helpful in recovery. So I tried unsuccessfully to carry on a life for many years---always feeling like s**t---and I was still somewhat functional until the angiogram. My ME/CFS was much worse afterwards. Since then I have been mostly housebound.

 

I am severely affected - bedridden 24/7, can mobilise on to my chemical toilet at the end of my bed but no further. However, I am not as severely affected as others who are bedridden - as I experienced for 16 months 13 years go - as I can type a little most days, watch a little tv, have conservations up to 20 minutes with long breaks in between. Therefore, I still experience a form of PEM as if I exceed the small acitivies I can do within my bed such as some talking, typing, reading, my symptoms, pain, sensory sensitivity, energy levels and sleep function will deteriorate further and I develop flu like symptoms/feeling of being poisoned. My pem is also a combination of immediate and delayed.

EDIT : apologies, writing this when too exhausted to do it well. My above comment was intended as a reply to your previous post saying severely affected may not get pem as many experience it as even walking for bathroom can be too much. I accidentally wrote this post under your subsequent comment.

I will say pem if one hugely extends can trigger permanent deterioration as the person commented. After it the disease may have descended further but the exertion, physical, mental or emotional, can be the direct cause of the permanent deterioration. For example, I did a short walk 8 years ago that caused a deterioration that 8 years on I still have not recovered from. Finally, at the lower level of functioning, pem will happen again, and if extend too much, most are careful to not extend too much, further permanent deterioration.

 

i hope this is not redundant, but given these things, and various things like orthostatic intolerance, looming, and poor sleep [produces identical symptoms in my case], are we still going to use the word exertion?

it's possible the many misperceptions could be reinforced by focusing only on exertion. even montoya's "toolkit" focused on exertion.

maybe "overload"? "dysequilibrium"? just brainstorming.

 

Good to see.

Thanks to @Leonard Jason for all of his work engaging with patients on this, and many other things, over the years.

 

That's a good offer. It could be interesting to engage with and contribute to?

 

Yes, but I thought we'd tried, others much more than I, to come up with a definition as to what constitute different aspects of PEM and failed? I can't even remember most of my own PEM without triggers, let alone come up with a more general definition, broad strokes maybe, but specifics not so much.

 

@Wonko I think he's talking about developing a new questionnaire, or instrument, as he puts it, that would give a way of screening patients specifically for the presence or absence of PEM,

So I think he's suggesting that if the patient community want to develop an operational test specifically for PEM, ie a kind of diagnostic instrument in questionnaire form, and give an idea of what score would, in our opinion, confirm the presence of PEM as a symptom, then he'll do the research needed to assess it/(in)validate it against his DSQ measure.

 

Surely before you can come up with a questionnaire you need to define what you are looking for? Or how would you know what questions to ask and what there relevance was?

 

I agree that brain fog makes thinking anything tricky, but I guess the point is that we, the patients, live with this symptom, and so we're well placed to say how it should be decided upon, or assessed.

It may not be something everyone is able to get involved with, depending on (remaining!) cognitive function, but once a questionnaire was developed, perhaps anyone could have a go at answering it, to help in figuring out how the scoring should be done, and where the threshold for confirmation of PEM should be set.

 

I think the threads we have on this show it could be done.

In isolation it is very hard to remember all of the symptoms and triggers, but once someone else mentions it you remember. You add your tuppence worth and somebody else qualifies it. Triggering a new memory from yet another pwME...

I think, in the discussions we have had so far we, there is a huge amount of information about PEM. It certainly highlighted how complex it is and a high level of skill is needed tease out all the info. Many, many variables.

I think collaboration is essential with this. We certainly need better than the CFQ!

 

Sorry - could you remind me what the CFQ is? It may be because my memory loss includes abbreviations, names, etc...Cognitive fatigue questionnaire?

 

Chalder Fatigue Questionnaire

 

Ah - thank you!