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

I've found that I can enjoy and feel good after exercise despite the fact that I will suffer PEM later in fact the more I overdo it the more enjoyable it is at the time. Doing my CPET test was marvellous. The 7 month severe crash afterwards was not. PEM can last YEARS/DECADES.

 

Me too. I feel great while I'm overdoing it. I have no idea until later (apart from prior experience) that I've gone beyond my limit.

 

Sometimes yes, sometimes no.

For me there are phases to this condition that are separate to PEM. There a good phase (a rare thing now). When it seems quite stable and I can enjoy small yoga type exercise & very gentle walks.

There is the downward phase where no matter what I do my condition and overall function drops off.

There is the bad phase.

Then (hopefully) the improving phase - where if I'm careful and avoid becoming breathless I can exercise a little. With great caution.

Depends on the phase.

 

Yes, I meant that our functional capacity has a real, irremovable, lowered ceiling, depending on level of severity, not that PEM itself is fixed.

 

Defining PEM is easy but measuring it subjectively and its frequency can be meaningless and fraught with misinterpretation. The NAM description seems accurate and it and the IOM description don't get bogged down in symptom lists. The key to a PEM definition in my opinion is its overall characteristics and the potential triggers. The NAM and IOM fail to identify all the triggers...= that exacerbate the symptoms e.g. major intolerances to chemicals, foods, light noise, vibration, sensory overload etc these triggers can be much harder to identify and control than physical/cognitive exertion and lead to the view that PEM is random and/or unavoidable. Jason, Klimas etc all state that the more severe patients often have less symptoms. Obviously not because they are healthier but because they have learnt to avoid PEM triggers severe end of the spectrum are missing from ALL existing diagnostic criteria so far. PEM shows up on heart rate traces it can be objectively seen and measured by patients. A descriptor for PEM is all we have right now but maybe the real work needs to be done on validating/measuring/comparing the changes in the HR traces of people in and out of PEM? Maybe bedridden/housebound people are the best to use or maybe the bedridden/housebound people are different but certainly in this group the orthostatic variation in HR is markedly greater on a PEM day as is the heart rate variation (spikiness of the HR trace) throughout the day. The NICE Guideline may need to suggest things that might help/patterns that some patients have reported that others may use. The Royal College boffins will turn to the published papers by their mates and meta analyse them yet again ignoring that garbage in = garbage our. We need to be creative about how we want our perspective to be included when the patient story has been ignored and we don't have research to back us. Our experiences can still be included under headings such as patient findings yet to be tested by research....expansion of the heart rate pacing section of NICE.

 

Is it? I can't. I experience it, more frequently than I'd like, I remember bits, but only bits, of it. Through reading others experiences I recognise and through this recognition temporarily remember forgotten bits of my own PEM.

But a complete definition, that's beyond me.

I assume the difference between people who think they can define it is down to the relative level of cognitive issues experienced, but as these, at least for me, are also part of PEM, how can someone who doesn't have this level of cognitive impingement come up with a complete definition of PEM, and if they do, like me, they can't.

It's not easy.

Or other words that mean something more sensible.

 

Except that at the very severe end of the spectrum, avoiding triggers is simply impossible, by virtue of still being alive. For example, noise, light, being moved by others (for washing, bed sheet changing etc), and other things one cannot eliminate are enough to cause PEM at that level.

 

I haven't read this whole thread yet (I probably should) but this is the comment I added to the questionnaire:


Jane Colby suggests "Post Exertional Deterioration" instead of "malaise".

I like this idea, as "malaise" is a word that suggests something fairly minor. "Deterioration" on the other hand, does not seem like a minor issue.

When I was most ill, small exertions led to a deterioration that did not allow me to return to the same level of functioning as before. Each error of judgement (where I did just a tiny bit above my incredibly low threshold) caused a further lowering of my long term capacity.

In truth, after recovering from the immediate dip in ability, I lost only small fraction of my total well-being each time, but the overall effect of these minor "over exertions" was a ratcheting downwards of my health over several years.

Naturally, I became very cautious about exertion or stimulation of any kind, and never pushed on to the point where I was "tired". Yet still I couldn't quite control the downward descent.

For this reason I very much dislike the word "fatigue" - in truth I rarely could feel properly tired. I couldn't do enough to feel that genuine tiredness, because doing so would cause the dreaded post exertional deterioration, and so I always had to curtail my activities before I got to the point of tiredness.

I think every exertion assessment should properly assess three things:
The immediate effects as exertion happens
The delayed effects in the days afterwards
The long term outcome of the exertion incident.

Note: Fortunately I have since improved after a drug treatment. And, I've had no problem taking up the additional capacity that my improved health has now offered me. (No GET required!)

Unfortunately, I now have a new exertion threshold, and I am still careful not to challenge it. I really don't want to start loosing functioning as I did before. Meh.

No need to reply to this.
Sally

 

Yes, Kitty, I agree we need a more expanded list. After all, research is to be based on this.

 

The danger is we start defining PEM as “whatever it is that separates us from every other diseases” rather than focusing on what are the common experiences of patients with this illness in response to exertion. The fact that the " spoonie" idea is so popular suggests our issue may not be unique. I think it genuinely needs more work to explore that, but that shouldn’t stop us making sure that the N I H/CDC define our experience accurately.[/QUOTE][/QUOTE]
If we demonstrate our common experience in sufficient detail this should help to delineate unique features of the disease.

 

Thank you, Leonard. Like Trish, I have a big problem with use of the 'fatigue' word especially as a habit is creeping in in various papers diluting PEM to post -exertional 'fatigue'.
My other concern is the use of frequency of symptoms in PEM. They do not occur in terms of frequency but as a result of activity. I cannot answer this question with any accuracy. As others have stated, they might hardly ever get PEM because they confine their activities appropriately, but if they exceeded their level frequently they might get PEM quite often. So, it would be more accurate to ask what level of activity triggers off PEM.

 

May be we can avoid the problem of fewer symptoms because excessive activity is avoided, by asking how much a patient can do before they get PEM. ie, a modified SF-36 type scale. This would show the amount of activity limitation they experience in order to limit symptoms.

 

I agree. The scale should be able to show, 'these patients don't get much PEM, but how much activity do they sacrifice for this?

 

Not for me. I have a really hard time defining PEM with words.

A lot of the detailed PEM descriptions post on this thread are very hard for me to read and absorb so I hope no one here thinks I'm ignoring posts on this thread. I did read this thread and tried to understand what has been posted so far. I think this might be duplicating some of what has been posted already, but some of it may be new, so I'm posting it.

I can recognize PEM when I get it. And I can give a general description. But I don't think I could ever come up with a definition, a clear list of symptoms that would fit all ME patients (or even majority of patients).

Mostly that's on me - brain fog! But I also think creating a PEM definition is difficult thing for anyone to do.

I don't know if this helps at all with creating a definition or questionnaire but for me this point is important. For ME patients who used to do exercise the PEM experience feels completely different from the normal soreness or achiness of overdoing it when your body is normal.

So many doctors seem to think PEM is an extreme version of normal exhaustion after over-exertion. But it's not. At least, not for me.

For me, PEM is a different kind of feeling. As I posted on another thread once, I never got symptoms like dizziness, nausea, fasciculations (tiny muscle twitches), headache, breathlessness (not during the exertion, the next day or two, after the PEM hits), etc. Even after doing serious exertion, such as climbing to the summit of Mount Hood, these kind of weird symptoms never hit me.

And these days I never get any normal muscle soreness (I actually kind of miss that feeling). When I do get muscle aching it's a different sort of ache, an ache that feels more like a tetanus shot or a typhoid shot. But that kind of weird muscle ache is different from the normal kind of soreness/ache that happened to me after increasing the difficulty in my weight lifting routine, or hiking a longer/steeper route, or anything like that.

Anyone who has lifted weights and gotten a shot can easily agree that those are two different kinds of muscle pain, right? (I hope? Maybe it's just me?)

Just some rambling thoughts in case they are helpful.

 

That's something I can confirm. Of course, when training you overdo it on a regular basis. Afterwards, I felt exhausted but happy. It was a satisfying exhaustion. I didn't feel energy-less though, I felt alive. I had muscle achiness and did easy training after a hard unit with no problems at all; it felt good.

Today, if I overdo it, I feel like crap; no happiness or liveliness at all, the absolute contrary. I feel like there's no energy. Cognitive symptoms increase, I might have headaches, too. The sleep is worse. Even the muscle ache feels different - it's more intensive; the muscles feel stale and weak, and even easy usage wouldn't be good. I might have joint pain.
It's very hard to explain.

 

Yep. Me too. I used to exercise regularly, it was a great way of destressing from my job. If I stopped for a few weeks and had to restart it was very hard to get back in to it, stiff, achy muscles but it was NOTHING like PEM. PEM is like nothing I experienced before I became ill.

In fact when I was a schoolgirl we used to do 24 hour sports marathons to raise cash for school trips or charity etc. You'd play for 45 mins and then have 45 mins off throughout. Then you get to 2 or 3 am and there was no shifting some lazy beggars out of their sleeping bags. Being one of the fitter people with quite good stamina, I was one of the ones who would play on. Even a 24 hour marathon wouldn't trigger the kind of symptoms I get with PEM.

Post exertional deterioration - yeah. That's the best name for it yet.

 

I would like to provide some more information to the larger community about recent work we have done on the DSQ. Over the last 2 years, our group has published several articles on PEM, and we had collected data from 704 patients in an international convenience sample of adult patients self-identifying as having ME or CFS. Our results suggest that post-exertional malaise is composed of two empirically different experiences, one for generalized fatigue and one for muscle-specific fatigue in these findings are in the following publication (you can find this article on ResearhGate under my name): McManimen, S. L., Sunnquist, M. L., & Jason, L. A. (in press). Deconstructing post-exertional malaise: An exploratory factor analysis. Journal of Health Psychology, 1-11. Published online August 25, 2016. doi: 10.1177/1359105316664139

In data that is still not published, we also found that the item that was liked by the highest percentage of patients (89%) was from the Ramsay criteria (Prolonged worsening of symptoms after physical activity; and two Ramsay items were: Muscle fatigability after minor exertion, and muscle weakness after minor exertion). In addition, the second highest rating (88%) was for symptoms worsen with exertion, an item from the ME-ICC. In part, because of these findings, our second version of the DSQ that we have been using over the past year has included the following three PEM items: Muscle fatigue after mild physical activity, worsening of symptoms after mild physical activity, and worsening of symptoms after mild mental activity.

As is evident, our first version of the DSQ was modified in this PEM area and in other areas based on patient input, and we are grateful for constantly trying to improve our instruments based on feedback from the larger patient community. We are now working on projects to validate the PEM score with a number of physiological measures.

Our group has tried to operationalize the criteria that the CDE has proposed for PEM, and we needed 30 questions to measure this construct. The Questionnaire that we developed is at the end of this email. And as is evident, specifying domains of importance is only a first step, and it is critical to designate explicit ways to measure the symptom and then how to score it for whether it meets the criterion being assessed.


Here's the draft definition of PEM that a Common Date Elements group is now working on.

PEM is defined as an abnormal response to minimal amounts of physical or cognitive exertion that is characterized by:

1. Exacerbation of some or all of an individual study participant's ME/CFS symptoms. Symptoms exacerbated can include physical fatigue, cognitive fatigue, problems thinking (e.g. slowed information processing speed, memory, concentration), unrefreshing sleep, muscle pain, joint pain, headaches, weakness/instability, light-headedness, flu-like symptoms, sore throat, nausea, and other symptoms. Study participants can experience new or non-typical symptoms as well as exacerbation of their more typical symptoms.

2. Loss of stamina and/or functional capacity

3. An onset that can be immediate or delayed after the exertional stimulus by hours or days but the exact timing is not well understood.

4. A prolonged, unpredictable recovery period that may last days, weeks, or even months.

5. Severity and duration of symptoms that is often out-of-proportion to the type, intensity, frequency, and/or duration of the exertion. For some study participants, even basic activities of daily living like toileting, bathing, dressing, communicating, and reading can trigger PEM.

Some other precipitants of PEM that have been identified include positional changes and emotional stress. In some instances, the specific precipitant cannot be identified. The threshold for a precipitant to trigger PEM can vary between individuals as well as within the same individual, at different times during their illness.

------------------------------------------------------------------------------------------------------------------------------

Here is what would need to occur to operationalize these criteria, and it is still a bit uncertain what scores would be needed to designate that a person had PEM. Therefore data would need to be collected to answer this important question.

Post Exertional Malaise Questionnaire


1.Do you experience an abnormal response to minimal amounts of physical exertion?

Yes____ No_____


2. Do you experience an abnormal response to minimal amounts of cognitive exertion?

Yes____ No_____


If you experience this abnormal response to physical or cognitive exertion, which symptoms below are made worse:


3.Physical fatigue: Yes____ No_____


4.Cognitive fatigue: Yes____ No_____


5.Problems thinking (e.g. slowed information processing speed, memory, concentration):

Yes____ No_____


6.Unrefreshing sleep: Yes____ No_____


7.Muscle pain: Yes____ No_____


8.Joint pain: Yes____ No_____


9.Headaches: Yes____ No_____


10.Weakness/instability: Yes____ No_____


11.Light-headedness: Yes____ No_____


12.Flu-like symptoms: Yes____ No_____


13.Sore throats: Yes____ No_____


14.Nausea: Yes____ No_____

15.Loss of stamina and/or functional capacity: Yes____ No_____

16.Other symptoms please specify: ____________________

17.The onset of your abnormal response to physical or cognitive exertion is immediate after the exertion: Yes____ No_____

18.The onset of your abnormal response to physical or cognitive exertion is delayed after the exertion: Yes____ No_____

19. If your onset is delayed, your abnormal response to physical or cognitive exertion is delayed after the exertion by (check one box below):

 1 hour or less

 2-3 Hrs

 4-10 Hrs

 11-13 Hrs

 14-23 Hrs

 More than 24 Hrs (Please specify__________)



20.Your prolonged, unpredictable recovery period from abnormal response to physical or cognitive exertion may last days, weeks, or even months.

Yes____ No_____


21. If yes, your prolonged, unpredictable recovery period that may last (check one box below):

 Within 24 hours

 Over 1 week

 Over 1 month

 Over 2-6 months

 Over 7-12 months

 Over 1-2 years

22.The severity and duration of your abnormal response to physical or cognitive exertion symptoms is often out-of-proportion to the type of the exertion. Yes____ No_____


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_____


24.The severity and duration of your abnormal response to physical or cognitive exertion symptoms is often out-of-proportion to the frequency of the exertion. Yes____ No_____


25.The severity and duration of your abnormal response to physical or cognitive exertion symptoms is often out-of-proportion to the duration of the exertion. Yes____ No_____


26. Do basic activities of daily living like toileting, bathing, dressing, communicating, and reading trigger your abnormal response to physical or cognitive exertion? Yes____ No_____


27. Precipitants of your abnormal response to physical or cognitive exertion include positional changes (e.g., your body position is shifted from the standing to lying down). Yes____ No_____


28. Precipitants of your abnormal response to physical or cognitive exertion include emotional stress. Yes____ No_____


29.In some instances, the specific precipitant of your abnormal response to physical or cognitive exertion cannot be identified. Yes____ No_____


30. The threshold for a precipitant to trigger your abnormal response to physical or cognitive exertion varies as it occurs at different times during your illness. Yes____ No_____

 

Enviromental factors: heat, sensory stimulation (noise, lots of fast moving visual info such as travelling in a car) are also common triggers. In my own case environmental factors are far more likely to trigger PEM than emotional one, but that may not be true for others.