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

The IOM description resonates with me. In addition I think we need to add some of the objective signs of PEM. Such as PEM shows up in a reduced (or if really over exerted an increased) morning resting heart rate compared to average morning resting heart rate the next day. Along with a much more reactive HR - much spikier up and down. Also that extreme PEM can last years from inordinately tiny events/exposures to triggers. Also the IOM description fails to mention other triggers other than physical or cognitive exertions that can cause PEM e.g. food/chemicals/ noise/light, good and/or bad emotional events.

 

Yes - our challenge is to avoid PEM at all costs so much so that we hope to score zero on frequency and zero on severity. This really leads back to the need for our physiological abnormalities to be measured. It would be far more useful to know how much time we spent over our anaerobic threshold and how much time at resting heart rate zone over the time when talking about symptoms or what is the maximum that you can safely do before triggering PEM .

 

?? but there is not a hard physical ceiling. It appears that PEM fluctuates in relation to cumulative load and the triggering event. The impact changes over time. I think it would be good to devise a series of PEM tests for people doing the same task and both a between people and individual tests. My gut feeling is that disease severity and PEM is reflected in HR traces and certainly very easy to tell from a normal HR trace.

 

Yep an emotional drama sets off IBS for me. It is odd but I have a different symptom exacerbation pattern for different triggering events. Chemicals and food lead to a "coma" wiped out sleep. Exercise to a sore throat, headache, glands. Cognitive - tinnitis...Eventually if I don;t rest the symptoms become a big PEM mess but the initial warning signals are quite distinct.

 

I don't like the word bothered- my life has ended and I am devastated NOT bothered.

 

The idea that PEM lasts a few days or weeks is at odds with some peoples reality of months/years/decades/may be never able to get back to pre trigger functional capacity.

 

Don't all patients experience PEM if they over exert and/or are exposed to triggers.

 

Me too- I get little warning signs now that I am tuned into my body with PEM hitting like a truck on day 3 if I ignore Day 1's warning signs. On Day 2 I can feel on top of the world and wired to do anything. Now that I am HR monitoring I can see that my HR and HRV data are usually bad on day 2 indicating the need to rest up to avoid PEM.
My concern is that the definition is to be used for research yet doesn't ask about our objective markers which many of us have data on and would made a good part 2 to the definition. Educating Dr/patients and researchers about the power of using objective HR data.

 

I like the term exertion as to me it means anything that is not resting and it includes physical and cognitive - the other triggers need to be included as well.

 

A definition can be multi faceted. I see heart rate data as a second tier of information and not the primary definition but for people pacing and controlling their environment as much as possible heart rate abnormality patterns caused by exertion/triggers appear to be distinctive. The heart rate medications appear to reduce the HR but the PEM patterns are still being observed. I think we need to keep hammering home the fact that the effects of PEM can be measured, monitored and quantified. I'd suggest that those people with highly variable morning resting heart rates are either not taking it consistently ie say as soon as wake up or after going to the toilet each morning OR they are doing a whole range of things day in day out and neither ordinary pacing nor pacing with a heart rate monitor.

 

Thanks for setting this up, @Simon M. Will there also be a written submission collating the nuances of this discussion to feedback to NIH/CDC?

 

I'm a bit confused as teh questionaire didn't ahve NAM which i wouldl have choosen over IOM.

 

Is there published evidence for that, Alice? I vaguely remember Nancy Klimas saying that if your morning HR is high you should be more careful that day but I didn't know she'd published on it.

 

The De Paul questionnaire is inadequate to describe the symptoms of PEM. It fails to capture the extraordinary nature of PEM and misses out on essential aspects. Eg, asking about frequency of symptoms is irrelevant and misleading. PEM, as the name suggests, does not arrive on schedule but is contingent on activity. ‘Fatigue’ should also be avoided as it minimises PEM. There is a ceiling effect, excluding the counting of minor activities which can trigger PEM.

The NAM questions are relevant but cover only some aspects.

A longer and more precise set of questions need to be asked in order to reflect the essential importance of the symptom. If patients can relate to the questions, it should be worth it. Here are some suggestions:

1. The SF-36 scale should be adapted (if possible, considering copyright issues). Or a similar questionnaire may need to be constructed. Re each of the activities in the SF- 36 scale, ask, How often can you do each of these activities without feeling worse afterward? Every day, Once or twice a week, Every month, Less than once a month, Never. The list of activities should be refined to include even finer movements to allow for the more severely affected.

2. Symptoms should be spelt out in more detail with degree of symptoms, if only to show the abnormality of them occurring after activity.

Eg Which of these symptoms do you experience after more activity than usual, and what is their impact?

For each symptom, Not at all, Same as usual, A bit worse than usual, A lot worse than usual.

Symptoms, heaviness, weakness, sleepy feeling, loss of co-ordination, difficulty thinking/concentrating, Making simple mistakes, tingling or pricking in some body parts, muscle twitching, muscle pain, joints feel weak/loose/painful, sore throat, flu-like symptoms, headache, difficulty standing, dizziness, breathlessness, difficulty breathing, irregular heartbeat etc. (This list is biased toward my symptoms)

Does your heart-rate increase or decrease after activity? Does this change last longer than usual? How long does it last?

3. How long do your post activity symptoms last? Hours, days, weeks, longer?

4. Do your symptoms start immediately after or during activity or are they delayed?

5. How long have you had these symptoms worsening after activity/ exercise?

6. Have your symptoms after activity got better, worse or stayed much the same over time?

These symptoms should be correlated with length, severity and progress of illness.

On the basis of these questions, an index of PEM severity could be produced by those more mathematically sophisticated than I am. Subgroups based on the type of PEM experienced could be tested for.

These are some preliminary suggestions.

 

As a trigger for PEM we also need to consider adding sensory overload. This can arise from social interaction, sound sight exposure to chemicals which are involved.