Is NIH/CDC going to use the right PEM definition for all future research? Action needed?

[andyguitar]

Good stuff people . Go for it. I know how easy it is to distrust organisations like NIH/CDC and see their invitation for submissions to just be a public relations exercise, but there are people in what in the UK we call 'Public Service' who are totally commited to doing a good job. To bring about social and political change you dont need a lot of money, political influence or a PhD. Good ideas, a clear objective and a good grasp of the subject are what you need. Plenty of that among members here.

 

[Nielk]

This is copied from the CDE PEM document.

For the following questions, we would like to know how often you have had each symptom and how much each symptom has bothered you over the last 6 months. For each symptom please circle one number for frequency and one number for severity. Please fill the chart out from left to right.

Symptom Frequency Throughout the past 6 months, how often have you had this symptom? For each symptom listed below, circle a number from: 0 = none of the time 1 = a little of the time 2 = about half the time 3 = most of the time 4 = all of the time

Severity Throughout the past 6 months, how much has this symptom bothered you? For each symptom listed below, circle a number from: 0 = symptom not present 1 = mild 2 = moderate 3 = severe 4 = very severe

1. Dead, heavy feeling after starting to exercise


0 1 2 3 4 0 1 2 3 4

2. Next day soreness or fatigue after nonstrenuous, everyday activities


0 1 2 3 4 0 1 2 3 4

3. Mentally tired after the slightest effort


0 1 2 3 4 0 1 2 3 4

4. Minimum exercise makes you physically tired


0 1 2 3 4 0 1 2 3 4

5. Physically drained or sick after mild activity


0 1 2 3 4 0 1 2 3 4

and then

Scoring algorithm: A frequency of at least 2 and a severity of at least 2 on any one of the 5 questions on the DSQ PEM subscale indicates that PEM is present

So that if a person answers that "minimum exercise makes you physically tired" moderately about half of the time - the researchers will consider that this person fulfills the symptom of PEM.

 

[Learner1]

So that if a person answers that "minimum exercise makes you physically tired" moderately about half of the time - the researchers will consider that this person fulfills the symptom of PEM.

I function at about 65-70% of normal.

I do exercise carefully and it makes me tired, and I definitely get PEM, but if I answered those questions, I'm pretty sure I wouldn't qualify.

But, I do think researchers could learn something by studying me, and people like me, and not just people who can't tolerate exercise at all.

 

[andyguitar]

Looks like they will miss those who are in the process of making a full recovery then.

 

[Learner1]

I've never seen any statistics, but I'd guess that the number of patients with "mild" ME/CFS (which is still pretty disabling) are more numerous than moderate or severe. I'm thinking of the Bell curve, moving away from normal... more people toward the fat part...

So it would seem that studying milder cases and finding answers would benefit the most patients.

With that said, its also important to be able to study patients of all levels of functionality from severely impacted to milder cases.

In my input, I suggested a new questionnaire that would bring out the differences do that researchers could select patients from different points along the spectrum, which would result in more learning about the nuances of PEM.

 

[Nielk]

These CDEs are to be used for all federally funded research which includes all the upcoming studies for the three research consortia in the US.

If they include people who do not suffer from PEM, what disease will they be studying? If you do not suffer from PEM, call yourself very lucky and you either never suffered from ME or you are in remission or cured.

Since there are no accepted biomarkers as of this date, it is of utmost experience to select people who suffer from the hallmark symptoms - PEM being an important one.

I would guess that a large part of the population suffers from some type of constant fatigue and insomnia. People who suffer from sleep apnea, allergies, depression, anemia, anxiety, some autoimmune diseases and some cardiac patients would all qualify to be included under these CDEs.

 

[Learner1]

I DO suffer from PEM. It is incapacitating when it happens and lasts days.

But, I don't get it when starting exercise, exercising slightly, or using the slightest mental energy. It takes more effort than that to provoke it, less than the effort a normal person puts out with normal activity.

Just because its not as easily provoked, severe, or frequent as someone who functions at 30% or less, doesn't mean its not valuable.

It might be quite illuminating to find what's happening when someone who is functioning at 70% gets it, which provokes a downward slide. What can we learn about the metabolomics of that? What treatments can we try? What tips someone into it or out of it?

 

[boolybooly]

I find that it varies and sometimes in more severe patches the DSQ questions apply well but at other times, what I consider better times, the IoM questions would be more revealing.

In more severe patches I feel lower and any activity is troublesome from the get go and the PEM is immediate. It is easier to self monitor though as the symptoms are so evident. This is when DSQ would be more relevant.

In better patches I feel less low and able to try light activity up to about 10% of normal but still get very quickly tired and the PEM affects accumulate over three to five days, take longer to impact up to 24 hours and last three to five days or more. That is how long I have to rest to get back to baseline for accumulated PEM. Then the IoM questions would reveal the PEM which might be obscured in a short term analysis.

My ME is chronic but these phases appear cyclical as are episodes of viral recurrence and I believe intensity of immune activity is what makes the difference between the two types of phase.

For this reason I think the answer is both are useful, with an awareness that they discover different modes of PEM.