Open DSQ PEM survey - DePaul University, open October 2025

Trish

Trish

Moderator
Staff member
Copy of Facebook post by Leonard Jason:

From the DePaul Group:

Are you 18 or older? Do you experience Post-Exertional Malaise? Or are you a member of the general population interested in contributing to research?

We are conducting a brief online survey as part of a research study focused on Post-Exertional Malaise (PEM). Your responses will help us evaluate the validity and reliability of a new survey tool designed to assess PEM symptoms.

The survey takes approximately 10-15 minutes to complete. Participation is entirely voluntary and anonymous. Additional information is provided on the first page of the survey.

You can access the survey here:
DSQPEM2.COM
DSQ-PEM 2 Survey - DePaul University
 

CONSENT FORM AND AUTHORIZATION FOR RESEARCH​

Title: The DePaul Symptom Questionnaire – Post-Exertional Malaise 2 (DSQ-PEM 2)​

Principal Investigator: Kelly Chee, B.S.
Faculty Sponsor: Leonard Jason, Ph.D.

Key Information​

What is the purpose of this research?

You are being asked to participate in a research study designed to evaluate the reliability and validity of a new survey instrument that measures Post-Exertional Malaise (PEM)—a key symptom experienced by people with Myalgic Encephalomyelitis (ME). PEM involves a worsening of symptoms after physical, cognitive, or emotional exertion. This study is being conducted by Kelly Chee, B.S., under the supervision of Dr. Leonard Jason at DePaul University.

Why are you being asked to be in this research?

You are eligible to participate if you:

  • Are at least 18 years old,
  • Speak and read English fluently
What is involved in being in the research study?

If you agree to take part, you will complete a one-time, anonymous online survey. The survey will take approximately 10–15 minutes to complete and will include questions about:

  • General demographic information (e.g., age, gender, health condition status),
  • Symptoms you may have experienced (including PEM).
Participation is voluntary, and you are free to exit the survey at any time.

Other Important Information about Research Participation​

Are there any risks involved in participating?

This is a minimal-risk study. Some questions may be tiring or cause slight discomfort if they remind you of unpleasant symptoms. You may stop participating at any time. All data will be anonymous—no names or identifying information will be collected.

Are there any benefits to participating?

There may be no direct benefit to you. However, your participation may help improve tools for identifying and understanding PEM in people with ME/CFS and Long Covid, which could aid in future clinical and research efforts.

How much time will this take?

Participation should take 10–15 minutes total.

Will I be paid for participating?

There is no compensation for participation in this study.

Will it cost me anything to participate?

There are no costs associated with participating.

Can I choose not to participate or stop at any time?

Yes. Your participation is completely voluntary. You may exit the survey at any point without penalty or loss of benefits.

Confidentiality and Use of Your Information

All survey responses are anonymous and will be stored securely in a password-protected database. No identifying information will be collected. Survey data will be coded and analyzed only in aggregate. The results may be published or presented at conferences, but you will not be identifiable in any reports.

Although confidentiality is maintained, please note that DePaul University's IRB or other regulatory agencies may inspect the study records to ensure compliance with approved procedures. These parties are also required to maintain confidentiality.

Who should be contacted for more information?

If you have questions about this research, you may contact:

If you have questions about your rights as a research participant or wish to report a concern, contact:

  • Lauren Miller – Interim Director of Research Compliance, DePaul University
    Phone: 312-362-7595 | Email: lmille74@depaul.edu
  • DePaul Office of Research Services
    Phone: 312-362-7388 | Email: orp@depaul.edu
Please confirm your eligibility and consent:
I am at least 18 years old
I am not yet 18 years old
I understand English
I do not understand English
By checking the box below, you indicate that:
  • You are 18 years of age or older
  • You understand English
  • You have read and understood the above information
  • You voluntarily agree to participate in this research study
Yes, I agree to participate
No, I do not agree to participate
Click to expand...
 
Question 2 of 43
1. Over the past 6 months, have you experienced post-exertional malaise, which is defined as an abnormal response to minimal amounts of physical and/or cognitive exertion, with symptom severity and duration out of proportion to the initial trigger?
Yes
No
2. What were some of your triggers for post-exertional malaise? (select all that apply)
Minimal amounts of physical and/or cognitive exertion
Basic activities of daily living like going to the toilet, bathing, dressing, communicating, and/or reading
Positional changes (e.g., your body position is shifted from lying down to standing)
Emotional stress (good or bad)
Chemicals
Foods
Light
Heat
Cold
Noise
Visual overload
Watching movement (such as a video)
Sensory overload
Mold
3. How long does your post-exertional malaise symptoms typically last?
I do not experience post-exertional malaise
< 1 hour
1 - 12 hours
13 - 24 hours
25 - 48 hours
2 days - 1 week
1 week - 1 month
Greater than 1 month
4. Are your typical post-exertional malaise symptoms delayed in onset?
I do not experience post-exertional malaise
No delay in symptom onset
1 hour or less delay
2 - 23-hour delay
1 - 2 days delay
3 days or longer delay
5. Some individuals are able to reduce or avoid post-exertional malaise by pacing, identifying warning signs, or decreasing, breaking up, and rescheduling activities based on available energy levels. How effective are strategies like these in avoiding or reducing post-exertional malaise?
Because of these types of strategies, I no longer experience post-exertional malaise
These types of strategies are moderately effective
These types of strategies are mildly effective
These types of strategies are barely effective
These types of strategies are not effective
I do not need to use these strategies as I do not have post-exertional malaise
Question 7 of 43
You will now be presented a series of symptoms. For each one please rate how often (frequency) and how intensely (severity) you have experienced this symptom over the past 6 months.

There follows a series of symptoms, for each you are asked to answer the following 2 questions:


Frequency: Throughout the past 6 months, how often have you had this symptom due to post-exertional malaise?
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, when this symptom is present, how severe is it?​

0
Not present
1
Mild
2
Moderate
3
Severe
4
Very severe

The symptoms listed for which you have to answer the above 2 questions are:
Reduced stamina and/or functional capacity
Physically fatigued while mentally wired
Cognitive exhaustion
Problems thinking
Unrefreshing sleep
Insomnia
Muscle pain
Muscle weakness/instability
Aches all over your body
Dizziness
Flu-like symptoms
Temperature dysregulation
Physical fatigue
 
Question 21 of 43
You will now be presented with a series of Post-Exertional Malaise case definitions. For each one please rate how often (frequency) and how intensely (severity) you have experienced this symptom over the past 6 months.

For each, you are asked these 2 questions:

Frequency: Throughout the past 6 months, how often have you had this symptom?​

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, when this symptom is present, how severe is it?​

0
Not present
1
Mild
2
Moderate
3
Severe
4
Very severe

Symptoms for which you are asked to answer the above 2 questions:

Next day soreness or fatigue after non-strenuous, everyday activities
Mentally tired after the slightest effort
Physically drained or sick after mild activity
Dead, heavy feeling after starting to exercise
You can interpret the word exercise as any daily activity you do such as even walking around in your house.
Minimum exercise makes you physically tired
You can interpret the word exercise as any daily activity you do such as even walking around in your house.

Question 27 of 43
Since the onset of your problems with fatigue/energy, have your symptoms caused a 50% or greater reduction in your activity level?
Yes
No
Not having a problem with fatigue/energy

Question 28 of 43
What is your age?
What is your gender?
Male
Female
Other
Prefer not to answer

To which of the following race(s) do you belong? (Check all that apply)
Black/African American
White/Caucasian
American Indian or Alaska Native
Asian or Pacific Islander
Other race (Please specify):
Are you of Latino or Hispanic origin?
Yes
No
Do you currently live in the United States?
Yes
No
If you do not live in the United States, what country do you currently live in?
What is your current marital status?
What is the highest degree or level of education you have completed?
What is your current work status? (Check all that apply)
What have you been diagnosed with? (Check all that apply)
Chronic Fatigue Syndrome (CFS)
Myalgic Encephalomyelitis (ME)
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
Long COVID
Other (please specify):

If you have a diagnosis, what year were you diagnosed?
What age were you when you were diagnosed?

Who diagnosed you?
Medical Doctor
Alternative Practitioner
Self-Diagnosed

Question 40 of 43
If you were diagnosed by a medical doctor, was s/he an expert/knowledgeable of ME or CFS?
Yes
No
Not applicable

How accurately do you feel this questionnaire was able to capture your experience of post-exertional malaise?

Very Accurate
Accurate
Neutral
Not Accurate
Not at all Accurate
I do not experience post-exertional malaise

Question 42 of 43
If you would like, please use this space to share any additional thoughts on your experience with post-exertional malaise or this survey:
 
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My concept of PEM differs from that of the authors and the questionnaires leave no room to express what PEM is like for me.

Question 5 is about how effective pacing is for reducing PEM. The answer is it depends on how much one's life circumstances allow one to implement pacing and how disciplined I am. Pacing is just avoidance of the things that trigger PEM.

Also my PEM doesn't have boundaries that are always clearly defined. There can be well distinguishable shifts in symptoms that occur predictably in response to increased activities. There can also be a cumulative low-grade PEM from doing a little bit too much for days or weeks, and this isn't as well defined. Mostly I notice that it has been there when it gets too much and I finally get more rest, and can feel the difference.
 
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I would encourage people to do the survey an give and honest response about whether you think they have defined and captured your experience of PEM accurately in the final question. I wrote a quick response and will put it in a spoiler so I don't influence what others write unless you want to read my comments first.


Your definition in question 1 conflates the symptoms of ME/CFS where all exertion leads to increases in symptoms and reduction in function, with PEM which needs to be specified as the separate phenomenon of episodes of much worse symptoms which may include additional symptoms and a further decrease in already reduced function. The episodes being usually delayed by 1 to 3 days and lasting at least a day, usually longer.

The questions from then on make no sense to me, as I experience most of the symptoms asked about all the time, and they worsen my symptoms every time, but that's not PEM, that's the daily grind of ME/CFS. So do I pretend they only occur during identifiable episodes where they are much worse because I have PEM, or do I answer, all the time? You give no way of distinguising between those symptoms experienced all the time, and those that only occur during PEM episodes.

There is also the problem of 'how long is a piece of string' for all the questions about severity. You need to give benchmarks for what you mean by mild, moderate, severe or very severe.
You also need to ask about the person's overall ME/CFS severity level, as the answers from someone with mild ME/CFS will make no sense alongside the symptoms of very severe ME/cFS.

I suggest you change the questions to ask whether each is experienced all the time, and whether there are episodes when they become much more severe. How else are you going to capture whether someone experiences PEM episodes, or simply feels generally unwell a lot of the time.

See this fact sheet on PEM and the definitions of PEM by NICE and the CDC.
 
I copied the questions onto this thread because I wanted to be able to come back to them to think about and discuss them. The more I look at them, the less sense they make. Is it just me, or has Leonard Jason's team once again completely misrepresented what PEM is?

The first set of symptom questions ask how often and how severely you experience each symptom 'due to PEM'.
How do we answer that when we experience them all the time, whether due to PEM or not, but they get much worse during PEM?

The second set of questions claim to be about a 'series of PEM case definitions', which lists stuff about fatigue and fatiguablity, not PEM. I seem to remember these are the items from previous dePaul questionnaires that he purports identify PEM. Again, they are things I experience all the time, not just in PEM.

Help.

Even after years of feedback the dePaul team seem to be stuck in a loop of misunderstanding PEM, and not listening to feedback. Yet they are considered by some to be the best team working on ME/CFS questionnaires.
 
Trish said:
Is it just me, or has Leonard Jason's team once again completely misrepresented what PEM is?
Click to expand...
You’re not alone! This looks very much like the jumbled mess I encountered when I tried to figure out what PEM actually means before I found S4ME and the discussions around the factsheets.

To me, PEM is the thing that every other concepts aren’t. It’s what you’re left with when you exclude DOMS, fatiguability, over-sensitivity, etc.
 
Trish said:
I copied the questions onto this thread because I wanted to be able to come back to them to think about and discuss them. The more I look at them, the less sense they make. Is it just me, or has Leonard Jason's team once again completely misrepresented what PEM is?
Click to expand...

I answered one years ago with an explanation regarding delayed PEM. So no, they continue to go in loops and not understanding it at all.
 
For me PEM is a delayed reaction to an increase in exertion or stimuli. The reaction can worsening existing symptoms and make new ones appear temporarily. PEM can begin hours after activity in the form of some subtle sensations, like feeling tired and wired, worsened cognitive ability and difficulty calming down and falling asleep. The sleep will be unrefreshing and the next day the symptoms will be very clearly worse compared to the previous day. On PEM days I tend to have difficulty exerting the same strength, have less tolerance of upright activity, pain is felt more intensely, I have difficulty performing any sort of work due to rapid fatiguability, and there seems to be a subtle cognitive impairment that makes it hard to get anything done (maybe a type of executive dysfunction?). Basically I can't be productive even if I try very hard to.

There may be changes in body temperature (a subjective drop), an increase in hunger (eating more than usual seems to help a little bit), or a change in thirst and urinary frequency. There is no fixed symptom profile. Which symptoms get exacerbated seems to depend on the type of activity, other stressors acting on the body (in winter, the drop in body temperature is noticable, but in the summer, the OI and water issues will be apparent), and maybe other obscure factors.

The impact of PEM cannot be understood by looking at how often it occurs or how bad the symptom exacerbation is or how long it lasts. PEM acts as a soft limit to activity levels. My PEM is usually mild because I mildly affected and have adapted my lifestyle to it. That means I have to reduce activities of daily living significantly to achieve a frequency and severity of PEM that is tolerable. Questionnaires that attempt to understand PEM by looking at how often it happens and how bad it is are totally inadequate and risk grossly misrepresenting what PEM is.

A person that is allergic to peanuts has a potentially life threatening problem even if they have not experienced any allergic reactions to peanuts and would have perfectly normal scores on a questionnaire asking about severy and frequency of allergic reactions to peanuts...

How much a person is able to adapt to PEM will depend significantly on their financial situation, responsibilities and other external factors. For example whether they can afford to not work or are forced to work while suffering from susceptibility to PEM. Studying only the internal factors related to PEM will give an incomplete picture.

Susceptibility to PEM is how the problem should be conceived of.
 
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I have just scanned this quickly. The only conclusion I have reached is that if I were to do this thoroughly with proper thought, I would crash myself for a week at least. Maybe I am getting worse or ageing is having an effect but I have begun to be more protective of my energy.
I spend energy on what has to be done and maintaining some minimal contact with family and a few friends.

Thank you to those who help our researchers understand the illness better although it varies such a lot between us that I'm not sure what they can make of it.
 
Hoopoe said:
Susceptibility to PEM is how the problem should be conceived of.
Click to expand...
I think that approach would be more likely to result in something helpful. Studying the symptoms isn't useless, since it could lead to better subgrouping that could reduce noise in studies. It could also lead to treatments for a symptom, although I'd rather see effort made to prevent PEM, which would prevent all related symptoms.

This study could result in better questionnaires, although it doesn't sound like it actually will.
 
“ The survey will take approximately 10–15 minutes”
Well that’s wildly incorrect to start.
There are 43 questions. How many of us can read, process, respond to 3-4 questions a minute. A healthy person maybe but…

I wish more researchers got the basics right
 
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