DSQ-PEM 2 Survey

DePaul University Research Study

Question 1 of 36

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:

  • Kelly Chee (Principal Investigator) – kchee@depaul.edu | 630-888-1465

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
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
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.
Reduced stamina and/or functional capacity

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
Physically fatigued while mentally wired

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
Cognitive exhaustion

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
Problems thinking

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
Unrefreshing sleep

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
Insomnia

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
Muscle pain

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
Muscle weakness/instability

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
Aches all over your body

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
Dizziness

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
Flu-like symptoms

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
Temperature dysregulation

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
Physical fatigue

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
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.
Next day soreness or fatigue after non-strenuous, everyday activities

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
Mentally tired after the slightest effort

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
Physically drained or sick after mild activity

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
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.

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
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.

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
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
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
Are you of Latino or Hispanic origin?
Yes
No
Do you currently live in the United States?
Yes
No
What is your current marital status?
Married or living with partner
Separated
Widowed
Divorced
Never married
Prefer not to answer
What is the highest degree or level of education you have completed?
Less than high school
Some high school
High school degree or GED
Partial college/university (at least one year) or specialized training
Standard college/university degree
Graduate professional degree including masters and doctorate
What is your current work status? (Check all that apply)
On disability
Student
Homemaker
Retired
Unemployed
Working part-time
Working full-time
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
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
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
If you would like, please use this space to share any additional thoughts on your experience with post-exertional malaise or this survey:

Thank you for participating!

Your responses have been recorded. Your participation in this research study is greatly appreciated and will help advance understanding of post-exertional malaise.

If you have any questions about this study, please contact Kelly Chee at kchee@depaul.edu or 630-888-1465.