Chronic Illness Survey Questions
Note: Question marked with a number sign (#) will be asked only of some participants, based on their responses to earlier questions on the survey.
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This survey is designed to learn more about the experiences of people with chronic illness that includes a wide variety of symptoms.
This type of illness includes conditions such as ME/CFS, fibromyalgia, MCS, chronic Lyme, toxic mold illness, CIRS, POTS, MS, autism and other similar diseases.
If you choose to participate, you will be asked a number of questions about your illness experiences, including factors that may have been related to your illness onset.
If you have children, you will be asked to supply information about any health conditions they may have had.
This is an anonymous survey and is being conducted through Northwestern University.
Anyone who is age 18 or older and who has had any kind of chronic illness of this sort at any time during his or her life is encouraged to participate.
More information about the survey is at this link:
https://paradigmchange.me/wp/survey1/
Thanks very much for participating!
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Following is a letter about the survey from the lead researcher:
I am Paul Wang, Ph.D., an associate professor in the Medill School of Journalism at Northwestern University (located in Evanston, Illinois, USA).
My co-author and I are conducting a research study to collect information about the experiences of individuals with chronic multisymptom illnesses.
If you decide to participate, you will be asked to answer questions about your illness experiences and factors related to your illness, as well as to supply some demographic information.
You also will be asked to supply some information about health conditions experienced by any children you have had.
Taking part in this research study may help researchers to better understand the role of various predisposing factors in these illnesses and conceivably might facilitate the development of more effective prevention and treatment of these illnesses. This may or may not end up having any direct benefits to you.
This is an anonymous survey. You will not be asked to supply information identifying you.
Participation in this study will involve no cost to you. You will not be paid for participating in this study.
Individuals may participate in this survey regardless of where they live.
This survey is being hosted by Survey Gizmo and does not involve a secure connection. Terms of Service, addressing confidentiality, may be viewed at:
http://www.surveygizmo.com/terms/
The results of the research study may be published, but no data that might identify you will be used.
Your participation in this research study is completely voluntary. You can skip questions in the survey and you can withdraw at any time by just exiting the survey.
If you have any questions about this study you may contact the researchers. Dr. Paul Wang is the person in charge of this research study and can be reached at p-wang@northwestern.edu. You also can contact Dr. Lisa Petrison at lisapetrison@gmail.com.
Questions about your rights as a research subject may be directed to the Institutional Review Board (IRB) Office of Northwestern University at 1-312-503-9338.
If you wish to participate, proceed to the next page to begin the survey.
Sincerely,
Paul Wang, Ph.D.
Medill School of Journalism
Northwestern University
Evanston, IL 60208
p-wang@northwestern.edu
847-863-6889
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1. Which of the following diagnoses have you qualified for at some point in your life? Check all that apply.
* Abdominal adhesions
* Alzheimer’s disease
* Amyotrophic lateral sclerosis (ALS)
* Asperger’s syndrome
* Asthma
* Autoimmune disease
* Attention deficit disorder (ADD or ADHD)
* Autism spectrum disorder (ASD)
* Chronic fatigue syndrome (ME/CFS or CFS)
* Chronic inflammatory response syndrome (CIRS)
* Chronic Lyme disease
* Eating disorder (e.g. anorexia or bulimia)
* Endometriosis
* Environmental illness (EI)
* Fibromyalgia (FM)
* Gluten or other food sensitivities
* Gulf War illness (GWI)
* Hypothyroidism
* Inflammatory bowel disease (e.g. Crohn’s or ulcerative colitis)
* Irritable bowel syndrome (IBS)
* Mood disorder (e.g. depression or anxiety)
* Morgellons
* Multiple chemical sensitivity (MCS)
* Myalgic encephalomyelitis (ME)
* Multiple sclerosis (MS)
* Parkinson’s disease
* Post Lyme disease syndrome
* Postural orthostatic tachycardia syndrome (POTS)
* Toxic mold illness
* Other _____________________________
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2. What is your gender?
* Female
* Male
3. What is your current country of residence? ____________________
4. What year were you born? _________________
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5. During the six months in your life that you were the MOST SICK with this kind of illness, how much activity did your health regularly allow?
Please choose the one statement that best describes what your life was like then.
* I could work or be active for 60 hours a week or more.
* I could work or be active for about 50 hours a week.
* I could work or be active for about 40 hours a week.
* I could work or be active for about 30 hours a week.
* I could work or be active for about 20 hours a week.
* I could work or be active for about 10 hours a week.
* I could go out to shop or socialize a few times a week.
* I rarely could go out to shop or socialize, but I was not bedridden.
* I was basically bedridden but frequently could read or participate in conversations.
* I was totally bedridden and rarely could read or participate in conversations.
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6. Please think back to the six months of your illness when you were the MOST SICK.
Then please note how much of a problem each of the following health symptoms was for you over the course of this period of time.
Scale:
* Very severe problem
* Severe problem
* Moderate problem
* Mild problem
* Very mild problem
* Not a problem
Items:
* Cognitive issues (e.g. with thinking, concentrating or remembering).
* Feeling worse for a long time after activity or exercise.
* Motor issues (e.g. muscle weakness, poor coordination, tremors, tics or paralysis).
* Difficulties with sitting or standing (e.g. POTS, OI or low blood pressure).
* Flu-like symptoms (e.g. respiratory problems, sore throat, swollen lymph nodes or sinus infections).
* Problems with thermostatic stability (e.g. body temperature, feeling too cold or hot, or sweating episode).
* Sleep problems (e.g. unrefreshing sleep or insomnia).
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7. Please think back to the six months of your illness when you were the MOST SICK.
Then please note how much of a problem each of the following health symptoms was for you over the course of this period of time.
Scale:
* Very severe problem
* Severe problem
* Moderate problem
* Mild problem
* Very mild problem
* Not a problem
Items:
* Body pain (e.g. painful muscles, trigger points or joints).
* Headaches.
* Sensitivities to environmental stimuli (e.g. chemicals, mold toxins, EMF’s, light or sound).
* Food sensitivities.
* Skin issues (such as rashes, hives, itching or burning).
* Gastrointestinal issues (e.g. nausea, abdominal pain, heartburn, constipation, or IBS).
* Mood issues (e.g. depression, anxiety, irritability or suicidal thoughts).
* Low energy (e.g. fatigue or tiredness).
* Generally feeling terrible.
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Now think back to when you FIRST became sick with this sort of illness to the point that it had an ongoing and substantial negative impact on your life
This could have been when you first got sick with the illness at all. Or it could be a time when mild or sporadic health problems got a lot worse.
8. What year did this occur? __________________
9. Where were you living at the time?
Town ___________
State or Province ___________
Country __________
10. At the time of your illness onset, were you at home or were you on a trip somewhere else?
* At home.
* On a trip.
* Not sure.
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#11. Where were you visiting at the time of your illness onset?
Town __________________________
State or Province ________________________
Country ________________________
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12. Now, continue to think about that same period of time when you FIRST got chronically sick (or when your mild or sporadic illness became much worse).
Did you experience any of the following diseases during that time or during the year or so prior to it?
Please check all items that apply.
* Particularly bad flu or flu-like illness.
* Mononucleosis (EBV-related).
* Shingles.
* Bell’s palsy.
* Herpes simplex.
* Q fever (coxiella burnetii).
* C. difficile infection.
* Giardia infection.
* Borrelia (Lyme) infection.
* Other tick-borne infection.
* Bronchitis or pneumonia.
* Sinus infection.
* Food poisoning.
* None of the above.
13. If you experienced other infectious diseases of note during this same period, please list them here.
You can write as much as you like in this box.
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14. For this question, continue to think about the same period of time when you first got chronically ill (or when your mild or sporadic illness became much worse).
During the year or so prior to this, did any of the following events occur in your life?
Please check all of the events that happened to you during that period of time.
* Concussion or head injury
* Neck or back injury.
* Pregnancy.
* Miscarriage or stillbirth.
* Usage of contraceptive pills.
* Usage of SSRI’s or other antidepressants.
* Usage of fluoroquinolone antibiotics (e.g. ciprofloxacin or levofloxacin).
* Usage of corticosteroids (e.g. prednisone).
* Cancer chemotherapy.
* Large amount of seafood consumption.
* Vegan diet.
* Large amounts of overwork.
* Large amounts of emotional stress.
* Large amounts of intense physical exercise.
* Living, working or attending school in a particularly moldy building (suspected).
* Living, working or attending school in a particularly moldy building (certain).
* Other biotoxin exposure (e.g. from cyanobacteria, spider or snake).
* Usage of indoor swimming pool.
* Hepatitis B vaccine.
* Flu vaccine.
* Other vaccine.
* Root canal
* Removal of metal dental fillings.
* Significant exposures to chemicals or heavy metals.
* Moved to a new town.
* Frequent air travel.
* International travel.
* Travel to a historical ME/CFS cluster area.
* None of the above.
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For this page, please continue to think about the time period when you first got sick(er) and the year or so prior to that.
15. Please feel free to share any additional factors about your illness onset that you believe may be relevant.
You can write as much as you like in this box.
#16. Please share more information about the biotoxin exposure that you mentioned on the previous page.
#17. What other vaccine(s) did you receive during this time period?
#18. What kind of precautions (if any) did the dentist removing the metal filling(s) take to protect you during the procedure?
#19. Please provide some details about the significant exposures to chemicals or heavy metals that you experienced during this time.
#20. Where did you move during this time?
#21. What other countries did you travel to during this time?
#22. What specific historical ME/CFS cluster area(s) did you travel to during this time?
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23. Which of the following statements are true for you? Please check all that apply.
* I have given birth to at least one child.
* I have fathered a biological child.
* I have adopted a child.
* I have had one or more miscarriages.
* My partner has had one or more miscarriages.
* My partner and I have struggled with infertility issues.
* I would have liked to have been a parent (or to have had additional children), but my illness has interfered with that.
* None of the above.
24. Since beginning to experience illness symptoms, have you had any biological children?
* Yes, I have had at least one child since starting to get sick.
* No, I have tried to have a child since starting to get sick but not succeeded.
* No, I have no tried to have a child since starting to get sick.
* Permanent factors (such as hysterectomy, vasectomy or menopause) have prevented me from having a child since starting to get sick.
* Other (specify). _____________________
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#25. How many miscarriages have you or your partner had? ________________
#26. Have you or your partner used fertility drugs?
* Yes
* No
#27. Have you or your partner used in vitro fertilization?
* Yes – # of Times ______________________
* No
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CHILD #1
This section asks you some questions about your children.
Please choose one child at a time and answer questions for him or her.
Please include both biological and adopted children.
Also include any deceased or stillborn children as well as children who are still living.
You may answer questions about up to nine children.
#28. Which of the following are true of this child?
* I adopted this child.
* This child was conceived with reproductive help (such as fertility drugs or IVF).
* This child was born or adopted after I started to exhibit signs of chronic illness.
* This child has had metal dental fillings.
* This child has spent significant amounts of time in a particularly moldy building.
* This child was stillborn.
* This child is deceased.
#29. What is/was this child’s gender?
* Female
* Male
#30. What year was this child born?
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CHILD #1
#31. What was the cause of death?
#32. How old was the child at the time of death?
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#33. How was this child born?
* Vaginal delivery without drugs.
* Vaginal delivery with drugs.
* Caesarean delivery.
* I don’t know.
#34. Was this child breast fed?
* Yes, and is still being breast fed.
* Yes, for more than 18 months.
* Yes, for 12-18 months.
* Yes, for 6-12 months.
* Yes, for 3-6 months.
* Yes, for less than 3 months.
* Yes, but for a few weeks at most.
* No.
* I don’t know.
#35. What vaccinations has this child received?
* All the recommended vaccines, basically according to the official schedule.
* All of the recommended vaccines, but at least some were delayed.
* Some of the recommended vaccines.
* Just a few of the recommended vaccines.
* No vaccines at all so far.
* I don’t know.
#36. Has this child ever had a negative reaction to a vaccine?
* Yes, definitely.
* Yes, possibly.
* No, I don’t think so.
* No, definitely not.
* I don’t know.
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CHILD #1
#37. Has this child had any of the following health conditions or problems?
Please check all that have been issues at any time during this individual’s life.
* Asperger’s syndrome
* Asthma
* Attention deficit disorder (ADD or ADHD)
* Autism spectrum disorder (ASD)
* Chronic fatigue syndrome (ME/CFS or CFS)
* Chronic inflammatory response syndrome (CIRS)
* Chronic Lyme disease
* Colds or infections (frequent)
* Developmental disability
* Diabetes – Type 1
* Diabetes – Type 2
* Eating disorder (e.g. anorexia or bulimia)
* Environmental allergies (severe)
* Environmental illness EI)
* Fibromyalgia (FM)
* Gluten or other food sensitivities
* Gulf War illness (GWI)
* Intestinal issues (e.g. IBS Crohn’s or ulcerative colitis)
* Learning disability (e.g. dyslexia)
* Mood disorder (e.g. depression or anxiety)
* Multiple chemical sensitivity (MCS)
* Multiple sclerosis (MS)
* Myalgic encephalomyelitis (ME)
* Overweight/obese
* Post Lyme disease syndrome
* Scoliosis
* Toxic mold illness
* I don’t know
* None of the above
#38. Please list any other important medical conditions that this child has had during childhood or adulthood.
You can write as much as you like in this box.
#39. Do you have any additional children to answer questions about?
* Yes
* No
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Now there are just a few more questions.
40. What is the highest level of education that you have completed?
* Less than high school diploma
* High school diploma (12 years of schooling)
* Some college or associate’s degree (14 years of schooling)
* College degree (16 years of schooling)
* Master’s degree (e.g. MBA, MS, MA)
* Doctoral degree (e.g. MD, PhD, JD)
41. What is your current relationship status?
* Never married
* Member of unmarried couple
* Married
* Separated
* Divorced
* Widowed
42. Are you currently working for financial compensation?
* Yes, full-time.
* Yes, part-time.
* No, but I am going to school.
* No, but I am raising kids.
* No, but I am spending significant amounts of time on volunteer work.
* No, I’m not currently working.
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This is the last question. You will not be able to go back and change answers after you proceed to the next page.
43. If you have any additional comments that you would like to make, please share them here. You can write as much as you like in this box.
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That’s it!!
If you have questions or comments about this survey, please send them to:
The results of this survey will be shared in the future on the Paradigm Change website:
Thanks very much for participating and we wish you the best of health in the future.