Mold Avoidance Survey Questions
GO TO THE MOLD AVOIDANCE SURVEY
Introduction
This survey is designed to learn more about the experiences of people who have made an effort to decrease their exposure to environmental mold toxins in order to try to improve or protect their health.
This could mean moving away from or remediating a moldy home, for instance.
Or it could mean being very scrupulous about avoiding even tiny amounts of mold toxins.
Anyone who has done any sort of mold avoidance for any health reason is encouraged to participate.
This is an anonymous survey.
Any information that might allow people to guess your identify will not be released.
This survey was approved as an Exempt research study by the Institutional Review Board (IRB) at Northwestern University.
Please take the survey only one time.
More information about the survey is at this link (cut and paste into a different window):
https://paradigmchange.me/survey/
Thanks very much for participating!
Best,
Lisa Petrison, Ph.D.
Executive Director
Paradigm Change
Paul Wang, Ph.D.
Associate Professor
Northwestern University
Question 1
Which of the following describes your situation?
* I am filling out the survey on my own behalf.
* I am a parent or guardian filling out the survey on behalf of a child.
Question 2
Note: Please feel free to skip over any survey questions that you prefer not to answer or cannot answer.
Which of these mold avoidance activities have you done? Check all that apply.
* I remediated my home for a major toxic mold problem and am living in it now.
* I moved out of a home with a major toxic mold problem to a different home.
* I stopped working or going to school in a building with a major toxic mold problem.
* I went on a sabbatical away from my suspect home and possessions to see if it made a difference for me.
* When moving from a home with a toxic mold problem, I disposed of SOME of my belongings or put them in storage.
* When moving from home with a toxic mold problem, I disposed of ALL (or almost all) of my belongings or put them in storage.
* I had an ERMI or HERTSMI-2 test done on my current home and it came up okay for me.
Question 3
Which of these additional mold avoidance activities have you done? Check all that apply.
* When I have a choice, I try to stay out of moldy buildings.
* I use my own reactions to determine whether I am being exposed to mold toxins that might be harmful to me.
* I routinely take a shower and change clothes as soon as possible after being exposed to problematic mold toxins.
* I moved from a location that I suspected or knew had problematic toxins for me in the outdoor air to a location that seemed like it might be better for me.
* I periodically spend time in relatively pristine places in order to get clear of toxic exposures.
* I have been known to shift locations in order to avoid plumes of toxins in the outdoor air.
* I have lived in a tent or vehicle for more than a few weeks at a time in order to reduce my exposure to mold toxins.
Question 4
Note: For the purposes of this survey, please consider the definition of “mold avoidance” to include whatever activities you personally have done in order to decrease your exposures to environmental molds or microbial toxins for health reasons.
All in all, how difficult has pursuing mold avoidance been for you?
* Monumentally difficult
* Very difficult
* Moderately difficult
* A little difficult
* Not at all difficult
* Not sure
Question 5
How big of a problem has each of the following been for you since starting any kind of mold avoidance?
Items:
* Finding a non-harmful place to live
* Keeping afloat financially
* Dealing with day-to-day mold exposures that occur
* Gaining the support of loved ones
* Maintaining emotional or spiritual equilibrium
Scale:
* Enormous problem
* Major problem
* Moderate problem
* Minor problem
* Not a problem
* Not sure
Question 6
Has your reactivity to environmental mold toxins decreased since you started pursuing any kind of mold avoidance?
* It has decreased so much that it’s no longer a noticeable problem
* It has decreased a great deal
* It has decreased somewhat
* It has decreased a little
* It has stayed the same
* It has gotten worse
* Reactivity never was a noticeable problem for me.
* Not sure
Question 7
How good are you at immediately sensing or guessing whether you currently are being exposed to environmental mold toxins that will turn out to be a problem for you?
* Extremely good
* Very good
* Fairly good
* Not that great
* Not able to do that at all
* Not sure
Question 8
Looking back, all in all, how do you feel about having decided to pursue mold avoidance?
* Very glad
* Somewhat glad
* Neither glad nor sorry
* Somewhat sorry
* Very sorry
* Not sure
How much activity did your health regularly allow in the few months just PRIOR to starting mold avoidance?
Please choose the one statement that best describes what your life was like then.
* I could work or be active for 60 hour 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 bedridden and rarely could read or participate in conversations.
Question 10
How much activity did your health regularly allow in the past few RECENT months?
Please choose the one statement that best describes what your life was like then.
(This is the same scale used on the last page.)
* I could work or be active for 60 hour 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 bedridden and rarely could read or participate in conversations.
Question 11
Note: This section is the toughest but most important one of the survey. Hang in there!
Here is a list of health symptoms. Please note how much of a problem each was for you in the few months PRIOR to starting mold avoidance and then in the RECENT few months.
Items:
* Feeling worse for a long time after activity or exercise.
* Cognitive issues (e.g. with thinking, concentrating or remembering
* Sensitivities or allergies to chemicals (other than those made by microbes), EMF’s, medications, latex or other environmental substances
* Sensitivities or allergies to foods.
* Sensitivities to light, sound or touch
Columns:
* Few Months PRIOR to Mold Avoidance
* RECENT Few Months
Scale:
* Very severe problem
* Severe problem
* Moderate problem
* Mild problem
* Very mild problem
* Not a problem
Question 12
Here is a list of additional health symptoms. Please note how much of a problem each was for you in the few months PRIOR to starting mold avoidance and then in the RECENT few months.
Items:
* Difficulties with sitting or standing (such as POTS, OI, low blood pressure or vertigo)
* Flu-like symptoms (such as respiratory problems, sore throat, swollen lymph nodes or sinus infections)
* Unrefreshing sleep
* Other sleep problems (such as insomnia, oversleeping or reversed sleep patterns)
* Problems with thermostatic stability (such as abnormal body temperature, feeling too cold or hot, or sweating episodes).
Columns:
* Few Months PRIOR to Mold Avoidance
* RECENT Few Months
Scale:
* Very severe problem
* Severe problem
* Moderate problem
* Mild problem
* Very mild problem
* Not a problem
Question 13
Here is a list of additional health symptoms. Please note how much of a problem each was for you in the few months PRIOR to starting mold avoidance and then in the RECENT few months.
Items:
* Eyesight problems (such as blurred vision or visual contrast issues)
* Seizures or convulsions
* Motor issues (such as muscle weakness, poor coordination, tremors, tics or paralysis)
* Gastrointestinal issues (such as nausea, abdominal pain, heartburn, constipation or IBS)
* Body pain (such as painful muscles, trigger points or joints)
* Headaches
Columns:
* Few Months PRIOR to Mold Avoidance
* RECENT Few Months
Scale:
* Very severe problem
* Severe problem
* Moderate problem
* Mild problem
* Very mild problem
* Not a problem
Question 14
Here is a final list of health symptoms. Please note how much of a problem each was for you in the few months PRIOR to starting mold avoidance and then in the RECENT few months.
Items:
* Blood sugar issues (such as diabetes or hypoglycemia)
* Skin issues (such as rashes, hives, itching or burning)
* Weight issues (such as overweight, underweight, bloating or abnormal gain/loss)
* Low energy (such as fatigue or tiredness)
* Mood issues (such as depression, anxiety, irritability or suicidal thoughts)
* Generally feeling terrible
Columns:
* Few Months PRIOR to Mold Avoidance
* RECENT Few Months
Scale:
* Very severe problem
* Severe problem
* Moderate problem
* Mild problem
* Very mild problem
* Not a problem
Question 15
How true were the following statements for you in the few months just PRIOR to starting any kin of mold avoidance? How true have they been for you in RECENT months?
Items:
* I could do vigorous exercise (such as running or skiing)
* I could do mild exercise (such as walking or yoga)
* I could spend the whole day out and about without paying for it later
* I could count on my brain being fully there for me when I needed it
* I could drive without any problems
* Overall, my life felt pretty good
Columns:
* Few Months PRIOR to Mold Avoidance
* RECENT Few Months
Scale:
* Totally true
* Somewhat true
* Neither true nor untrue
* Somewhat untrue
* Totally untrue
Question 16
What year did you first start pursuing any kind of mold avoidance? _________
Question 17
Note: Please enter the postal codes only if you easily remember them.
Where were you living immediately before you began any kind of mold avoidance?
Town ___________
State or Province __________
Country __________
Postal Code __________
Question 18
Where are you living now (or where do you spend the most time)?
Town ___________
State or Province __________
Country __________
Postal Code __________
Question 19
What is your gender?
* Female
* Male
Question 20
What year were you born? ____________
Question 21
Note: For the purposes of this survey, ME = ICC or CCC definition; CFS = CDC (Fukuda) or IOM definition.
Which of the following diagnoses have you qualified for at some point in your life? Check all that apply.
* Myalgic encephalomyelitis (ME)
* Chronic fatigue syndrome (CFS)
* Chronic Lyme disease
* Post Lyme disease syndrome
* Fibromyalgia (FM)
* Gulf War illness (GWI)
* Chronic inflammatory response syndrome (CIRS)
* Toxic mold illness
* Multiple chemical sensitivity (MCS)
* Environmental illness (EI)
* Gluten or other food sensitivities
* Toxic encephalopathy
* Postural orthostatic tachycardia syndrome (POTS)
* Morgellons
* Autism spectrum disorder (ASD)
* Attention deficit hyperactivity disorder (ADHD)
* Amyotrophic lateral sclerosis (ALS)
* Multiple sclerosis (MS)
* Lupus
* Sjogren’s syndrome
* Parkinson’s disease
* Sarcoidosis
* Paralysis or other spinal cord conditions
* Mold allergy
* Asthma
* Depression, anxiety disorder or other mood disorder
* Other _____________________________________
Question 22
This page is being seen only by participants who said that they had qualified for a diagnosis of ME, CFS, chronic/post Lyme, fibro, GWI, CIRS, toxic mold illness or POTS.
What year did you FIRST become chronically sick with this kind of illness (so that it had an ongoing significant effect on your life)?
________
Question 23
Note: Please enter the postal codes only if you easily remember them.
Where were you living when you FIRST became chronically sick with this kind of illness?
Town __________
State or Province __________
Country __________
Postal Code __________
Question 24
Where were you living when you were the MOST sick with this kind of illness?
Town __________
State or Province __________
Country __________
Postal Code __________
Question 25
Have you had an HLA DR genetic test done?
* Yes
* No
* Not sure
Question 26
What is the supposed HLA DR susceptibility for each of your genes?
Items:
* One gene
* The other gene
Choices:
* Multi susceptible
* Mold susceptible
* Borrelia susceptible (post Lyme syndrome)
* Low MSH (1-5)
* Other susceptible
* Not susceptible
* Not sure
Question 27
Where have you been sleeping during the past few months? Check all that apply.
* Conventional house
* Cabin, casita, tiny house or other small residence.
* Garage, shed or similar building.
* Apartment, condominium or flat
* Hotel, motel or inn
* Outdoor structure (such as a gazebo, screen room or balcony)
* Non-residential building (such as an office or store)
* RV or converted cargo trailer
* Vehicle (such as a car, van or non-converted cargo trailer)
* Boat or yacht
* Tent or teepee
* In the open without shelter
Question 28
Are you currently working for compensation?
* Yes, full-time, in a comparable job to the one I had (or was studying to obtain) pre-illness.
* Yes, full-time, but in a less demanding job than the one I had (or was studying to obtain) pre-illness.
* Yes, part-time.
* No, but I spend significant amounts of time on volunteer work or on projects that eventually may lead to financial gain.
* No, but I am raising a kid (or kids).
* No, but I am going to school.
* No, I’m not currently working.
Question 29
What is your current relationship status?
* Never married
* Member of unmarried couple
* Married
* Separated
* Divorced
* Widowed
Question 30
Do you have children?
* Yes, under age 19
* Yes, but none under age 19
* No
Question 31
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)
Question 32
The next questions in the survey are about other treatments that may have helped you during the time since you have been pursuing mold avoidance.
People have reported that they take between 6-10 minutes to complete.
If you are feeling burnt out by now, then you can skip these questions on other treatments.
Regardless of what you choose to do, thank you for your participation!
What would you like to do?
* Answer questions about other treatments.
* Skip the questions about other treatments.
Question 33
How helpful has each of the following mold avoidance activities appeared to have been for you since starting any kind of mold avoidance?
Items:
* Staying out of problematic buildings
* Paying attention to cross-contamination of possessions
* Staying away from locations with problematic outdoor air
* Showering and changing clothes after exposures
* Avoiding toxins in tap water
* Avoiding toxins in foods
Choices:
* Critically important
* Very helpful
* Somewhat helpful
* A little helpful
* Not helpful
* Not sure
* Not tried
Question 34
How helpful has each of the following detoxification treatments appeared to have been for you since starting mold avoidance?
Items:
* Sweating (e.g. through sauna, hot springs, heat or exercise)
* Cholestyramine (CSM)
* Welchol
* Oher intestinal binders (e.g. bentonite clay, activated charcoal or CholestePure)
* Chelation (e.g. EDTA or ALA)
* Nutritional supplements (e.g. to support methylation or address pyroluria)
* Glutathione
* Juicing, green smoothies or raw produce
* Coffee enemas
* Colonics
Choices:
* Critically important
* Very helpful
* Somewhat helpful
* A little helpful
* Not helpful
* Not sure
* Not tried
Question 35
How helpful has each of these pathogen treatments appeared to have been for you since starting mold avoidance?
Items:
* Antiviral drugs
* Antibiotic drugs
* Antiparasitical drugs
* Antifungal (or anticandida) drugs
* Treatment of fungal sinus infections
* Treatment of MARCoNS sinus infections
* Herbs
* Chlorine dioxide (CD)
Choices:
* Critically important
* Very helpful
* Somewhat helpful
* A little helpful
* Not helpful
* Not sure
* Not tried
Question 36
How helpful has each of these drug treatment or natural remedies appeared to have been for you since starting mold avoidance?
Items:
* Vasoactive intestinal peptide (VIP)
* Desmopressin (DDAVP)
* Bioidentical hormones
* Low-dose naltrexone (LDN)
* Benzodiazapines (e.g. Klonopin)
* Anticonvulsants
* Ampligen
* Marijuana
* Immune suppressant drugs
* Mast cell inhibitor drugs or supplements
* Probiotic supplements
* Homeopathic remedies (e.g. Hahnemann or Boiron)
Choices:
* Critically important
* Very helpful
* Somewhat helpful
* A little helpful
* Not helpful
* Not sure
* Not tried
Question 37
How helpful has each of these nutritional supplements appeared to have been for you since starting mold avoidance?
Items:
* Nutritional IV’s (e.g. Vitamin C, Myers cocktails, ALA or saline solution)
* Vitamin B12
* Activated folate
* Any other B vitamins
* Vitamin C
* Vitamin D
* Coenzyme Q10
* Magnesium
* Omega 3 oils (e.g. flax or fish oil)
* Phosphatidyl choline
Choices:
* Critically important
* Very helpful
* Somewhat helpful
* A little helpful
* Not helpful
* Not sure
* Not tried
Question 38
How helpful has each of these dietary choices appeared to have been for you since starting mold avoidance?
Items:
* Autoimmune Paleo diet (e.g. GAPS or SCD)
* Paleo diet (e.g. Bulletproof or Wahls)
* Large amounts of produce
* Fermented foods
* Extra dietary electrolytes (e.g. salt or potassium)
* Avoidance of manmade chemicals (e.g. organic diet)
* Low-mycotoxin diet
* Gluten-free diet
* Avoidance of other problem foods
Choices:
* Critically important
* Very helpful
* Somewhat helpful
* A little helpful
* Not helpful
* Not sure
* Not tried
Question 39
How helpful has each of these other therapies appeared to have been for you since starting mold avoidance?
Items:
* Bodywork (e.g. massage, reflexology or craniosacral)
* Neural therapy
* Acupuncture
* Chiropractor
* Active exercise (e.g. walking or swimming)
* Stretching exercise (e.g. yoga or tai chi)
* Hyperbaric oxygen therapy (HBOT)
* Ozone therapy
* Environmental air filters
* Filtration mask
Choices:
* Critically important
* Very helpful
* Somewhat helpful
* A little helpful
* Not helpful
* Not sure
* Not tried
Question 40
How helpful have you found brain retraining or amygdala retraining techniques to be for controlling your reactions to MOLD toxins?
Choices:
* Critically important
* Very helpful
* Somewhat helpful
* A little helpful
* Not helpful
* Not sure
* Not tried
Question 41
If there are additional treatments that you have found to be particularly helpful, please list them here. You can write as much as you like in this box.
Question 42
Please answer this one last major question.
All in all, have you found any of the following mold tests to be helpful in terms of predicting whether you will be able to successfully live in particular buildings?
Items:
* ERMI
* HERTSMI-2
* Professional air tests
* Petri dish tests
* Thermographic imaging
* Moisture meter
* Mold dog
* Paying attention to your own physiological or emotional reactions
Choices:
* Has provided very helpful information
* Has provided somewhat helpful information
* Has not provided helpful information
* Has provided misleading information
* Not sure
* Not tried
Question 43
Note: This is the last question. You will not be able to go back and change answers after you go to the next page.
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.
Final Page
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 good luck in the future.