ME/CFS Neuroinflammation Study Online Survey

Date:

Electronic Signature:
Please type your full name (Last Name, First Name) to verify that you are providing authorization.

Have you carefully read the above information?

Do you understand the above information?

Current Medications: Please provide us your medications that you are currently taking including dosage.

For example:
Tylenol 1000mg three times a day (since Oct 2016)
Advil 400mg four times a day (since Jan 2017)

Last Name, First Name

Date of Birth

Are you right-handed?

Height (feet)

Height (inches)

Weight (lbs)

Gender

Race: White, Asian, Black/African American, Hispanic/Latino, Pacific Islander, Native American, Mixed, Other (please specify). If you do not want to provide your race please write "I do not wish to provide."

Phone number

Email Address

Mailing Address

Education:

How many years of education have you had, starting with 1st grade? Please exclude any time off for travel or child rearing. For example, completing high school is 12 years, a 4 year college after high school would be 16 years. If you had a child during college and took a year off so it took you 5 years to complete, your total number of years of education would still be 16.

What is/are the highest degree(s) that you have attained?

Vision:

Can you see normally (with glasses or contacts as needed)?

Hearing:

Can you hear normally?

Do you suspect that you have CFS?

Have you been diagnosed with CFS?

If so, when did your CFS symptoms begin (month and year)?

If so, who was the doctor who diagnosed you?

Describe how your CFS symptoms started

Was there something that happened right before your CFS that you think might have caused your CFS?

Have you been specifically treated for CFS in the last three months (Cognitive behavioral therapy, antiviral therapy, graded exercise therapy)?

If you were treated for CFS, what kind of treatment did you have?

I have NOT noticed an improvement in my CFS symptoms over the past 3-6 months

If no, please describe:

Do you suspect that you have Major Depressive Disorder?

Have you been diagnosed with Major Depressive Disorder?

If so, how long have you had these symptoms?

Do you experience any of the following?

1. During the past 6 months, have you had persistent or recurring chronic fatigue which affects your occupational, educational, social and personal activities?

In order to answer yes, this fatigue must NOT have been present your whole life and must have had a definite onset, and before this you were normal. The fatigue must NOT be the result of simply exercise. The fatigue must NOT be substantially alleviated by rest.

2. Have you had post-exertional malaise and/or fatigue?

With activity (it need not be strenuous and may be physical/cognitive/emotional), there must be a loss of physical or mental stamina, rapid/sudden muscle or cognitive fatigability, post- exertional malaise and/or fatigue and a tendency for other associated symptoms to worsen. The recovery is slow, often taking 2-24 hours or longer.

Symptoms should be present at least half of the time (that you exercise) and at least moderate in severity.

3. Have you had unrefreshing sleep or disturbance of sleep quantity or rhythm disturbance?

This may include unrefreshing sleep, prolonged sleep (including frequent naps), disturbed sleep (e.g., inability to fall asleep or early awakening) and/or day/night reversal.

Symptoms should be present at least half of the time and at least moderate in severity.

4A. Have you had myofascial and/or joint pain?

Myofascial pain can include deep pain, abdomen/stomach pain, or achy and sore muscles. Pain, stiffness, or tenderness may occur in any joint but must be present in more than one joint and lacking swelling or other signs of inflammation.

4B. Have you had abdominal and/or head pain?

This may experience stomach pain or chest pain. Headaches often described as localized behind the eyes or in the back of the head. May include headaches localized elsewhere, including migraines. Headaches would need to be more frequent than they were before, which would indicate new pattern, of a new type as compared to headaches previously experienced (i.e., location of pain has changed, nature of pain has changed), or different in severity type as compared to headaches you may have previously experienced.

5. Have you had any of the following neurological or cognitive symptoms?

To answer 'yes' symptoms should be present at least half of the time and at least moderate in severity, except in the cases of sensitivity to bright lights/noise and muscle weakness/twitches which can be present any time and with any level of severity.

6A. Have you had the following autonomic symptoms?

6B. Have you had the following neuroendocrine symptoms?

6C. Have you had the following immune symptoms?

7. Have you had any of the following symptoms?

To say yes, the symptom must have started with or after your fatigue started, but not before your fatigue started. Also, the symptom must have been present for 6 or more months, either continuously or on-off.

1. Have you had any of the following Neurological Disorders?

A) Stroke
B) Multiple Sclerosis
C) Movement Disorders
D) Traumatic Brain Injury Requiring an Emergency Room visit
E) Brain MRI with structural abnormality
F) Severe uncontrolled migraines requirement constant treatment/prophylaxis, or occurring more than 3 times/year
G) Brain Infection or Meningitis

If had a neurological disorder, please describe your condition (month/year, duration, severity)

2. Have you had any of the neuropsychiatric disorders:

A) Schizophrenia or Psychosis or Delusion Disorder
B) Bipolar Disorder or Manic Depressive Illness
C) Autism Spectrum Disorder
D) Mental Retardation
E) Attention deficit hyperactivity disorder (ADHD)
F) Illicit substance abuse in the past 6 months (cocaine, heroin, amphetamines, or marijuana)
G) Dementia
H) Eating Disorder (anorexia, bulimia)
I) Treatment with electric convulsive therapy
J) Alcoholism in the past or current (any inpatient /outpatient treatment for alcoholism or withdrawal, attendance at an AA meeting)

If you had one of these above, please describe the month/year when it started, and the duration.

3. Have you had any of the following medical disorders?

A) Untreated hypothyroidism (low thyroid levels)
B) Untreated/Uncontrolled Obstructive Sleep Apnea
C) Narcolepsy
D) Cancer
E) Diabetes - Type 1 or 2
F) Uncontrolled hypertension (high blood pressure) over the past 6 months, or any change in blood pressure medications in the past 6 months
G) Juvenile rheumatoid arthritis
H) Celiac disease (gluten intolerance)
I) Lyme disease
J) Active hepatitis

If you had any of the above medical conditions, please describe (month/year, duration, severity)

4. Have you had any other medical conditions?

If yes, please describe any other medical conditions that you may have had in the past or currently. Please state if the medical condition has resolved or is ongoing.

5. Have you had any surgeries?

If yes, please describe any surgeries that you have undergone:

6. Do you have any medication allergies?

If yes, please describe any medication allergies

1. Do you have any conditions that preclude an MRI such as claustrophobia, history of metal injury to eye, or pacemaker?

2. Have you ever worked as a machinist, metalworker, or in any profession or hobby grinding metal?

3. Have you ever had an injury to the eye(s) by a metallic object (metallic slivers, shavings, or foreign body)?

If so, please describe the injury, and what has happened since (i.e. if the metal was removed, and if you have had an MRI since the injury).

4. Do you have any other metal in your body permanently?

4b. Please describe what metal is permanently implanted in your body:

5. Some of the following items may be Hazardous to your safety and some may interfere with the MRI examination. Do you have any of the following?

If there is anything that you wish to provide that was not captured in this survey, please write it here.