International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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Request from Dr Leonard Jason to patients to review this PEM questionnaire

Discussion in 'Latest ME/CFS Research' started by Countrygirl, Feb 14, 2018.

  1. Countrygirl

    Countrygirl Senior Member

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    Dr Jason is creating a PEM questionnaire and he is adapting it based on patient feedback.

    If you haven't seen it, here it is! If you have any suggestions or comments you can contact him via his Facebook page.

    https://www.facebook.com/leonard.ja...GTIU_e7mi1daG0r4MUQoyoCTbAQ2RVGgq_Q_M&fref=nf



    Dear Patient community:

    We have now revised the questionnaire that we been working on, and please feel free to once gain give us your thoughts. It is a bit long, but we have wanted to try to bring in many of the important issues that the patient community has alerted us to.
    Thank you again for your help in developing a patient driven questionnaire on this core symptom of ME. Some of the formatting did get somewhat messed up, but you can get a good idea of where this is headed.
    Lenny Jason

    Abnormal Response to Physical or Cognitive Exertion Questionnaire

    We are interested in knowing if you have an abnormal response to physical and/or cognitive exertion and as a result experience zero energy, feel sick, or your symptoms worsen. Some people call this a crash, exhaustion or post-exertional malaise (PEM). To get an idea of what we are trying to assess, here is one person’s description of her experience: “It is not getting tired. It is so much more. The whole body just feels like it stops functioning properly. Everything aches, I can't sleep, I am cold and can't control my body temperature I can't think, I have problems making decisions, even easy decisions like if I want to eat or drink something. And then, for days, I am feeling weak and worse than normal. With horrible headaches.”

    The following questions will help us determine if you are experiencing an abnormal response to physical and/or cognitive exertion that is much more than being tired.

    DISCLAIMER: You do not need to complete this survey at one time, and you can begin working on it and take as many breaks or as many days as you need to complete it.

    1. If you go beyond your energy limits by engaging in pre-illness tolerated exercise or activities of daily living, do you experience any of the following:
    Substantial reduction in pre-illness activity level. Yes____ No_____
    Post-exertional exhaustion. Yes____ No_____
    Symptom exacerbation. Yes____ No_____
    Prolonged worsening of symptoms. Yes____ No_____
    Global worsening of multi-systemic symptoms (an example of this might be aches all over your
    body plus cognitive problems plus light or sound sensitivity). Yes____ No_____

    2. If you experience this abnormal response to physical and/or cognitive exertion (which we will refer to as symptom exacerbation), which symptoms below are made worse:

    3. Physical fatigue: Yes____ No_____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    4. Physical fatigue while mentally wired: Yes____ No_____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    5. Increased heart rate and/or heart rate palpitations: Yes____ No_____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    6. Decreased heart rate: Yes____ No_____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    7. Neurological symptoms (tremor, gait abnormalities, seizure, or new neurological symptoms not usually present): Yes____ No_____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    8. Cognitive fatigue: Yes____ No_____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    9. Problems thinking (e.g. slowed information processing speed, memory, concentration):
    Yes____ No_____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    10. Ataxia (trouble with gait or balance) and problems with speech: Yes____ No____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    11. Brain twangs (as if someone is breaking guitar strings in your head): Yes____ No_____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    12. Making simple decisions: Yes____ No_____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    13. Unrefreshing sleep: Yes____ No_____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    14. Insomnia: Yes____ No_____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    15. Excessive sleep: Yes____ No_____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    16. Muscle pain: Yes____ No_____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    17. Joint pain: Yes____ No_____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    18. Headaches/migraines: Yes____ No_____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    19. Weakness/instability: Yes____ No_____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    20. Light-headedness: Yes____ No_____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    21. Flu-like symptoms: Yes____ No_____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    22. Sore throats: Yes____ No_____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    23. Nausea: Yes____ No_____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    24. Reduced stamina and/or functional capacity: Yes____ No_____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    25. Feeling poisoned (like something heavy and alien is coursing through your blood): Yes____ No____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    26. Night sweats and chills : Yes____ No____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    27. Muscles burn and pain: Yes____ No____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    28. Need to lie down: Yes____ No____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    29. Dizziness: Yes____ No____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    30. Gastro-intestinal problems: Yes____ No____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    31. Premenstrual symptom exacerbation: Yes____ No____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    32. Shaking: Yes____ No____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    33. Paralysis/inability to move: Yes____ No____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    34. Sore eyes: Yes____ No____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    35. Sore lymph nodes: Yes____ No____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    36. Weak or stiff neck: Yes____ No____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    37. Bacterial and/or virus activation: Yes____ No____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    38. Increased heart rate from usual for the same activity: Yes____ No_____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    39. Temperature dysregulation (parts of your body get abnormally hot or cold): Yes____ No____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    40. Severe burning sensation all over your skin: Yes____ No_____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    41.Other symptoms please specify: ____________________
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    42. Is the onset of your symptom exacerbation immediate after the exertion? Yes____ No_____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    43. Is the onset of your symptom exacerbation delayed after the exertion? Yes____ No_____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    44. If your onset is delayed, indicate how long after the exertion does your symptom exacerbation occur (check one box below):
     1 hour or less
     2-3 Hrs
     4-10 Hrs
     11-13 Hrs
     14-23 Hrs
     More than 24 Hrs (Please specify__________)

    44a. If your onset is delayed, please indicate after what activities:

    _______________________________________________

    44b. If your onset is delayed, please indicate for which symptoms:
    _________________________________________________

    44c. If your onset is immediate, please indicate after what activities:

    _________________________________________________

    44d. If your onset is immediate, please indicate for which symptoms:
    _________________________________________________

    45. Does your prolonged, unpredictable recovery period from symptom exacerbation last days, weeks, or even months?
    Yes____ No_____
    45a. If yes, how long does your prolonged, unpredictable recovery period last (check one box below):
     Within 24 hours
     Between 24 hours and 1 week
     Between 1 week and 1 month
     Between 1 month and 6 months
     Between 6 months and 12 months
     Between 12 months and 2 years
     Over 2 years

    46. Is the severity and duration of your symptom exacerbation symptoms out-of-proportion to the type of the exertion? Yes____ No_____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    47. Is the severity and duration of your symptom exacerbation symptoms out-of-proportion to the intensity of the exertion? Yes____ No_____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    48. Is the severity and duration of your symptom exacerbation out-of-proportion to the frequency of the exertion? Yes____ No_____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    49. Is the severity and duration of your symptom exacerbation out-of-proportion to the duration of the exertion? Yes____ No_____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    50. Do basic activities of daily living like toileting, bathing, dressing, communicating, and reading trigger your symptom exacerbation? Yes____ No_____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    51. Do positional changes (e.g., your body position is shifted from the lying down to standing) lead to symptom exacerbation? Yes____ No_____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    52. Does emotional stress (good or bad) lead to symptom exacerbation? Yes____ No_____
    If you answered yes, do you experience the worsening of this symptom:
    All of the time ___Most of the time___ Sometimes___ Once in awhile___ Not Sure___
    If you answered no, is it because you are pacing to avoid experiencing this symptom:
    Yes_____ No_____

    53. Are there some instances in which the specific precipitants of your symptom exacerbation cannot be identified? Yes____ No_____

    54. Does the threshold for a precipitant to trigger your symptom exacerbation vary in terms of occurring at different times during your illness? Yes____ No_____
    55. Does pacing allow you to avoid your symptom exacerbation? Yes____ No_____
    56. Does pacing allow you to avoid only to a certain degree your symptom exacerbation? Yes____ No_____
    56a. If pacing helps you, list those symptoms that you are able to avoid or reduce an symptom exacerbation :__________________________________________

    57. If you are pacing, is it:
    57a. Based on body symptoms and reaction to triggers Yes____ No_____
    57b. Pacing with a heart rate monitor Yes____ No_____
    57c. Both of the above Yes____ No_____

    58. Are you able to exercise a little, but not near your pre-illness levels, but as long as you stay within certain limits, you feel fine? Yes____ No_____

    59. On a day you are recovering from symptom exacerbation, does it take less exposure that usual to a trigger to exacerbate your symptoms? Yes____ No_____

    60. Can you be sensitized to particular triggers so they cause an even more abnormal response over time? Yes____ No_____

    61. Is the severity of the reaction proportionate to how far beyond your limits you have gone (e.g. from a slightly sore throat in the morning if you have done slightly too much, to many severe symptom after really overexerting yourself)? Yes____ No_____

    62. If you have mild overexertion over several days, can this also produce an abnormal physical or cognitive response? Yes____ No_____

    63. Do you have cumulative abnormal physical or cognitive response with deterioration over weeks/months? Yes____ No_____

    64. Do you feel that you do not have a bounce back from symptom exacerbation to the pre-trigger event? Yes____ No_____

    65. Do you experience an intolerance to stimulation (whether physical, sound, smell, mental, tactile) which causes a transient (usually for minutes to hours) worsening in all or most symptoms, but which is often not prolonged if the stimulation is removed. For instance, reading or writing a letter or noise from neighbors? Yes____ No_____

    66. Do you have other triggers that provoke an abnormal physical or cognitive response such as:
    a.Chemicals. Yes____ No_____
    b.Mold. Yes____ No_____
    c.Foods. Yes____ No_____
    d.Emotional event's good or bad. Yes____ No_____
    e.Light. Yes____ No_____
    f.Heat. Yes____ No_____
    g.Cold. Yes____ No_____
    h.Noise. Yes____ No_____
    i.Visual overload. Yes____ No_____
    j.Vibration. Yes____ No_____
    k.Sensory overload. Yes____ No_____
    l.Drugs used for medications. Yes____ No_____
    m.Supplements. Yes____ No_____
    n.Don’t know. Yes____ No_____

    67. Do you have a delayed onset after going beyond your energy limits which is severe and prolonged, and might properly be termed a crash, collapse or deterioration. It also is delayed, usually 12-50 hrs after onset. Yes____ No_____

    68. Is the symptom flare/crash cumulative, so that you might feel bad post-activity, then feel really horrible 12<-> 24 <->48 hours later. Yes____ No_____

    69. If you are fighting off an acquired infection (flu, cold, bladder infection, vaccination, etc.), does this cause a worsening in all or most of your symptoms? Yes____ No_____

    70. Do you have an inability to handle levels of physical, mental and sensory stimulation that would not affect, or even be recognized by, a normal healthy person? Yes____ No_____

    71. Do you get progressively more ill if the mental/sensory stimulation keeps on continuing? Yes____ No_____

    72. Do you get progressively more ill in response to the single occurrence of mental/sensory stimulation? Yes____ No_____

    73. Does the length of time for recovery sometimes correlate with the severity of the symptom exacerbation? Yes____ No_____

    74. Does the time it takes to achieve any task significantly affected by the severity of the exertion response?
    Yes____ No_____
    75. Please let us know what safe limits you have implemented that help you reduce to some degree your symptom exacerbation? _________________________________________________
    Demographic and Other questions
    76. What is your age?

    77. What is your gender?
     Male
     Female
     Other
     Prefer not to answer

    78. To which of the following race(s) do you belong?
     Black, African-American
     White
     American Indian or Alaska Native
     Asian or Pacific Islander
     Other race (Please specify)

    79. Do you currently live in the United States?
     Yes  No

    80. Are you of Latino or Hispanic origin?
     Yes  No

    81. What is your current marital status?
     Married or living with partner
     Separated
     Widowed
     Divorced
     Never married
    Prefer not to answer

    82. What grade or degree have you completed in school?
     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

    83. What is your current work status? (Check all that apply)
     On disability
     Student
     Homemaker
     Retired
     Unemployed
     Working part-time
     Working full-time

    83a. If you are on disability, for what condition do you receive disability compensation?
    Please Specify

    84. If you are currently working, what work do you do and what is your job title?
    Current

    84a. If you are currently not working, what was the type of work you did and what was your job title?
    Most Recent
    84b. Prior to leaving the workforce, did you cut back either in number of hours worked or in
    work responsibilities. Yes______No________

    85. What have you been diagnosed with?
     Chronic Fatigue Syndrome
     Myalgic Encephalomyelitis
     Other (please specify) ______________

    85a. If you have a diagnosis, what year were you diagnosed?

    85b. What age were you when you were diagnosed? _______________

    85c. Who diagnosed you?
     Medical Doctor  Alternative Practitioner
     Self-Diagnosed
    1.If you were diagnosed by a medical doctor, was he/she an expert/knowledgeable of the disease? Yes____ No_____

    86. What is your current annual income in US dollars?
    Less than $24,999
    $25,000 to $49,999
    $50,000 to $99,999
    $100,000 to $149,999
    $150,000 to $199,999
    $200,000 to $249,999
    $250,000 or more
    Prefer Not to Respond

    86a. What was your annual income prior to becoming ill in US dollars?
    Less than $24,999
    $25,000 to $49,999
    $50,000 to $99,999
    $100,000 to $149,999
    $150,000 to $199,999
    $200,000 to $249,999
    $250,000 or more
    Prefer Not to Respond

    86b. What is your current annual household income in US dollars?
    Less than $24,999
    $25,000 to $49,999
    $50,000 to $99,999
    $100,000 to $149,999
    $150,000 to $199,999
    $200,000 to $249,999
    $250,000 or more
    Prefer Not to Respond

    87. How long ago did your problem with ME or CFS begin?
     Less than 6 months
     6-12 months
     1-2 years
     Longer than 2 years
     Had problem with fatigue/energy since childhood or adolescence
     Not having a problem with fatigue/energy

    88. Has your fatigue been present for more than 50% of the time since you became ill?
     Yes  No

    89. How would you describe the course of your ME or CFS illness? (Check one)
     Constantly getting worse
     Constantly improving
     Persisting (no change)
     Relapsing & remitting (having “good” periods with no symptoms & “bad” periods)
     Fluctuating (symptoms periodically get better and get worse, but never disappear completely)
     No Symptoms/I am not ill.

    90. Which statement best describes your fatigue/energy related illness during the last 6 months? (Check one)
     I am not able to work or do anything, and I am bedridden/completely incapacitated.
     I can walk around the house, but I cannot do light housework.
     I can do light housework, but I cannot work part-time.
     I can only work part-time at work or on some family responsibilities.
     I can work full time, but I have no energy left for anything else.
     I can work full time and finish some family responsibilities but I have no energy left
    for anything else.
     I can do all work or family responsibilities without any problems with my energy.

    91. Did you ever have a cardiopulmonary test which is often called an exercise challenge?
     Yes  No
    91a. What type of test did you have? ____________________

    91b. Did this exercise challenge show that you had normal or abnormal results?
     Normal  Abnormal

    91c. Were you asked to exercise on back-to-back days for this test?
     Yes  No
    92. If you know your maximum age predicted Heart Rate, over the last week, what percentage of the time did you spend over your maximum age predicted Heart Rate?
    0-25% ______
    26-50%______
    51-75%______
    76-100%______
    Don’t know______

    93. What percent of time were you 50% over your maximum age predicted Heart Rate?
    0-25% ______
    26-50%______
    51-75%______
    76-100%______
    Don’t know______

    94. Has your doctor checked for ataxia? Yes____ No_____.

    95. Have you noticed balance/gait problems? Yes____ No_____

    96. Have you or your doctor done a stand lean test or tilt table test and found you have Orthostatic Intolerance? Yes____ No_____

    97. The following items are about activities you might do during a typical day. Does your health now limit you in these activities? If so, how much? For each activity, please check the box for how much you are limited.
    Activities:
    Yes, Limited, A Lot Yes, Limited A Little No, Not
    Limited At All
    a. Vigorous activities: running, lifting heavy objects, participating in strenuous sports
    b. Moderate activities: moving a table, pushing a vacuum cleaner, bowling, playing golf
    c. Lifting or carrying groceries
    d. Climbing several flights of stairs
    e. Climbing one flight of stairs
    f. Bending, kneeling, or stooping
    g. Walking more than a mile
    h. Walking several blocks
    i. Walking one block
    j. Bathing or dressing yourself
     
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  2. Neunistiva

    Neunistiva Senior Member

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    Great. I managed to get to question 51 and left my observations on the Facebook page
     
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  3. Sasha

    Sasha Fine, thank you

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    I find this very confusing. 'All the time' that what? All the time that I exist? All the time that I experience the abnormal response to exertion?
     
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  4. Neunistiva

    Neunistiva Senior Member

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    I take it to mean all the time while crash lasts.

    But if you find it confusing it might be a good idea to make the comment on facebook so they know.
     
  5. Sasha

    Sasha Fine, thank you

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    I'm not on Facebook, I'm afraid.
     
  6. *GG*

    *GG* senior member

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    Is it available as PDF or Word document? I would print it out and mark it up, be easier for me to keep track that way on what I covered and notations, if any.

    GG
     
  7. shannah

    shannah Senior Member

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    @*GG*
    Would you be able to copy and paste it from above into a Word Document?
    If not, I'd be happy to do it for you.
     
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  8. *GG*

    *GG* senior member

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    Ah, yes I could, my bad :(

    GG
     
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  9. Wishful

    Wishful Senior Member

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    I'm suffering from yesterday's errands, so I'll put this off for later. Yesterday's drive did reveal one interesting thing: the increase in symptoms from driving and talking to people (cognitive) is different from physically-induced PEM. The former starts within hours, while the latter has a fairly precise and consistent 24 hr delay. Also, the former is blocked/treated by cumin, while the latter isn't. So, I don't know if there are two different types of PEM, or if there are two different pathways to the same symptoms. Has anyone else noticed differences in how they react to physical and cognitive triggers?
     
    *GG* likes this.
  10. Sushi

    Sushi Moderation Resource Albuquerque

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    Clarification question: so this questionnaire isn't "live" yet--he would just like our comments?
     
    *GG* likes this.
  11. Dolphin

    Dolphin Senior Member

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    His email address ljason@depaul.edu is on this website http://condor.depaul.edu/ljason/ , if you or anyone want to email him.

    Best to use a good subject line so the responses can easily be collated.
     

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