Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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XMRV Positive? What are your symptoms/medical history?

Discussion in 'XMRV Testing, Treatment and Transmission' started by leaves, Jan 14, 2010.

  1. _Kim_

    _Kim_ Guest

    Absolutely, we can have the exact same survey for XMRV negatives (easy peasy).
  2. hensue

    hensue Senior Member

    That is a great idea
  3. _Kim_

    _Kim_ Guest

    The Results page looks kind of crappy, but you can export the survey data into Excel and then create charts, etc from that
  4. Advocate

    Advocate Senior Member

    Hi Kim,

    Something like this?

    Acute onset
    Gradual onset
    Sick less than 1 year
    Sick from 1 to 5 years
    Sick 5 to 10 years
    Sick 10 to 20 years
    Sick 20 to 30 years
    Sick more than 30 years
    I have gotten better during the past year.
    I have gotten worse during the past year.
    I have stayed about the same during the past year.
    I now live in Asia
    I now live in Africa
    I now live in North America
    I now live in South America
    I now live in Europe
    I now live in Australia
    I am male
    I am female

    Does anyone post from Africa and Asia? I hated to leave them out.
  5. Advocate

    Advocate Senior Member

    I really like this idea!
  6. flybro

    flybro Senior Member

    Looks fanatstic to me, whats syncope
  7. _Kim_

    _Kim_ Guest

    hanchuchu posts from China. We need Central America also.

    I'll put the demographics in now.

    I still need the symptom list to fill in the rest of the questions, or if you want to do that part, I'll PM you the password and you can edit it yourself.


    I made the demographics a separate page (page 2)

    Sample XMRV Positive Survey
  8. _Kim_

    _Kim_ Guest

    Syncope (SIN'ko-pe) is temporary loss of consciousness and posture

    I'm just screwing around right now. We'll get it looking good.
  9. Advocate

    Advocate Senior Member

    This is a work in progress! Here's the symptom list I have so far, but it needs to be continually changed and improved until we get it right. Some terms are not clear, or are redundant or are rare. I'm copying it below so everyone can help.

    What symptoms do XMRV+ people have in common?

    1. Abdominal pain
    2. Aching, burning shooting pains anywhere in the body
    3. Alcohol intolerance
    4. Allergies
    5. Alternating diarrhea and constipation
    6. Arthralgia without joint swelling
    7. Ataxia (unsteady gait, inability to coordinate voluntary movement)
    8. Auditory processing dysfunction
    9. Bladder pain
    10. Bloating
    11. Blood pressure drop after many minutes of standing
    12. Blood pressure drop immediately upon standing
    13. Constipation
    14. Diarrhea
    15. Difficulty retrieving words
    16. Difficulty sitting up or standing after minimal physical or mental exertion
    17. Difficulty with mathematics
    18. Dizziness, especially when standing still
    19. Dyslexia
    20. Easily confused
    21. Easily distracted
    22. Excessive heart rate during 10 minutes of standing still
    23. Excessive urination at night
    24. Fainting periodically
    25. Fatigue that is incapacitating, relentless, unrelieved by sleep
    26. Fluctuations in body temperature
    27. Fluctuations of cold and hot in different parts of the body
    28. Flu-like or hangover feeling after minimal physical or mental exertion
    29. Forgetfulness (primarily short-term)
    30. Frequent awakenings
    31. General flu-like feeling
    32. Generalized muscle pain
    33. Headaches especially when standing still
    34. Hypersensitivity to light
    35. Hyper-sensitivity to medications and their side-effects
    36. Hypersensitivity to motion
    37. Hypersensitivity to odors
    38. Hypersensitivity to sound
    39. Hypersomnia (excessive sleeping)
    40. Impaired mental abilities after minimal physical or mental exertion
    41. Impaired speech after minimal physical or mental exertion
    42. Inability to block out background noise & focus on conversation
    43. Inability to cope with fast-paced tasks
    44. Inability to focus vision and attention
    45. Informational overload with inability to multi-task
    46. Intestinal irregularities
    47. Intolerance to extremes in air temperature
    48. Irregular breathing especially when standing still
    49. Irritable bowel syndrome
    50. Jerking or twitching during sleep
    51. Lightheadedness especially when standing still
    52. Liver pain
    53. Loss of adaptation to situations of overload
    54. Loss of balance and clumsiness
    55. Loss of muscular coordination
    56. Low body temperature
    57. Lymph node tenderness (cervical or axillary)
    58. Mild fever
    59. Muscle twitching
    60. Muscle weakness
    61. Muscular weakness after minimal physical or mental exertion
    62. Nausea
    63. Nausea especially when standing still
    64. Neuropathy (damage to nerves)
    65. New food sensitivities
    66. New onset headaches
    67. Night sweats or other sweating episodes
    68. Nightmares or agitated dreams
    69. Non-restorative sleep
    70. Numbness
    71. Occasional dyslexia
    72. Occasional slurred speech
    73. Brain fog (overall feeling)
    74. Pain in lower abdomen
    75. Painful urination
    76. Palplitations with or without cardiac arrhythmias
    77. Prostate cancer
    78. Recurrent sore throat
    79. Shooting pain
    80. Shortness of breath
    81. Slow information processing
    82. Slow response to verbal stimuli especially when standing still
    83. Sore throat
    84. Subnormal temperature
    85. Sweating especially when standing still
    86. Temporary immobilization from overload
    87. Temporary paralysis after minimal physical or mental exertion
    88. Tender lymph nodes
    89. Tinnitus (ringing in the ears)
    90. Upper spine and neck pain
    91. Urgency to lie down especially when standing still
    92. Urinary frequency
    93. Variations in sleepiness and energy throughout the day
    94. Visual changes when standing
    95. Wasting
    96. Weakness
    97. Weight change with loss of appetite or abnormal weight gain
    98. Worsening of symptoms under increased stress (physical or emotional)

    I see that you were putting symptoms into categories. I think it's too soon to do that. If we simply have a long list of symptoms, can it be broken up with spaces, say, every ten items?

    I do think we need categories, though, and will suggest a couple in a minute.
  10. Advocate

    Advocate Senior Member

    I was trying to keep the list shorter by listing only continents. I believe Central America is generally considered to be part of the North American continent. Nice to hear from hanchuchu!
  11. cfs since 1998

    cfs since 1998

    Yes, and I studied statistics in college.

    If we all agree on what questions to ask I could implement something in PHP and have Cort upload it to the site. I believe we could also integrate it to the vbulletin forum user database so that we can prevent people from taking it multiple times and have people take it again after a period of time and compare it with the earlier results.

    If we get at least a few hundred people the data could be analyzed with various statistical methods.

    I'm not sure how the out-sourced survey companies work, how do they present the results to you?
  12. Advocate

    Advocate Senior Member


    Hi Kim,

    I'd like to suggest a three other categories, which would make six categories in all, so far:

    David Bell disability scale survey
    The one where we ask people what continent they live on
    Positive tests for pathogens
    Other positive test results

    I'd like to emphasize that this is VERY rough. I'll paste the three categories I'm suggesting below, along with some samples of suggested entries.

    Positive Tests for Pathogens:
    Bartonella, etc.
    Chlamydia pneumoniae

    Other Positive Test Results:

    24-hour Holter monitor results with oscillating T-wave inversions and/or flat T-wave
    Autonomic response testing
    Direct resonance testing
    RNaseL abnormalities
    Tilt table test

    Hashimotos thyroiditis
    Heart disease
    Lyme disease
    Multiple chemical sensitivity
    Orthostatic intolerance/POTS/NMH
    Primary immune deficiency disease
    Restless legs syndrome

    As for the diagnoses, yes, I know this is an XMRV survey, but I think everyone has had at least one diagnosis.

    This might be a little nuts, but I really want to know if anyone has tested positive for Selective IgA Deficiency. It's one of the Primary Immune Deficiency Diseases, it's a plasma test, fairly common, can be inherited or acquired. If it's acquired, and the B cells are supposed to make IgA, and if they don't...has XMRV infected the B cells? I offer this to explain why I am so interested in making the survey comprehensive.

    Gotta go.
  13. hensue

    hensue Senior Member

    Diagnosis fibromyalgia
  14. joyscobby

    joyscobby Senior Member

    This is realy good list but a few points I saw but may not be important or mis reading as long list

    9 & 75 very similar

    nothing about week bladder during day

    nothing about constipation alone or the other iI cannot spell alone. some people have one or the other alone.

    reoccurring fungal infection eg athletes foot

    hip and pelvic pain

    neck pain like whiplash from keeping head up.

    nothing about visual flooters zig zag things

    Gyne problems eg endometriosis (seems common) may be others

    long term memory (mine is getting worse)

    17 arithmetic not mathematics as 1 is basic counting other is more complex geometary triganometary and algeraba.
    technical name is dysnumeracy.

    ignore any that are there I am useless with lists. oh no another;):D
  15. flybro

    flybro Senior Member

    Lymph node tenderness ?

    is this the swollen glands in my neck, and the achey feeling in my armpits.

    I think you are all brilliant.
  16. Hysterical Woman

    Hysterical Woman Senior Member

    East Coast

    Hi Kim,

    I might have missed this, but what about something concerning jobs where you were working when you became ill? I have mentioned before that I was working at a hazardous waste disposal facility when I became ill - obviously a lot of chemical exposure. But what about people who might have been working in a chemistry lab or a hospital??

    I hope that you know you are planning the survey of the century!:victory:

    Take care,

  17. fds66

    fds66 Senior Member

    If you are going to ask about specifics and test results there needs to be a way to say you haven't been tested because many of us (especially in the UK) haven't had tests for any viruses or immune system tests or autonomic tests. All I've ever had are the standard blood tests.
  18. Lily

    Lily *Believe*

    Yes :D, looks to be getting a bit unwieldy, but I think as Kim said it can be edited and critqued before finalization. We have time on our hands after all, and need something to do for the next few years :rolleyes: until some studies are replicated (or not), a causal link is determined (or not), new discoveries are made and clinical trials are initiated............lots and lots of time to fill, especially for those of us who spend the majority of our time horizontally.:D
  19. Advocate

    Advocate Senior Member

    What an abundance of riches we have here!
  20. Hope123

    Hope123 Senior Member

    OK, I haven't gone through this whole thread but whatever symptoms you include on the list, please include those stated in the Canadian Consensus Criteria.

    Also, for diagnoses, I would include anxiety and depression because people do develop this in response to CFS/ME whether as a result of their external cirucumstances or possibly because whatever pathology is at the bottom of this also affects the brain. (There are people whose anxiety improved or resolved after treatment with antivirals.)
    And in studies of CFS, other common conditions showing up include interstitial cystitis, irritable bowel syndrome, possibly other auto-immune phenomenon.

    A question about how long people have been sick (from the beginning to now, including periods of remission) and whether they have an overall worsening, improving, or waxing/ waning pattern.

    It's funny I'm suggesting more stuff. The first rule of surveys: keep it short.

    A resource for surveys which is free in limited form Survey Monkey:

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