Discussion in 'XMRV Testing, Treatment and Transmission' started by leaves, Jan 14, 2010.
Absolutely, we can have the exact same survey for XMRV negatives (easy peasy).
That is a great idea
The Results page looks kind of crappy, but you can export the survey data into Excel and then create charts, etc from that
Something like this?
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.
I really like this idea!
Looks fanatstic to me, whats syncope
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
Syncope (SIN'ko-pe) is temporary loss of consciousness and posture
I'm just screwing around right now. We'll get it looking good.
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
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
11. Blood pressure drop after many minutes of standing
12. Blood pressure drop immediately upon standing
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
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
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
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
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.
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!
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?
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:
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
Tilt table test
Multiple chemical sensitivity
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.
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
Lymph node tenderness ?
is this the swollen glands in my neck, and the achey feeling in my armpits.
I think you are all brilliant.
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:
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.
Yes , 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 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.
What an abundance of riches we have here!
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 http://www.surveymonkey.com/is Survey Monkey:
You can also try a Google Site Search
Separate names with a comma.