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Lessons from ME/CFS: Finding Meaning in the Suffering
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Help us with the XMRV Survey - feedback, proof-reading, and comments needed

Discussion in 'XMRV Testing, Treatment and Transmission' started by _Kim_, Jan 24, 2010.

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  1. Advocate

    Advocate Senior Member

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    My computer modem was broken for two days, and I think someone must have fixed the link in my signature for me during that time. The link works for me now. Does it work for you?
  2. _Kim_

    _Kim_ Guest

    Hi Rachel,

    I won't be taking comments for all that much longer. Maybe another day or two. Then I'll incorporate the suggestions in like I did on Sunday.

    I promise not to wear myself out with this. I'll take my time getting the suggestions in once I close the draft version of the survey.

    Thanks for looking out for me.
  3. julius

    julius Watchoo lookin' at?

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    Hey Advocate,

    Yep, face recognition is a highly complex process, it requires highly precise and high speed cognitive processing. So any disease affecting cognitive processes could potentially produce this. I'm sure you know this already though.

    For those of you who do have this, do you also have any of these symptoms;

    -difficulty understanding social cues or social interaction?
    -tendency to focus intently on personal topics of interest (ie; dinaosaurs, trains, XMRV;))
    -difficulty expressing thoughts or ideas, or understanding when someone explains their thoughts or ideas to you

    I am very curious about what connection there may be between autism(asperger) and cfs.

    Damn you WPI for making me think about this!:tear:
  4. Advocate

    Advocate Senior Member

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    I'm happy that you are focusing on XMRV! I assume you are familiar with the connections naturopath Amy Yasko makes between autism and CFS. I've wondered if we should have a Single Nucleotide Polymorphism (SNP) section. A lot of people with CFS have done the genetic testing that Yasko recommends (related to methylation, I think), and they all know their SNPs--homozygous and heterozygous--by heart. I know that some of these people will also be getting XMRV testing.

    What do you (and others) think? Should I try to come up with a way of formatting a question on genetic test results?
  5. Advocate

    Advocate Senior Member

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    I am worried by how tiring it was for some people to go through the survey.

    I'd like to see a black box warning somewhere near the top, with three or four sentences. Something like this:

    1. A healthy person can finish this survey in about X minutes.

    2. If you are ill, please take frequent breaks (or rests). (Or please rest as needed). (Or take up to a week to complete the form.) (Or you can take as many days as you like to complete the form; the results will not be X until you press X.) (Kim will know.)

    3. Your input will not be lost. (Or something like that. Kim explains it somewhere, but I cant find it.)

    (I think we need reassurance that input will not be lost for a certain period of time because havent we all had the experience of putting items in an online shopping cart, going away, and coming back to find the shopping cart is empty because our time limit has expired? Or copying all those itty-bitty numbers from a credit card onto a form, and making some sort of mistake and being told to do it AGAIN?)
  6. mezombie

    mezombie Senior Member

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    In question 13, "lightening" should be changed to the correct spelling, "lightning".

    Sorry if this has already been brought to your attention.
  7. Advocate

    Advocate Senior Member

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    Would this be under Other #17, CURRENTLY, I experience: ?

    Arms weaker when standing or sitting than when lying down
  8. julius

    julius Watchoo lookin' at?

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    I'm not familiar with her work actually. I will look into it. But I definitely have't had any genetic testing done.
    From what you explained though, it sounds like it could be a good thing to include in the poll. You never know, it could turn up something very interesting.
  9. _Kim_

    _Kim_ Guest

    Advocate, that would be great if you would write a genetic testing question.

    I haven't been tested, but I definitely have some Aspie traits. I have very poor facial recognition. Put on a hat and I don't know who you are.

    One of my Aspie traits is being able to disseminate and organize information pretty accurately. I did misspell lightning and added a couple of duplicate entries, but overall, I made very few errors in the massive update to the Survey. On our other thread on this topic, someone asked if I really did have CFS. I do, but some of my Aspie-like brain functioning is still working (though I'm not as sharp as I used to be).
  10. _Kim_

    _Kim_ Guest

    This is a great idea. We'll add it into the next version
  11. mezombie

    mezombie Senior Member

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    You're doing a fabulous job, Kim!

    I hate to say it, but that Aspie trait is very helpful in this case! (Not that I'm happy you have Aspberger's, of course!)
  12. _Kim_

    _Kim_ Guest

    Thanks marie.

    I'm not 100% Aspie - I have an overdeveloped sense of empathy - if empathy can be called a 'sense'?

    Previously, I never would have released the survey in the shape that it is in. I would have proof-read it, tinkered with it, and that part is tiring. So that's why I just added the stuff fast and asked everyone else to look at it. I'm learning...
  13. julius

    julius Watchoo lookin' at?

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    Kim,

    Should we be making all our comments about the poll on this thread now, or are we still using the old thread as well? What's easier for you and advocate and CFS since.
  14. _Kim_

    _Kim_ Guest

    I'll check both threads. No worries. We also have comments that survey takers left on the 'forms'. I'll pull from all 3 sources. There's not much to add, really. We're in good shape.
  15. shiso

    shiso Senior Member

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    Kim, Thank you for this monumental effort - I think the survey looks great.

    I just posted my comments in the boxes/free space by "taking" the survey. One thing I wanted to highlight (I also wrote it in the survey) is adding "Difficulty walking" to the list of current physical symptoms (I think it's #17).

    Many CFS patients can't walk very far without a relapse; the more severely affected are at least partially reliant on wheelchairs, and even for the moderate to severely affected who can manage without one, they can only walk for very short distances at a time. Yet difficulty walking is a common disabling symptom among ME/CFS patients that is rarely mentioned as a CFS symptom in the literature. (I realize it's covered in part in the HFME functional capacity scale at the end of the survey but it would be nice if "Difficulty walking" could get recognized up front as an individual, physical symptom in the survey)

    Thanks again for your generosity and time for working on this!!
  16. Marco

    Marco Old blackguard

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    First off. I think this will be a fantastic resource. I don't think I've ever come across a survey on ME etc that was compiled by the patients themselves. Usually the information collected is narrowly focused or the questionnaire is a fait accompli like last year's ME Association one. I'm convinced that they usually fail to capture a lot of possibly critical information because they don't have the illness or the information is lost in translation. Excellent work all round.

    I'm a little confused though as to why you need seperate questionnaires for those testing positive and others?

    Presumably the idea is to gather as much data on the three groups as possible to allow for comparisons to be made?

    Leaving aside the potential testing issue of false negatives/positives, surely valid comparisons can only be made if the same survey instrument is used. Could the XMRV test questions not just be incorporated into one questionnaire?

    I'm also not sure what is being compared here. Is there an expectation that those testing positive are a discrete sub-group with different etiololgy and symptoms?

    Even assuming the test is fully reliable, unfortunately the comparison is only between those who have been tested and have a positive result and those who have a negative result which are small numbers. We can't say anything about those not tested.
  17. sproggle

    sproggle Jan

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    Hair loss on ankles =Raynauds?

    Fantastic survey. I can also relate to the face blindness but would never have thought of/remembered it myself if simply asked to list my symptoms.

    Marco, Hair loss on the ankles is interesting. My brother has Raynaud's syndrome and has this symptom of hair loss on the ankles (hair loss is a less-known problem associated with Raynaud's).

    Pretty sure most of use here have the more obvious symptoms of Raynaud's which are painful and cold extremities that can also change in colour. My brother usually goes blue but extremeties can also go pale or even turn red.
    Of course us ladies not being hairy to begin with wouldn't have this visible change in hairyness of ankles! :D

    :sofa: Sure I had summat else to say but it's gone for now....
  18. FernRhizome

    FernRhizome Senior Member

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    Hey Folks: Is it still possible to add a couple more questions to the survey????????? Here's the two I' d love to add:

    1) Is it hard to relax your skeletal muscles (when I go to bed it can take two hours or longer for my skeletal muscles to realax)

    2) Question for women: Have you experienced any unusual breast growth, especially from particular foods, supplements, and medications
    (this is a bizzare but real symptom that has happened to a number of us!)

    ~FernRhizome
  19. garcia

    garcia Aristocrat Extraordinaire

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    It's a very minor symptom which hardly shows its head in day-to-day life. The only reason I remembered it was this recent bbc health article:
    http://news.bbc.co.uk/1/hi/magazine/8474827.stm

    Andrew Cutler (author of "Amalgam Illness") says hair loss on ankles for men is one of the main outward signs of adrenal fatigue. Certainly my hair loss is partially reversed by taking DHEA (which I'm very low in).
  20. ~FernRhizome

    That could incude the men too. (Breast Growth).

    Man Boobs or 'Gynecomastia' (real breast tissue, not fat) can be caused by hormone disrupting/ oestrogen mimics in plastic and possibly/theoretically regardly XMRV, retroviruses.

    Also as we age, growth hormone lowers and that in contribution with a lower thyroid can cause breast growth in men. It's postulated people with ME/CFS have a lower growth hormone level and so may end up earlier with a 50yrs old 'mans' chest and 20 or so. Healthy men get this, the reason is unknown.

    One thing to note is the heavier people in this world have the larger booblets because fat is directly linked to oestrogen receptors.
    So if one is in ownership of a large (r) chest when sick with ME/CFS than before ME/CFS it would interesting to note the person's weight or BMI.

    A theory could be if XMRV loves Oestrogen, do booblets (my patented name, sorry) enlarge if one is infected with XMRV?

    Because the survey is anonymous, men could answer without fear of embarassment. And yes, I shop at Victoria's Secret.
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