1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Join the National PR Campaign for ME/CFS: Power to the Patient (P2tP)
Have you had enough of all the neglect and abuse of ME/CFS patients? Gabby Klein says now is the time for a National PR Campaign for ME/CFS to impress a change. Join the Patient Revolution to restore power to ME patients ...
Discuss the article on the Forums.

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

    Oh, I forgot to mention that the first question (which is soon to become #2 after I add the testing questino) is where I put all of the symptoms that didn't fit clearly into other categories. Suggestions on where to move them would be great.

    Okay, the test question is in.

    Here's the Updated Survey
     
  2. Dr. Yes

    Dr. Yes Shame on You

    Messages:
    867
    Likes:
    22
    Hey Kim,

    Just had a look at the New and Improved Survey -- Very cool! (If a bit hard on the eyes..I thought one of the questions for the visual section should be "Is reading this hurting your brain?" :D)

    A couple things that I think should be in there (did you already mention this?..): New allergies (not just to foods), incl. mold allergies, perhaps whether any of those have been verified by testing, and perhaps whether those worsen at least some of the other ME/CFS symptoms.

    Under GI stuff: Acid reflux, abdominal discomfort (not just pain or bloating)

    Under pathogen tests, maybe a question at the end as to whether you have been tested at all. I think that's important since many people, esp. but not exclusively in the UK, have never been tested for anything except maybe EBV. Otherwise I don't know how we would tell accurately what percentages had "co-factors".

    (Btw, I've always had a problem with the activity scales, even the Bell scale, for the bottom end of the activity spectrum. Seems like there should be one more category between the lowest and second lowest, i.e. not entirely bedridden but still unable to take care of self in most respects. Minor point, I guess..)
     
  3. julius

    julius Watchoo lookin' at?

    Messages:
    785
    Likes:
    5
    Canada
    Kim,

    for section 2;

    'fast paced tasks' and 'situations of overload' seem like cognitive to me
    the rest looks possibly endocrine except hives and rashes. But maybe a sort of miscellaneous section would be good. Because no one really knows how any part of the disease really works, it's hard to know what's actually causing each symptom.

    I hope I'm being helpful here and not just getting in the way. This is just such a cool thing I'm getting a bit excited.
     
  4. Lily

    Lily *Believe*

    Messages:
    665
    Likes:
    4
    Definitely agree, and especially about the Bell scale, FWIW:Retro smile:
     
  5. _Kim_

    _Kim_ Guest

    There are several styles that can be selected. I just changed it to a darker grey one. Is this any better?

    All good suggestions. I'll add them tomorrow, including another rating for the Disability Scale: - a 5 for: I am virtually bedridden, but can still wipe my own butt :eek:. Seriously, if you come up with a description for a level 5, I'll add it in.
     
  6. _Kim_

    _Kim_ Guest

    No julius, you are hardly getting in the way. This is exactly the kind of feedback we need to get it in good shape. And this is collective creating at its best. Plus, Advocate made me promise that we wouldn't release it LIVE until it was perfect!!

    I just grabbed symptoms and threw them into categories. What the heck do I know?
     
  7. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    55
    It slowly percolated through my brain that I hadn't expressed this, I came back to do so, and voila! You had done it for me. Ta

    I know. But we're becoming an educated bunch of sickies. With all the info and expertise we bring together, my guess is that this survey is the most up-to-date piece of literature and compiles all know research and diagnostic tools. There aren't that many specialists out there that know as much as our combined super-network brain. Hopefully xmrv will change that and this will be common knowledge soon.

    Oh - sorry - it's so filling my mind that I project that everyone already knows - the up-coming Invest in ME May 12 2010 conference "'A New Era in ME/CFS Research" with

    Mikovits, Kerr, Klimas, Cheney, Chia, Huber.......

    and a focus on educating healthcare providers

    I would appreciate that.

    I didn't mean you silly - I meant someone from the outside.

    ----------

    I am completely behind having 3 surveys
    a) WPI- approved testing - tested positive
    b) WPI-approved testing - tested negative
    c) not tested yet (think it would be good for people with results pending to hold off until the results are known)

    and if there a a number of people who have been tested by non-WPI approved testing, then we could add 2 more to cover those results.
     
  8. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    55
    I went over the current version - looking great!

    I think we (the royal we you notice) should add gall bladder and pancreas problems as many people report them - not sure about kidney.

    Sorry - tired - did you have migratory pain, even from muscles to joints?

    And - agree that the bottom end of the Bell scale is off. From 30 down it doesn't make sense to me or reflect the stages and (in)capabilities I've had.

    And I am serious about flogging it once we're done - so let's start thinking of who would be best to bring it to the world.

    if:)
     
  9. kwietsol

    kwietsol

    Messages:
    40
    Likes:
    0
    First degree relatives

    Kim -- Great survey. Thank you.

    How about adding a question about first degree relatives (husband, parent, child, siblings) with CFS? And perhaps also with prostate cancer, autism, atypical MS, fibromyalgia, lymphoma, leukemia? If we get a number of hits on these diseases, we might attract the interest of additional researchers.
     
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,054
    Likes:
    6,022
    Albuquerque
    Hi Leaves,

    Here is a description:

    Direct Resonance Testing (excerpted from another practitioner's description of Klinghardt's A.R.T.) http://www.naturalworldhealing.com/integrated-biological-evaluation.htm#DRT

    Another vital piece of the puzzle is provided by direct resonance testing. [This has been extensively researched in the U.S. and Japan, as a result of the labors of Yoshiaki Omura, M.D., of New York City -- http://www.icaet.org/symposium.html and http://www.baobab.or.jp/~oring/e_basis.shtml.] The Biological Law of Identical Substances states, If there is an identical substance outside the body as there is inside the body, a stress reaction in a muscle is created. When samples of various organisms are placed directly over areas in the head, face, jaw, TMJ, or other body parts, and if that organism is present in any of those areas, a muscle is weakened. The presence of intracellular organisms that are hidden from most tests are thus revealed and a treatment is also revealed in the same manner.
     
  11. julius

    julius Watchoo lookin' at?

    Messages:
    785
    Likes:
    5
    Canada
    I just noticed theres no endocrine section. Endocrine dysfunction is one of the main canadian consensus criteria. Cortisol(hypo) is a well documented one. Testosterone, estrogen.
     
  12. Dr. Yes

    Dr. Yes Shame on You

    Messages:
    867
    Likes:
    22
    OK, checked out the new gray color and it's too dark... I know, whine whine whine... :ashamed:

    I agree with Julius that since we don't know the cause of some of these symptoms (and since things like dizziness can be caused by a number of systems) it's good to leave #2 nonspecific.

    "Worsening of symptoms under increased stress (physical or emotional)" - maybe separate this into two questions? Might be interesting to see if there's a noticeable difference... Btw, what are we defining as physical stress - exertion again?

    A few more potential addtitions to bother you with: :Retro tongue:

    "Worsening of symptoms after an additional/ transient infection (cold, flu, or other)?"

    Along with the one already in there about longest remission, what about:
    "Longest exacerbation in response to a trigger"

    "Inability to exercise (aerobically or anaerobically)"?

    For #5 (post-exertional symptoms):

    -Severe exacerbation of most or all ME/CFS symptoms
    -Feeling extremely ill or 'toxic' (not just fluey; I've heard people use the term 'poisoned' a lot).


    What do y'all think?

    By the way, Kim is so not a Nerd. More like a Techno-Ninja.

    Or a Secret Agent Girl:

    00smiley.gif



    (uhh.. that's not too easy on the eyes either, is it?)
     
  13. _Kim_

    _Kim_ Guest

    I went in and changed the color again (I decided the grey was too dark). And I also added the 0-5 scales plus a 6th category for [Past] symptoms.

    I haven't added or moved any of the symptoms that have just been mentioned, but I'll get that stuff in tomorrow.

    I also think we should rewrite the Disability Scale completely (or at least the lowest scoring categories).

    ETA: I am going to change the color one more time. It shows up differently when it's published than what I see as I'm editing it. I think I found a medium tone that might work. Here's the latest
     
  14. _Kim_

    _Kim_ Guest

    Keep 'em coming julius. Could you put those into question format for me, so that I can plug it right in? I'm not too familiar with the endocrine dysfunction symptoms.
     
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,054
    Likes:
    6,022
    Albuquerque
    Kim, Advocate and the Super-Wonderful Team!

    It's looking really good!

    Just wondered, libido anyone?:Retro redface:

    Sushi
     
  16. _Kim_

    _Kim_ Guest

    I'm not sure about the new color, either. It's called Sand, but it looks more like puke. Easier on the eyes, I think though.

    Got it.

    Wanna try and craft better wording for this?

    Noted. These will be added.

    Koan calls me the Secret Weapon
     
  17. Lily

    Lily *Believe*

    Messages:
    665
    Likes:
    4
    That's a good question Sushi - a vague vague memory..............:sad::tear:
     
  18. _Kim_

    _Kim_ Guest

    I was thinking ED as well. Some of our fellas might have the want but not the means.
     
  19. cfs since 1998

    cfs since 1998 *****

    Messages:
    577
    Likes:
    4
    What would the results look like?
     
  20. Lily

    Lily *Believe*

    Messages:
    665
    Likes:
    4
    Sure, also sometimes you have libido and things are working, but just can't quite get there, ya know? Seems to be a common complaint as well. Gosh maybe we should reverse this questionnarie and just see what works. Do we have any parts that work right?:confused:
     

See more popular forum discussions.

Share This Page