Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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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

    Okay, I need someone to write the sex question. I'm bound to get myself into trouble if I try :Sign giggle:
  2. kwietsol


    Super, Kim. Sorry I missed it. And thank you.
  3. _Kim_

    _Kim_ Guest

    Sue, I think this is important and added another PEM question (#6) that asks how long after activity do the symptoms come on. I think it might be worded a little awkwardly, though. Any ideas?
  4. _Kim_

    _Kim_ Guest

    Added to the PEM questions #5 an #6 (also added one for hand swelling)
  5. _Kim_

    _Kim_ Guest

    Question #2 now has uncoordinated eating and eye symptoms added.
  6. Lily

    Lily *Believe*

    Sent you a PM:Retro smile:
  7. _Kim_

    _Kim_ Guest

    I added these to #2 - misc. symptoms. Should they be in the PEM questions also?

    I think it's "geek" that's now fashionably preferred. Or "GLEEk" for those who have gotten hooked on the new TV series GLEE.

    You can borrow the jacket, but I'm not lending out my fishnets to anyone :eek::D;):Retro tongue::D
  8. _Kim_

    _Kim_ Guest

    look at question #25 and see how we can improve it.

    This would be a good question. Could you come up with the wording on that one?

    Added this to question #9.

    I don't see how we can add this in elegantly. There are already too many columns up top.

    Sure, if you want to write that question up, go for it.
  9. _Kim_

    _Kim_ Guest

  10. Sushi

    Sushi Moderation Resource Albuquerque

    Hey Katie,

    Re: the blue legs etc., I saw a dysautonomia specialist for years and this was seen as a typical symptom of blood pooling--sometimes in the abdominal area (splanchic) and sometimes in the lower extremities. There are thought to be numerous causes for this--including damage to norepinephrine receptors in the fine nerves (sorry about my poor medical terminology), and also some of us have Ehlers-Danlos syndrome, which affects collagen. Veins have a collagen component (they stretch too much and blood pools) as do vein valves. The valves are only supposed to work in one direction, but they can be prolapsed (just like heart valves) and leak blood in the wrong direction.

    In fact, I was thinking last night that a question about Ehlers-Danlos might be good. It is very common in those with mitral valve prolapse and that includes many of us. The most common type is usually called hypermobility syndrome. There is a significant association between this and dysautonomia (I have have both). The criteria for this diagnosis are clinical and there are websites with photos and the criteria listed so a self-diagnosis can be easily done. Most with hypermobility are very flexible, have long limbs, fragile skin, and are prone to dislocations or subluxations. The Wiki article on this isn't bad: http://en.wikipedia.org/wiki/Ehlers-Danlos_syndrome#Symptoms.

    This is another type of ED! ;) It is more known in the world of dysautonomia specialists than CFS specialists, but I'm sure a hefty subset here will have it too.

    Whatcha think, Kim?

  11. Cloud

    Cloud Guest

    Wow, great work everyone!! Thanks to Leaves, Kim, Advocate, and everyone putting this poll together. It's a great idea and is precisely what I was talking about back in early December on the "VIP Dx/WPI Combined PCR/Culture Poll" thread regarding fine tuning the info beyond just the Bell disability scale. I think we shall see some definite and different trends for those who are xmrv+ vs negative.

    Some great ideas going on creating this poll. I would only add the importance of having a way to answer questions considering changes over time. My symptoms were all Immune for the first 10 years and then progressed into being all Neuro 6 years ago.
  12. _Kim_

    _Kim_ Guest

    Just from my experience, I have a very large number of Ehlers Danlos patients in my practice who do not have ME/CFS. Their issues are: MVP (as you mentioned), joint instability/frequent dislocations, TMJ dysfunction, pelvic organ prolapse, diverticulosis/litis, and widespread pain due to the muscles needing to work overtime to support the lax joints. Also, ANS dysfunction sometimes happens - one of my more severe EDS clients breaks out in sweats if I use too much pressure (but he likes the way heavy pressure feels).

    I dunno. I think we can add it to the diagnoses question. We might learn more about the connection.
  13. Katie

    Katie Guest

    Thanks for this info Sushi, I've heard of blood pooling but never applied it to myself, I'll do a little research once my food kicks in, I'm getting the payback from travelling to London last Monday. I can rule out ED immediately as I'm exceedingly short and not at all flexible since I was little. I've never been able to touch my toes though I was getting closer when I was well enough for pilates! I think Ehlers-Danlos should be added as a comorbid condition as I know two people off the top of my head with it so I second this suugestion, all democratic like ;)
  14. _Kim_

    _Kim_ Guest

    Ross, do you have a suggestion of how we can implement your idea? I have a [Past] category in the symptoms questions, but you are not the only one that has requested more details on "how long ago in the past".
  15. Lily

    Lily *Believe*

    I have given a lot of thought to this one too, Kim, from the beginning. It's a toughie. I'll keep thinking on it and hopefully Ross or others will come up with some ideas. I think the changes are one of the most interesting aspects. It could be that when you test it a bit and see what the trends are in the "Past" category that we may be able to add some more precise questions to address that aspect.
  16. Cloud

    Cloud Guest

    Maybe something like the poll Nancy Klimas did, where you got a question, and then the option to select duration, current or resolved, etc. Example in my case:

    Symptom.........................Duration........ current/resolved...........for

    Swollen lymph glands..........10 years..................... X............... 6 years
    Orthostatic Intolerance........6 years.............X.........................6 years

    ps. Absolutely agree with Lily that these changes/progressions over time are very significant and may shine some light on important issues. I too have heard that it's a common progression of ME/CFS to go from Immune into Neuro, but I'm wondering for example if this is predominantly true for the xmrv+ pwc's? I'm also very intrigued with the xmrv/post exertional malaise connection.
  17. _Kim_

    _Kim_ Guest

    We could duplicate each symptoms question. The first would ask for severity (0-5) and the second could ask about duration. That's the only solution I can think of right now.

    ETA: I won't be around the rest of the day, but carry on with suggestions. Advocate might be online later to pick up where I left off.
  18. Lucie


    U.S. Southwest
    Eyes too weak to comb through all 18 pages, so don't know if cause of onset has been mentioned. (Made it through seven, though!)

    I would be interested in knowing what triggered people's onset, for example, viral illness, bacterial illness, anaphylaxis, surgery, immunizations, emotional stressors, car accident, etc.

  19. julius

    julius Watchoo lookin' at?

    Looking very good!! Does anyone think it's nearly ready to put up yet??

    Kim, maybe you could create a second poll with just one question asking if people think it's ready yet. Run it once a day or so. If you got say 90-95% yes (off the top of my head) then put it up for good.

    What do u think?
  20. Nina

    Nina Senior Member

    I would like to apologize if this has been mentioned, but this thread is far to long for me to read.

    Has neuropathic pain and paraesthesia (tingling, numbing sensations) been included?

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