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XMRV Buzz - Take a Deep Breath/the Big XMRV Meeting, Singh On XMRV, Sample prep?

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Cort, Nov 5, 2010.

  1. X-Man

    X-Man X(MRV) Man to the rescue

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    I have had to learn this kind of lesson the hard way! A couple of years ago I was going to soak some clothes in the laundry room sink. It takes about 5 minutes for the sink to fill with hot water; plenty of time to use the restroom, right? Well I did use the restroom within that 5 minute period. A couple of hours after using the restroom I remembered I had left the sink on! The laundry room (which is huge - the size of a good sized bedroom) and storage room next to it were completely flooded. The large storage room had a bunch of cardboard boxes filled with stuff in them so I ruined a bunch of stuff, including the washing machine.
  2. X-Man

    X-Man X(MRV) Man to the rescue

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    It's interesting to see how this disease effects our cognitive abilities a bit differently. For me I get a lot more brain fogged & also fatigued by outgoing information/communication than I do with incoming information/communication. Here is the order, from least brain foggy & least fatiguing to the most fatiguing activities in me:
    1. reading (getting info via print/computer)
    2. People talking/tv/radio (getting info verbally)
    3. Writing info (giving info via print/computer)
    4. Talking to others (giving info verbally)
    For me there is a big gap between 2 & 3. It is hard for me to think of things to say out loud or on the computer. Communicating with others is fatiguing & can give me pem.

    Thank you for the encouragement. However I know in my case that I have been a lurker because this disease has messed with my ability & energy to communicate much on the forum. It is much easier to lurk to avoid getting pem & increasing my other symptoms. I wonder if there are other lurkers out there that would pay a price if they were to join & have to think of things to write.
  3. George

    George waitin' fer rabbits

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    Thank you X-man I needed a good laugh. People often think I'm joking about using the leash to tie myself to the stove but I've nearly set the house on fire twice because I wandered off and ended up pruning the rose bushes or cleaning the toilet and forgeting about the soup or eggs on the stove until the smoke detector goes off. (big grins) Just leash myself to the stove and I've got enough room to sit at the table while the water boils and keeps me from wandering off.

    Yeah but just think of all the fun of sharing and making others feel good to know they are so not alone. (big grins) . . . . . . . . . . .Now why am I tied to shower stall again????
  4. Mark

    Mark Acting CEO

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    Thanks for all that X-Man, some really valuable additions to the picture there.

    The example you gave about running the sink and then forgetting about it rings so, so true with me. I'm always trying to place mental notes for myself about things like that, and then forgetting all about what I had started until a few hours later. Definitely something else that I hadn't registered as a cognitive impairment, until you wrote that.

    The list you give is interesting too because you seem to be the exact opposite of me in those respects - struggling with output rather than input. That could perhaps be explained just by different parts of the brain being affected. But it reminds me of the "don't catch colds" vs "never catch colds" subgroups. We seem to have both extremes of so many things. That's where the patient data survey could get interesting: if we could identify clusters, and find associations between them, we could really find something interesting there...watch this space...

    And your reminder about the difficulty for some people to post is important as well, but I'd just make one counter-observation on that. Lots of people who post here make spelling mistakes, suffer from brain-fog, and struggle to express themselves...but they find a community that is extremely understanding of those issues, and makes a special effort to hear those voices that struggle to express themselves. Between those who struggle to write and those who struggle to read, there's plenty of opportunity for confusion of course. But also there's a great opportunity for us to complement each other as well, and to learn from each other, and because of our shared understanding we can help each other to communicate in a way we just can't do when we're out in the wider world.

    By understanding our similarities and differences we all learn more about ourselves. This little discussion is a great example of that.
  5. urbantravels

    urbantravels disjecta membra

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    My favorite escapade was when I locked my keys in my car....in front of the drive-up mailboxes at my neighborhood post office.:eek: I just hate the kind of drive-up mailboxes that are on the right, meaning you have to get out of the car if you don't have a passenger...

    There followed a very awkward hour of me sitting on the curb waiting for the locksmith (at least I had my phone in my pocket, everything else including wallet and bag was in the car) and getting the stink-eye from everyone who drove up wanting to use the mailboxes. Which turns out to be a surprisingly high number of people per hour.
  6. X-Man

    X-Man X(MRV) Man to the rescue

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    Your welcome. Oh that's scary 'bout the stove.

    Wait, do you mean literally "leashing yourself to the stove" :eek: and not just figuratively meaning it by making sure you don't wonder off?
  7. George

    George waitin' fer rabbits

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    I kid you not. I have a nice black leash (that I bought when I figured out that "hey, this will work great") that is tied to the oven handle and I hook it to my belt loop when I'm cooking so I can't leave the kitchen. I have wandered off and took out the trash and then pruned the rose bush and then couldn't figure out what that buzzing noise was that was coming from the house. Walked in to find thick smoke and my nice can of Chunky sirloin burger as charred remains to the bottom of the pan. I have a lot of story's like that! So I did two things. I bought the leash and I bough a timer like you use for lights when you go on vacation. My stove is plug into the timer. I have to turn the timer on (for say 1 hour so it doesn't go off in the middle of cooking) and then I snap myself to the leash. Works like a charm. Forutuantly I haven't had to go to such extrem measures else where. (big grins)

    Mark I think you are right about diffrent parts of the brain being affected for diffrent people. If the Ruscetti's are right then what happens if "vascular stretching" where the blood vessels in the brain stretch because of protien that is produced by the virus. (well, documented in mice it seems) the blood vessels then start leaking blood into the brain. The glial cells try to repair the damage but it's bad enough that the neurons in that vector end up getting burned out. Since some of these neurons may lead to long used part's of the brain it could take years to rebuild the neural pathways back to those parts. While new neural pathways are being built in other parts of the brain. So I don't know what's going to happen to us even with treatment. Will we ever get back to parts of the brain that where the nerons are dead? Will we be able to build new pathways to old parts of the brain? Do those parts still function even though we are not able to bring them up consiously?

    Lot's of questions. Really I'm not leashed to the shower stall that part really was a joke, I think! (big grins)
  8. leaves

    leaves Senior Member

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    I have spend hours looking for a backpack that was ... on my back.
  9. urbantravels

    urbantravels disjecta membra

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    Goodness, the things that we learn about people's personal lives in this forum!

    The brain does have a remarkable ability to route around damaged areas. But I have to imagine the situation is different when you're experiencing ongoing chronic inflammation/damage versus recovering from a single trauma (such as stroke or head injury.) I think it sounds pretty plausible that different neurological symptom complexes in us may be the result of slightly different areas of damage or inflammation, which could well be just dumb luck.

    For me, I have only had a few really notable episodes of "brain fog" that I can recall, and while I'm more forgetful and a little slower to retrieve information than I was before, I don't feel like cognitive problems are very high on my list of problems. But my emotional centers must be looking pretty raggedy...I cry very easily (when I used to be a big stoneface who was always cool under pressure only cried under severe provocation) and also tend to fly off the handle and get angry very quickly. Both these things are VERY uncharacteristic for me, not to mention kinda hard on personal relationships. :(
  10. George

    George waitin' fer rabbits

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    Really big grins and a slobbery dog kiss!
  11. Bob

    Bob

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    heeheehee...
    leaves, that really made me chuckle... :Retro smile:

    I have a neat trick of holding my cup of tea in my hand, and taking the tea bag out...
    Then, absentmindedly, instead of going to the bin, I go to the sink and chuck my entire cup and it's contents into the sink... and i'm left holding only the tea bag!
    I'm not quite sure how i manage to be so totally stupid!
    It's quite annoying because I've just made myself the perfect cuppa, and then I have to start all over again and make another cuppa!

    As for saucepans... never cook without the lid on the saucepan... then if you leave the kitchen and forget about it, you can hear it clanking when the water boils...
  12. Bob

    Bob

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    I have to work my brain so hard when I read and write that I wonder, if i were to ever get well, then I will find that I have a newly-formed natural super-intelligence, because my brain will have re-routed itself so many times! (I live in hope anyway!)

    I think a lot of us experience a lot of mental agitation with this illness. I definitely have a very agitated brain these days, and rarely feel relaxed with nice smooth emotions.

    I had never cried in public since I was a kid until I had to face my doctor's surgery with my ME. The appointments system and the stoney-faced reception staff, and the nasty nurse, and the uninterested doctor all came together to make me leave the surgery in tears.

    A friend of mine left her doctor's consultation room by angrily banging his door open and shut a number of times while screaming "I hate you"!
    (I wish I had done that!)

    For the non-UK people reading this... Our NHS is often amazing, especially for well-defined and acute conditions with definite treatment outcomes, but for ME patients it is always useless.
  13. George

    George waitin' fer rabbits

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    Heeeeheheheee Good one Bob with the tea cup (big grins and a tail wag)
  14. alex3619

    alex3619 Senior Member

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    Hi leaves, a very lol moment for me from this quote. I'll go you one further: just the other day I couldn't find my pen. I looked all over my flat and double checked my desk top. It was nowhere to be found. I am right handed. I never thought to look in my left hand.

    bye
    Alex
  15. urbantravels

    urbantravels disjecta membra

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    I think "crying in the doctor's office" could be its own whole topic. Even when the doctors are nice I cry. Usually somewhere around the part where I have to say something about how I feel. Hard to avoid that topic in the doctor's office.
  16. leaves

    leaves Senior Member

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    Lol I am always glad when I can provide some entertainment :)) Let me tell you.. there is more where that came from; walking into a room and then realizing you have NO idea what you wanted to do there, throwing the eggshells in the pan, and the egg in the trash, looking for your glasses when they are in fact on your nose etc etc. I have had this stuff since I was very young, so plenty of stories :)) The pen story and the tea story sound totally typical and I am sure they'll happen to me sometime. I always claim my absentmindedness it is an indication of my genius... HA
  17. alex3619

    alex3619 Senior Member

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    Hi Bob, I am convinced that your natural super-intelligence theory is right; well, as convinced as I am of any hypothesis on these forums. I am repeating myself here, but I think its worth doing. Several times I have had spontaneous remissions of ME or CFS symptoms for some hours; almost all were when I was on immunocal and a bunch of other antioxidants and vitamins.

    On one occasion my reading speed when from "A ... cat ... sat ... on ... the ... mat ...) to "Ok, Aachen ... Zyranovsk ... ok thats that dictionary read." Seriously, my reading speed went from 200wpm to 50 pages per minute. Thats fast.

    On another occasion I could do math in my head faster than on my calculator ... oh, and I solved all those horrible physical chemistry equation problems that were bothering me at uni, and I had spent hours doing similar problems, and it only took a couple of minutes. On that same day I could look at equations and see the graph, and induce implications, in just a second. Serious math skills.

    When the brain doesn't function, it drives to make new connections. Our brains function badly and slow, so we make many more connections just to function. When we can remove the brake, I expect to see most of us become very very much smarter (ok, ok, big part wishful thinking here ;-).

    I had an AI professor who joked that as we lose brain cells we compensate by making more connections. His joke was that as alcohol kills brain cells, it was our duty to drink heavily, kill all brain cells but one - as we kill more and more, the brain will make more and more connections. This final cell would be infinitely connected to itself and we would become God. OK, that is a philosophers joke: philosophers and mathematicians are very strange people.

    Seriously though, we don't know what is irreversible and what isn't. One thing I do hope though is that if we all become geniuses we devote some of that new mental capacity to finding even better solutions to ME and CFS.

    Bye
    Alex
  18. alex3619

    alex3619 Senior Member

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    Hi urbantravels. maybe its a guy thing but I usually feel very very angry with bad doctors. They are lucky that a. I am so sick and b. I am a believer in reason and c. I am a pseudo-pacifist (actually a pigeon not a dove in game theory, but hey, not a hawk).

    Bye
    Alex
  19. urbantravels

    urbantravels disjecta membra

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    Crying can be, and very often is, an expression of anger.
  20. shannah

    shannah Senior Member

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    Spontaneous remissions - now there's one interesting topic. I've had 2 very short term one's myself. It's always amazed me how one so sick can go to complete wellness spontaneously - then dive back into the pit - so frustrating. I've talked to a few 'Lymies' (as in Lyme disease, not English people) over the years that have also experienced them.

    I don't see if and where spontaneous remissions have been discussed here.

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