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Article: CAA Talks With the Experts on XMRV

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Sep 2, 2010.

  1. illsince1977

    illsince1977 A shadow of my former self

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    Hello all-
    I see a lot of this discussion has evolved into answering my reference to the grammar as being "simple." First of all, I did not mean to offend anyone! But I'm glad I precipitated this discussion because not only do I now understand some other PWCs experiences better, but ironically I had the same experience only I completely forgot about it until I read Alex's response to my post!

    I used to be a computer programmer. In 1991 suddenly I couldn't think - nothing was logical anymore. I would look at the specifications and the lines of code I was supposed to modify and I had no idea what to do! It simply didn't make sense anymore! This passed however (though it did lead to my being forced to stop working). Since at the time I had no idea that CFS existed and psychiatrists had convinced me my health problems were psychiatric (not too bright of me, huh?), I never emphasized this symptom when discussing it with CFS specialists later. My manifestations are so overwhelmingly physical that the cognitive stuff is dwarfed by comparison, especially the historical symptoms that are no longer bothering me.

    I also went through a period of years in the early 90s when I often became disoriented as to where I was especially when it was dark. I was able to cope with that by never driving anywhere at night that wasn't totally familiar. I have my neurological issues still; insomnia, early awakening, difficulty concentrating, forgetting a thought I had literally one second later, hand tremoring, POTS, bouts of depression, and light, noise and odor/chemical sensitivity. I also can't remember people that I've met only once before, There is something amiss with my facial recognition abilities. Thinking a lot and trying to learn new things is overwhelming, but I still feel capable, just easily worn out by it. In that sense it may be inextricably intertwined with my profound lack of energy. I cannot tell because when I feel better, I feel like a different person and my brain processes faster as well.

    I am totally bedridden now and must lie flat all the time, so I have my laptop in bed, lie on my side and type with my right hand only. I've never considered myself much of a writer, but do find that like Sing, I am enjoying the process of trying to find the right words to express and clarify my symptoms and experiences and hopefully contribute something to the discussions here rather than just feeding off everyone else's efforts and knowledge. My energy to contribute however is extremely limited so I post only occassionally because it requires so much effort to make my post clear. I have learned a great deal about my illness from all of you generously posting your experiences. I thank you for that.

    Again, if I have offended anyone, I apologize. :Retro redface: It was not my intent. I was just trying to help.
  2. Cort

    Cort Phoenix Rising Founder

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    Thanks - I was hoping those questions would get answered :). Where is everybody???? - has always been one of my big questions...How does the biggest Forum on CFS only have 3,000 members (and climbing, of course ;)) but still if 200,000 people have been diagnosed - where is everybody?
  3. Cort

    Cort Phoenix Rising Founder

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    Such an important topic...I would love to be able to include IQ or neuropsych tests on the Patient Data Repository/Treatment Review program we're creating....It would be great to do baseline tests and then test again after people do different treatments to see which ones are impacting cognitive functioning best. For me, too much exercise results in a dramatic, dramatic decline in cognitive functioning.
  4. Cloud

    Cloud Guest

    Yep, serious derailment of the topic.....I'll do better (after this post)

    Dreambirdie....thanks, yes I'm quite thrilled about this much progress. Amazing what a trip through hell and back can do to make one grateful for the small things. And actually, it's not small at all considering I am amazed to even have lived through the abyss.

    Sing....thanks. Midodrine had a very profound effect on me. I had really bad OI back then (couldn't stay upright over like 1-2 minutes) and it straightened that right out (very diagnostic). For me it was a great drug, but like many other meds, I couldn't continue with it. I sure hope you can.
  5. Cort

    Cort Phoenix Rising Founder

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    Right Brain/Left Brain in CFS- another fascinating question...I think I am similar to you but verbally I got hit pretty hard. I think writing is easier because its simpler - less stimuli....
  6. alex3619

    alex3619 Senior Member

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    Hi illsince1977

    I can't speak for others but I was not personally offended in any way. I understood where you were coming from, and put forward an additional way to think about things.

    We have more in common than most: I was trained as a computer programmer, with specialty training in AI, and was studying for my PhD when my CFS went from moderate to severe and I was forced out of my PhD. I can remember spending hours staring at the computer screen, trying to figure out the most basic issues with my code or experimental design or basic mathematics, and I couldn't. Some days I couldn't even figure out how to log on to my unix account. Indeed, I used to turn around and play computer games on the desktop behind me: it was the only time I had any sense of control, because I could always trash the computer. This marked the beginning of my love affair with computer games (but not high stress shooters, I can't handle adrenaline).

    I too have forgotten much of what happened to me. This is an upside to our memory problems. Every now and then I read someone's post and think "damn, that happened to me too" only I had forgotten it.

    Indeed, while at uni I had one (and only one) day with severe amnesia. I could only dimly remember my name - it took me about ten seconds when i thought to try. I knew I was at a uni but didn't understand why - this happened when I was halfway from my computer lab to the library, so I was standing in a passageway. I decided to go home and sleep, I felt very tired, but I couldn't remember where I lived. So I checked my wallet and found half a dozen addresses - none I recognized. My key didn't help me (no markings), I could still reason, I just didn't remember the important stuff. So I looked at all the addresses again, thought about them, and caught a bus to the closest to where I was: even though I couldn't recall living there. I knew where it was, which was very strange, indeed I could have found my way to any of my old addresses, I just didn't recall anything about living there. So I got to my old address, the key fit, I crashed and woke up the next day with my memory restored, no more drama. My doctor thought I might have had a cytokine surge, this could cause such problems (similar to patients on high dose interferon therapy). So memory problems we all understand; I do know I have forgotten a lot myself, just dont ask me to list what it is I have forgotten. ;-)

    Bye
    Alex

  7. urbantravels

    urbantravels disjecta membra

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    Wow, this really spoke to me. I have strange dreams/nightmares at times ... a recurring theme is that I am lost somewhere (like a big ominous airport/shopping mall/other big complicated place) and trying to find my way back to a room or other safe place, or find something that I desperately need to find, and I have that horrible "clock running down" feeling that I won't have enough energy to reach my goal, that I'll collapse and not be able to move.
  8. alex3619

    alex3619 Senior Member

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    Hi Cort,

    There must be online tests we could use to do this for those who wish to participate. I for one would be interested to see how my functional IQ varies.

    I confess I haven't been worried about going off topic because this thread is a pointer to the great Q&A, and that speaks for itself elsewhere.

    Bye
    Alex

  9. illsince1977

    illsince1977 A shadow of my former self

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    That's what I want to know. Where is everybody??? My rudimentary understanding of statistics and population studies from my B.A. in sociology combined with my long personal history with this disease keeps screaming at me those numbers ARE WRONG! Cort, I'm with you as I was astounded to learn recently that this forum has so few members. I cannot reconcile this with 1-4 million sufferers in the US. Lack of recognition of this disease by those we meet casually must be due to its rarity, not just a publicity problem.

    BTW, when I was listing my neuro symptoms, I forgot headaches - headaches, headaches and more headaches! Now how on earth could I forget that? Got me!
  10. SOC

    SOC Moderator and Senior Member

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    Some ideas --
    I read the website on and off for several years before I started reading the forums and read the forums for 6 mo or so before I joined. There could be a lot of people who for a variety of reasons read but don't join.

    There are quite possibly a fair number of sufferers who can't tolerate computerbo screens, or who can tolerate them for such limited amounts of time that joining a forum isn't high enough on their priority lists.

    There may be people at both ends of the ME/CFS spectrum that can't, or don't feel they need to join a specialist forum.

    And, of course, when there's too much nastiness, I imagine plenty of potential members skive off...

    I expect membership will climb as the HGRV research increases -- more people will be wanting to keep up on the latest.
  11. LaurelW

    LaurelW Senior Member

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    On the brain fog/difficulty comprehending topic, I have a request to make. Could you-all try to break up your posts up into reasonably small paragraphs?

    It's really difficult for me to keep track of what line I'm on when it's all together with no spacing, and I end up having to skip most of the post. Don't want to do that, because this stuff is really interesting!

    :D
  12. mojoey

    mojoey Senior Member

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    Does anyone know why the CAA makes no mention of the upcoming conference on their website besides this FAQ and a tiny paragraph in their archives section http://www.cfids.org/archives/2006-2010-cfidslink/september-2010.asp

    Are they trying to downplay the hype?? Shouldn't this conference be the headline? Why is a story about postexertional malaise their headline in a time like this?
  13. julius

    julius Watchoo lookin' at?

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    That's a really good point.
  14. Mark

    Mark Acting CEO

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    I can only go by the people I know who have ME. Two people who have been diagnosed with it that I know personally (both of them old friends from university), 3 who I believe have CFS but not by CCC. I've contacted them all, and everybody else I know, and thus found another 2 people who have a friend/relative with ME.

    Not one of them had heard anything about the news of XMRV, all of them were interested, but all of them were basically disillusioned. I'd say all of them have a basic attitude of "wait and see" and feel they haven't got the energy to participate online, they've found everything they've seen online confusing and stuffed full of weird suspicious science they can't make sense of, they didn't know who to trust and basically aren't online. So if that sample's anything to go by, I'd say it's very unusual for people with ME/CFS to join up for forums.

    Having said all that, there are several other forums out there that I've heard about, and all of them that I know of are private or semi-private. I guess people have had such bad experiences in the past with people coming on to forums to bully them, and such bad disputes, that they've had to go underground. Don't know, but that's the way it seems. I certainly wouldn't conclude anything from all that about the prevalence of ME. I think we're just underground, scared, hidden away, disillusioned, information-starved, and cynical and despairing after so many false dawns.
  15. SOC

    SOC Moderator and Senior Member

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    I second LaurelW's request. :Retro smile: Sometimes I miss out on interesting posts because I can't manage the long paragraphs.
  16. Sean

    Sean Senior Member

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    I third it.
  17. HowToEscape?

    HowToEscape? Senior Member

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    **What treatment? You found something that actually works?? Please advise.
  18. Lesley

    Lesley Senior Member

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    I don't really want to engage in the ongoing argument about the flaws of the CAA, but I do have to disagree with you on this.

    They sent out a special edition of their email newsletter the day of the PNAS study that mentioned the conference, and mentioned it again in their September newsletter that went out last week. So in the course of 8 days, they informed me of the conference twice. They have also posted the information on Facebook over the past week.

    The "tiny paragraph" you refer to is reached by clicking on the first link on their home page under "What's New?", which leads you to that September newsletter.

    Also on the home page under "Research and Policy", if you click on the first link, you will find the conference mentioned. This is a resource page for the study that includes links to the study and accompanying articles, links to coverage in the media, and links to the CAA's articles on the study.

    The item on postexertional malaise doesn't strike me as the headline, and I really don't see them downplaying the conference. Kim McCleary and Suzanne Vernon are attending the conference, and I'm sure we'll hear more from them this week.
  19. illsince1977

    illsince1977 A shadow of my former self

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    I edited the my post #41 into shorter paragraphs. Sorry about that. I find long paragraphs difficult to keep track of as well. Hopefully it's more legible now.

    As far as the "Where is everybody" question?" thanks for your answer Mark. That's more what I meant - How many people does everyone know who has CFS. I can understand why folks shy away from fora. The thing I like about PR is it's not as single minded as most others I have participated in. Though the ProHealth forum probably looks at many aspects of this illness, I got the (perhaps mistaken) impression years ago that they were extremely guaifenesin/St. Armand slanted, which lost its appeal for me once I crashed after 18 good months on the protocol.

    Of course now I'm getting pretty singleminded as far as believing in a retroviral cause for myself, anyway. I've tried so many things over the years that if it's not this type of heretofore unknown pathogen I am in for untold legions of disappointment and depression!:worried:

    At least I'll know that because of you I will not be alone!:Retro smile:
  20. valentinelynx

    valentinelynx Senior Member

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    I second that request...

    Interesting. I, too, am fortunate that I still have much of my mind, though I'm certain it's not up to it's previous way high functioning. It sounds conceited, and I don't mean it that way, but I started out with a lot of smarts, so having lost even a good amount still leaves me with more than average. However, there are certain problems that stand out. Keeping track of where I am on a page is one, and I've given up on a lot of posts here that I wanted to read, because they were solid blocks of text in which I couldn't keep my eyes on track while reading.

    I also have trouble sorting things and doing mental arithmetic. I practice the latter a lot, so it's OK now, except when I'm extra tired. If I knock myself into severe PEM I get aphasia for nouns and names, too. Mainly I can't multitask like I used to and sensory sensitivity interferes with cognition. I know it's off topic, so I'll quit now. Again, though, thank you for asking for breaking posts up into smaller more easily digestible chunks.

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