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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. Cort

    Cort Phoenix Rising Founder

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    Pharma is a good bellweather for how XMRV is doing in the broad research community, I think, because while they stand to make a mint if XMRV works out, drug trials are also quite expensive...Since the first drug into a disorder usually makes a ton of money it pays to get in quickly - but they are still not willing to risk the money. Their reluctance to get going on this can only mean that things are not as settled as we tend to think. Maybe the Workshop will help with that or maybe it will take until the DHHS Blood Group provides their take around Dec.

    Drug trials will be needed to prove causation but first they want to be clear about association. They may also be waiting to see what other diseases XMRV shows up in...if its limited to CFS and its allied disorders or if its more widespread in chronic illnesses.
     
  2. Cort

    Cort Phoenix Rising Founder

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    Thanks JMK - that was my conclusion as well - Alter's idea about geographic prevalence doesn't hold up. Their lab must have just missed it.
     
  3. Recovery Soon

    Recovery Soon Senior Member

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    What about Glaxo-Smith Kline. Weren't they doing a study? Any word on that?
     
  4. Cort

    Cort Phoenix Rising Founder

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    GSK is doing a study with the CAA to prove association. They have been the quickest to get on board. They were reportedly ready to jump on a treatment trial early at the WPI but then backed off after the negative studies started appearing. I imagine they will be back on fast when their concerns have been taken care of.
     
  5. Lynn

    Lynn Senior Member

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    As a next step to determine if it was sample preparation, I wonder how difficult it would be for the CDC to get a fresh blood draw from a subset of their patient group, much like Alter did. This would put the whole issue of cohort or methodology to rest.

    Lynn
     
  6. Enid

    Enid Senior Member

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    What a great article Cort, keeping us up to date with all the "exciting" advance and research. Thank you very much indeed. Will keep watching.:victory:
     
  7. illsince1977

    illsince1977 A shadow of my former self

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    Actually, not so tough! Affect is a verb, for example "Perception affects the direction of research." Effect is a noun, i.e. "Hopefully antiretrovirals will have only mild side effects on me!" Unless of course you are referring to the psych term affect, which is pronounced differently and treated as a noun, i.e. "His affect was depressed, so his doctor said he has CFS!" ;)

    Its and it's are fairly simple as well. Use "it's" only when you are shortening "it is". Otherwise, use "its". I think it's confusing for people because an apostrophe sometimes indicates possession, however in this case "its" without the apostrophe actually indicates possession. Sing in post #17 of this thread used it correctly "What is useful to this end is to criticize the opponent's work, while the CDC gets time to step by step move away from its old position." Cort, you are not alone on this forum to mix these things up. I see most posters do it most of the time. I also think you're in a rush to get these wonderful analyses out to us in a timely fashion and mistakes are inevitable, and I for one am very appreciative of your efforts! :Retro smile:

    Enough with the grammar lesson - I have a question about numbers!

    If the problem with finding XMRV/MuLVs in the CDC's sample is even partially from a far too inclusive definition of CFS, what are the implications for the number of CFS cases I always hear bandied about as being from 1-4 million in the US and 17 million worldwide? I've had this for 33 years and never knew anyone else who had it, nor did I know anyone who knew anyone who had it until 2003. In 2003 I met a friend whose step daughter got it when she was in college. My neighbor's sister was diagnosed with fibromyalgia this year, but that's it. I have gotten together with others who are ill, but I'm not counting them because we met through the internet due to our mutual illness. So where are all these folks? I know we're homebound/bedridden and invisible, but the numbers seem impossibly high to me or someone I know would know 1 or 2 people over the years who have it.
     
  8. Cloud

    Cloud Guest

    I think that is precisely why making vaccines proves such a challenge for some viruses. I understand that to be why they have been unable to produce a vaccine for HCV.
     
  9. alex3619

    alex3619 Senior Member

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    Hi illsince1977

    I think another factor is at play: neurological grammar degradation. I have relearned my grammar twice since developing CFS (arguably ME, but not diagnosed as such by a doctor). I have lost grammar, sentence structure (syntax) and most of my vocabulary several times during relapses, and I usually don't get it all back later. We don't just have trouble with the rules, our grammatical capacity is severely degraded. A patient who is extremely ill probably cannot speak, even if the vocal cords are working - can anyone verify this? I know I have lost the power of speach at least once and was reduced to grunts, although I could still understand what others were saying, although this took a huge effort. I no longer care about grammar, and don't mind other people's bad grammar either - we can work on our grammar when our brains are completely restored.

    Bye
    Alex

     
  10. Sunshine

    Sunshine Senior Member

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    losing brain function is sad

    Very glad you raised this Alex, and I like your phrase: neurological grammar degradation

    I would love to know if this is temporary of permanent. (No research has been done on this area of neurology in ME. Nobody ever asks us patients anyway, and no one cars or can get funding to find out how/what is wrong).

    I increasingly struggle to spell now and have no idea on lots of words, I have effectively 'forgotten'.
    I just guess or ask other people how to spell in every single message I type which is very time consuming. Is this caused by brain cell loss/brain atrophy, or 'just' cellular exhaustion in the brain...who knows? What is worrying is spelling is accessing long term memory. The abilty to use grammar shouldn't just vanish, but it does.

    Of the limited people I've met with ME, some are prone to stammer/slur their spontaneous speech the more exhausted they get from talking or when put 'on the spot', not all of course. The worst talk with a whisper or even sound slightly drunk after a chat. I do too, if very out of it. Mostly I just don't speak. Good job I have no friends to phone me.

    It would be interesting to compare physical mobilty (walking) with speech mobility (communicating) in ME patients. E.g get people with severe ME and test them on speech challenges, Vs people with mild CFS who can walk and work. Is there a difference? There should be.

    It would make sense an exhausted body (on a cellular level caused by impaired mitochondrial function) would radically affect brain function/memory and thus speech/handwriting/spelling as well as make muscles profoundly weak.

    The only thing I've read and taken part in was an IQ test, which was a lot lower than when I fell ill. (Neuropsychometry). Without at all meaning to be rude to other people, I'm sure we've all had moments when we are amazed how apparently 'stupid' we are in cognitive tasks, compared to when healthy. (I've struggled with these things since a child, long before the muscle weakness and neuro immune symptoms came on).

    I bet if you put someone with severe ME in am unfamiliar environment, say.. a new shopping centre or large college (first magically take away any anxiety/panic disorder), they'd most likely struggle to work out how to get outside, find a bus/taxi, travel back home. E.g. navigate their way out without help.

    This 'obvious' disabilty of the brain is masked by ME people getting help from others, or simply being so ill they never leave their homes and no one knows how bad ME affects them. I told one of my relatives once and they promptly told me my ''alleged' cognitive dysfunction was not there. Rather strange I thought to say ''alleged'' after I explained everything to them?!

    If family friends do this, no wonder ME patients are reluctant to tell anyone how mashed their brains feel once out of a familiar environment they have learnt. Spelling and sentence structure loss is sadly, on the last of most people's lists to enquire about at the doctor's office, but shouldn't be as it's very intrusive.

    The last time I was in a shop on my own (16 yrs ago)and ill for a few years but still just about mobile from car to shop, I remember being totally overwhelmed at the concept of having to search for food that had lots of packets that looked the same, but were slightly different (e.g chilled section of cheese/meat).

    The idea people can think 'on the fly' and do this automatically and go food shopping nowadays seems baffling to me, the 'speed' at what healthy people can think. I'm praying this is simply an exhausted brain/body, yet people can go shopping after 5hrs in a nightclub quite happily and don't have to ask for help like an 'old granny'. It's strange and somewhat disturbing experiencing this when you're a teen, or in your twenties. Like a mini Alzheimer's state.

    For people with 'brain fog' who can still stand upright with ME/CFS try a soft drinks machine, parking ticket machine, or a ATM and see how you get on. Those things used to stump me too, and remembering where I'd parked the car.
     
  11. Sing

    Sing Senior Member

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    Sunshine,

    We probably ought to make another thread for this discussion, but

    I wanted to say how moved I felt by your description--and Alex's--of your degree of disability, and those specific symptoms/instances. I too have a degradation of my ability to spell. And I used to be an excellent speller, always. Now to be stumped on ordinary words is shocking--but then so many of our symptoms are shocking to us and yet we just have to stay calm and try to work out another approach. I am operating in my margins and beyond them too. I rely on ESP, dowsing, intuition, and God! But I will go back to the language difficulties. When I write long hand I often drop out the middle parts of words. I've sometimes then put that word and the next one together. Sometimes I repeat a section of a word too, like the ing. My talkig woops. Must be getting tired!

    Sing
     
  12. alex3619

    alex3619 Senior Member

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    Hi Sunshine,

    I don't know if it is temporary or permanent, but there is also another possibility: it is unlearned capacity. As our neurological systems struggle to cope they may be trying to adapt, constantly, and in the process keeps losing what we have already learned. If this problem is temporary, or unlearned, we can get it back, although if unlearned then we will have some hard schooling to tackle! If it is permanent then we can still relearn it, but the struggle will be more difficult and will less acceptible results. The brain is plastic after all, but the older you are the longer it will take.

    Bye
    Alex
     
  13. julius

    julius Watchoo lookin' at?

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    It's kind of a paradox though. I totally feel language difficulties you guys are talking about. Sometimes I've even forgotten the name of my best friend.

    But then you look at the posts in this forum, and they are linguistically far above most of what you see elsewhere on the internet. I have wondered about this many times in the past.
     
  14. urbantravels

    urbantravels disjecta membra

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    I keep wondering when and if the brain fog is gonna get me. I'm new in the PWC club (became ill last fall, diagnosed this spring) and although I would fully fit the Canadian Consensus criteria in every last detail, the only one I have to stretch a little bit on is the neurological/cognitive manifestations. My main problems are sensory and emotional overload, and a certain degree of ataxia. My word recall, language capabilities, etc. still seem to be there - a little slower than before, perhaps. But then my baseline level of recall speed before falling ill was very fast.

    Sometimes I almost feel as though the parts of my brain that process emotion are more screwed up than the parts that process things intellectually. I guess you could even hypothesize that means my left brain is more impacted than my right brain. This could be just the luck of the draw as to which parts of the brain are affected more severely.
     
  15. Sing

    Sing Senior Member

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    My answer to this paradox is this:

    It fees so important to communicate, to try to be smart, to say things well, to have a place and people where there is understanding and much commonality when elsewhere there is little--at least in regard to ME-CFS. It can be good for my self esteem, for feeling like a social creature with some place still.

    And in this posting realm, I can take a very long time to write out thoughts which I could not express nearly so well or at all when trying to operate at conversational speed.

    It feels good to my brain to have these workouts--in reaching to understand all kinds of posts, and to try to respond to a few, on a few threads. And when I don't have the energy or can't sit in front of the computer any longer, I don't have to "say" a word. So this writing situation is like those take home, open book exams with the add on of no time limits.

    Sing
     
  16. Sean

    Sean Senior Member

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    I would be very surprised if a number of pharma companies are not doing some serious work behind the scenes. You gotta remember that they have commercial reasons not to say too much in public before they have the goods to sell.
     
  17. alex3619

    alex3619 Senior Member

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    Hi

    On the high standard of posts, I have two additional thoughts.

    The first is that one thing you learn with CFS is how to focus. We are very good at maximizing what we do provided it is the only thing we do.

    The second relates to IQ. I have a whacky hypothesis that degraded brain function induces the brain to struggle to adapt, and over time this leads to very highly developed interconnections that enable us to be able to function more when very fatigued. So when we are less fatigued, we hve so much more capacity than most people. That is, CFS makes people smarter, then stops them using it. Think: what happens when we can finally get rid of our symptoms?

    Bye
    Alex
     
  18. Cloud

    Cloud Guest

    I had both intellectual and emotional suppression. I hear lots about pwc's being emotionally labile, but not me. I didn't feel anything for several years (which in some ways may have been a blessing). I didn't dream or feel anything. It was like being in a void (an abyss). Intellectually, I was a dark mess too having most trouble with word finding, focus, and spatial relationships. Things like not remembering my daughters name, and not knowing why I was in town and when I had actually arrived there. And for sure on the vocabulary issue too. I seem to elaborate too much attempting to make up for the holes. Definitely had a problem with intellectual articulation.

    Anyhow, since Tx, I have began to dream and feel again. It's really cool to actually dream now....I look forward to it. I feel feelings that I haven't felt in years.....I appreciate that too. I was like a zombie with no feeling or dreams. I feel alive now. The intellectual part is still in bit of a fog, but much better (at least I think it is). I know more of that will return with Tx, but I'm not convinced I'll get it all back....Oh well, lots of things I won't get back after 17 years wrestling a dragon.
     
  19. Sing

    Sing Senior Member

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    I know that some of us shifted this thread, so wanted to mention that again--before saying,

    What interesting posts, Alex and Cloud! I appreciate hearing your perspectives. This matters more to me than the latest tidbits of news or speculation, which I get involved with too. Those just don't offer as much as personal perspectives based on a long experience with ME-CFS. Cloud, I am so glad you are regaining feelings and dreams. To me that means an intimate contact with your life again.

    Alex, the last two afternoons I had conversations in which I came out marvelling at my quick and intelligent thinking, so now I wonder if what you wrote might be true. Also I just started on Midodrine for NMH. This is enabling me to keep a higher, hopefully more even blood pressure, but above it it is enabling more oxygen to get to my brain. So I can think better. My vision is also not blurry when I sit up and read, etc. It isn't a cure all and has side effects, but it suggests what could happen with a little improvement.

    Sing
     
  20. Dreambirdie

    Dreambirdie work in progress

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    Hi Cloud. THIS IS FASCINATING! I am so glad you have regained the capacity to feel and dream. Very cool.

    I have often felt in a void mentally, with word finding, and the inability to concentrate, and forgetting what I was going into a room to get, or who I just called on the phone... but never felt emotionally numb. In fact, I think my emotions go the other way and become more amplified, as my symptoms become more severe, especially anxiety and depression.

    Luckily I never lost my dreams... though I do notice my dreams get rather creepy and dark when I am going through a setback, with the common themes being that I am in a "bad neighborhood," or that some sinister character is lurking around or chasing me or breaking into my house, or that my house is infested with some strange bugs, or that I am walking home exhausted and feel like I will never make it back. Whenever I feel better, my dreams change and become friendlier and happier... reflecting my brain's recovery from setback and exhaustion.
     

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