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!
Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS....
Discuss the article on the Forums.

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. Sasha

    Sasha Fine, thank you

    Messages:
    8,454
    Likes:
    7,547
    UK
    Thanks, Jenny - if they're two different things and the conclusion of BWG Phase II has been delayed, there's less of a mystery (though no less tension). I'm glad they know we're waiting!

    Sorry your pain isn't very good today. You'll be needing one of these :headache:, apparently!
     
  2. CBS

    CBS Senior Member

    Messages:
    1,367
    Likes:
    271
    Western US
    Jennie,

    Most excellent! Thanks so much for this summary, especially on a day that's not so great for you personally.
     
  3. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    I think our problem is that our or at least my understanding was that Ian Lipkin is/was going to use the protocols developed by the BWG for his sample collection, etc. Then we hear that he has gathered this group together to discuss how his study will proceed - which, of course, suggested that he has determined (a) how it will proceed and thus (b) has received the findings from the BWG. My understanding, which could be wrong, was that he will also be using the assays developed by the BWG as well (and hopefully others!)

    The groups appear to be quite intertwined - they appear to be almost complementary steps of a long process but maybe that's not correct. Perhaps he just happened to bring this group together at just the time the BWG was due to release their findings and he was talking about the general thrust of his study. That is actually the most logical outcome given the state of things and we just got caught in the middle.

    What did Dr. Lipkin think was going to happen, though? He has federal officials, researchers and advocacy reps meet with him in New York right in the midst of all this - allows that information to be posted in the press - and then embargoes everything about the meeting except that it is about future studies for CFS - which is a recipe for speculation. I don't think anybody would really care about that if not for the BWG issue.

    The CAA is caught in the middle right now - not a comfortable place to be.

    Sorry you're not feeling well! I recommend you try on this little cap here - I hear it works greats for the Scots :headache: when they're not feeling well.

    I really appreciate you giving your insights. I hope you feel better soon.
     
  4. asleep

    asleep Senior Member

    Messages:
    173
    Likes:
    212
    The cognitive dissonance: it burns! How is one supposed to reconcile these two points?

    Edit: Sounds like typical "government transparency," where transparency extends to talk about transparency and nothing more.
     
  5. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    That's interesting because as I read that - which is what I was thinking - I just realized that Jennie's statements are not irreconciliable. Dr. Lipkin does believe in transparency - he did after all bring all those groups together - probably to introduce transparency into the process and get them all on the same page He just doesn't believe in transparency with us. - the unwashed masses :)

    Now I do need my Tam
    :headache::headache::headache::headache::headache:​
     
  6. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    Here was my summary on the Buzz Page

     
  7. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

    Messages:
    534
    Likes:
    1
    Europe
    I think you're right Cort - judging from Dr Glynnis comment (in italics) above, and as you said earlier, 'our plan .. to immediately release the results' for optimal sample preparation, didn't necessarily mean immediately releasing them to us/the patients, perhaps only to interested scientists.

    Ah well, but we will get there in the end, once its all sorted out on high.

    Wonder if its possible to sleep with one of these :headache: on your head?
     
  8. Sasha

    Sasha Fine, thank you

    Messages:
    8,454
    Likes:
    7,547
    UK
    You've ended up with five heads, Cort! The very epitome of co-morbidity. :eek:
     
  9. Navid

    Navid Senior Member

    Messages:
    410
    Likes:
    58
    :headache::Green hat::peach:

    sasha:

    glad u like it...i'm a mama so i like to get in touch with my dada side sometimes. (ouch bad humour can be painful)...where's my darn tam o shanter:headache:

    actually i threw the peach in there because it's just as weird an icon as the tam o shanter- ice pack, green faced businessman.........and then the peach?!!?!?!

    what does the peach mean...does it have some deep mystical powers?

    Since the Allman Bros once titled a great album: Eat a Peach....maybe it will make us happy, get us singing and give us super-magical powers of patience.:peach:

    bye sasha!!!!!
     
  10. Sasha

    Sasha Fine, thank you

    Messages:
    8,454
    Likes:
    7,547
    UK
    Yes, shebacat - the peach is indeed weird, and strange in its realism compared to the other things. Yes, what does it mean??? Must be very deep, very deep...
     
  11. jspotila

    jspotila Senior Member

    Messages:
    1,074
    Likes:
    609
    Phase 2 of the BWG is standardizing the assay, right? But there is so much more than the assay involved in designing Lipkin's study. Patient selection, size of cohorts, labs who will participate, and so on. Lipkin will need IRB approval, and my recollection from the CFSAC is that NIAID was working on writing (or approving) protocols for the Lipkin study. So even if he does use the BWG assay, there is waaaaaaaaayyyy more to it than that.

    We all want immediate transparency. I wish I was at every meeting and on every conference call (easy for me to say: it would probably require more :headache:). But the reality is that we - regardless of our washed or unwashed state - are just not going to get all the information on the same timeline as government and scientific representatives. We're just not. Sometimes, the lack of transparency is something to rage against, but other times it's just a matter of things not being ready for prime time. It's hard to discern the difference sometimes, especially when we have all spent more than a year walking around like this:
    :eek:

    Thanks for all the well wishes, friends. Which one of you is bringing my cuppa to go with my tam? ;)
     
  12. George

    George waitin' fer rabbits

    Messages:
    846
    Likes:
    44
    South Texas
    Dang JSpot there isn't a cuppa icon or I'd serve ya up one. (big grins) I know how bad some days can be so relax with a REAL nice cuppa.

    I'd like to address some points and put forth an action plan that will make a point without upsetting the apple cart, just give it a tiny little tilt to get some attention.

    Cort you and I have the same information set it appears.
    The BWG would;

    Dr. Lipkin was brought in to act as an independent arbitrator and to establish if a "link" between CFS actually exists. (why he doesn't have to establish a link between XMRV and prostate cancer chaps my little doggy butt but we will leave that for now) Dr. Lipkin per Dr. Glinnis would use the "gold" standard developed in phase II as a check method for the following portions of the study.

    No word on if this would be published but per one of the panel members (sorry memory lapse there) stated that the information would/should be available by the April NIH conference.

    Now there is no reason for the NIH BWG to with hold the Phase II results from the patient population. There isn't anything that will cause a ruckus on the public level in simply understanding how to find a virus that may or may not be in the population and may or may not make people ill depending on a dozen different things.

    I think it is important for the NIH and for any organization that works with ME/CFS patients to understand that we have be ignore and abused in many ways for many years and are willing to put the weight of our numbers against them and insist on transparency where transparency is warranted.

    I'd propose a small act/demonstration of that power.
    By emailing each of the persons involved which I would say all members of the BWG plus Collins, Faucci and Sebblius each day with a very short e-mail stating those points above by as many people as possible it should get the point across.

    What's the point we are making

    We can help these guys NOT make the mistakes they have made with other patient populations in the past by providing them with the same level of respect, honesty and communication that we expect in return. The 'What have you done for ME NIH' campaign did the same thing it provided an important conduit for the NIH to talk to the patient population. We can continue shaping that dialogue into the future if we apply the right pressure at the right time to the right people and do it with the same respect we ask for ourselves.
     
  13. Sasha

    Sasha Fine, thank you

    Messages:
    8,454
    Likes:
    7,547
    UK
    I don't know how to post a picture so I tried to build you a cuppa out of emoticons but the result was, frankly, disturbing... :eek:
     
  14. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    116
    USA
    It's totally in my nature to try to spearhead Project Bang a Gong (Let's Get it On) but I'm in a crash and have to travel next week which means lots of prep and preemptive rest which ain't working because I am not sleeping. :eek:

    All we need a blog page here or elsewhere with instructions. Suggest using what was done for what have you done ME/CFS today as a model.

    Then we just have to slap links to the instructions everywhere. I'll take care of twitter blasting and my little facebook world.

    Who put the little red car on my head? :headache: That hurts man.
     
  15. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    116
    USA
    I'll take a variation on c. If LeGrice though they'd settle contamination then I expect he thinks it is contamination (otherwise HE wasted a lot of hot air at the CFSAC) and there is a serious rift on how to read the science, still.

    I think yelling Contamination in a crowded room is a really good delay tactic. I trust Le Grice's motives as far as I can throw my car and not the little one on my head. :headache:

    Lipkin may be running a 'I'm in charge and everybody get in line' show, but the BWG is a damn committee.

    OK, I've thrown Le Grice under my imaginary bus, I feel all better.

    I'm climbing in my 3? poster bed.... :In bed: That one in the middle is piercing my brain.
     
  16. Valb626

    Valb626

    Messages:
    39
    Likes:
    0
    Bravo, Otis. It's TIME for new info.
     
  17. OverTheHills

    OverTheHills

    Messages:
    311
    Likes:
    278
    New Zealand
    Have a hug :hug:and a kiss ...MWA (sound effects only (no smiley)) from me Otis, you make me giggle.

    OTH
     
  18. George

    George waitin' fer rabbits

    Messages:
    846
    Likes:
    44
    South Texas
    I like Otis's tata's. . . er umbrellas. (grins) So true Otis about the BWG being a committee and all they have to do is give the CAA or the WPI or the AABB permission to post the information on one of their sites and tada, no problems. (grins)

    sounds like a deal Otis on the set up I'll see if I can get someone to do the blog part. . . maybe Bob?
     
  19. Sean

    Sean Senior Member

    Messages:
    1,269
    Likes:
    2,142
    Honestly, I think some here are reading too much into these delays, such as they are. This is all standard stuff for anything involving large bureaucracies, multiple stakeholders with sometimes conflicting views, difficult technical & policy issues, etc.

    Not saying that they couldn't do better, things can always be done better. But I see nothing yet to give me serious concern about this process so far. I certainly don't feel the need to be instantly updated with every tiny little admin, political, and technical detail.

    Don't leap at shadows. Don't sweat the small stuff.
     
  20. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    I don't think we're asking for immediate transparency..... I think we had expectations based on what federal officials said and we had real reasons to believe that X, Y or Z had occurred and all we asked for was some information on whether or not they had occurred and we couldn't even get an answer to that. A simple answer to the questions - like was the BWG done? If not when do you believe it will done with its work? weren't even forthcoming. We weren't asking for the answer - we were simply asking for a status report! Those aren't questions from a demanding patient community that can't sit still. They're just reasonable questions given the situation - we're not asking for alot.

    They're doing what they do - they're off in their world concentrating on their own stuff. We've been stewing about this for over a week and you are first person to say anything even semi-official which I personally, am thankful for. I'm thinking we should protest just so that they know we matter and that when they do things that end up being confusing, whether its their fault or not, they have something of obligation to cool the fires.
     

See more popular forum discussions.

Share This Page