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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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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. Otis

    Otis Señor Mumbler

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    Sean,

    I respect your opinion, please return the favor and don't imply your sense of "shadows" and "small stuff" is universal. You are under no obligation to read and comment on a thread which is by definition speculation and opinion. No opinion is more valid than another.

    For those who don't think XMRV could go out with a whimper despite disease causation, check out this excellent article HIV's Politically Invisible Cousins: HTLV-1 and -2

    Otis
     
  2. Sasha

    Sasha Fine, thank you

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    Very interesting article, Otis. I hadn't even heard of HTLV until I started reading about XMRV.

    I hope that XMRV would be less likely to go out with a whimper because CFS already exists as a discrete disease entity, CFS activist groups already exist and patients are already being treated (though badly and with ineffective treatments). If XMRV is found to cause CFS, it would be impossible not to start treating CFS patients accordingly and it would hit the news in a big way.

    It's fascinating to see some of this stuff about the early days of HIV and HTLV research and activism. Really very shocking about how badly they were dealt with by the authorities.
     
  3. Esther12

    Esther12 Senior Member

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    You're right. It's not fair to judge the new people working on XMRV by the behaviour of these previously involved with CFS research. Thanks for picking me up on it - I was being too moody.
     
  4. eric_s

    eric_s Senior Member

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    Thanks a lot, Jspotila, i appreciate your answer. Like i said before, i think it's very good that the CAA has a person in the BWG. And i understand you can help us most in the end by sticking to the agreements you have to make to be involved there and in other places. It's very important you have acess to politicians and people in the administration.

    It's good to know the people in the BWG, the NIH, Lipkin etc. know we are waiting. I hope it's true. I don't want to be uncomfortable unless it's necessary and i like what's going on now, with the BWG, Lipkin and Alter/Lo doing research. If all of this is done with our best interest in mind (and i hope the CAA can help make sure it is) i don't want to bother the people working to help me.
    There was a big failure in the past, when there was far too little and also bad things done, but that does not mean we have to hold the people that are working on CFS now and are in many cases new to it responsible for that.
    The primary focus is that they get their work done and that they do it well, as you said. But i also hope they can understand how hard it is for us to wait and that many of us are scared how the outcome will be, especially since the CDC said there is no XMRV in CFS. So we can't wait to get information that shows us things will be the way we hope. That's why i hope they will stick to their "promise" and immediately communicate the findings of every phase. Please remind them of that if you can and if it's necessary. And please share any info you (the CAA) have as quickly as possible, also just information about when we can expect something. The waiting is much easier if you have some indication when results will come.
    We all live in some state of limbo for a year now, there are positive results and negative results and our future depends on what will be found out about XMRV. It's not a comfortable situation.
     
  5. George

    George waitin' fer rabbits

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    You know though Sean raises a really good point. Most folks don't really understand that the PhaseII trail results settel the "CONTAMINATION" question. Sorry just can't say that word without getting all shouty. That's why some of us would like the information released now. And this portion of the study is done because as I outlined earlier, Dr. Lipkin predicated part of his study on the "gold" standard produced by the BWG.

    So for folks that want to see the CO. . CO,c,cccccc contamination argument settled this is really importants.

    Hey Cort would you be willing to host the Phase II information on you website??? Otherwise I was thinking about asking IACFS ummm I think it's Frieden. What do you think. The results have to have a home on the internet somewhere and I'm trying to figure out where. I think just one place is best and who ever wants can link to the information. Whatch think?
     
  6. Mark

    Mark Acting CEO

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    I agree with Cort and George that it seems some appropriate co-ordinated pressure is well in order - and sustained pressure, until sufficient information is released. Ian Lipkin himself, and Francis Collins, seem to me to be the people to petition. All those who made promises, or who implied some kind of new listening-to-patients was going to go on, and used words like transparency, should be hassled for statements.

    Even if there were no information ready to release, the BWG could still release a statement to that effect - eg: "the phase II results are inconclusive and the assay is still in dispute / in the final stages of standardisation and these are expected to be finished in 2 weeks".

    But there clearly IS information that could be released, or is immenently ready for release, or has perhaps been deemed not suitable for release, because a significant meeting was held over a week ago and no information has been forthcoming. That information is not being shared - we could at least be told a date when further information will be released, that I could perhaps understand, but to be told nothing, even when asked directly what is going on, seems to be the very opposite of the transparency we were led to expect from this group.

    It is quite obvious that any information pertinent to the resolution of questions about contamination, XMRV assay standardisation, and methodology for the study of XMRV, would be hugely beneficial to the worldwide community of researchers investigating XMRV, and that information, whatever it may be, has the potential to speed up worldiwde XMRV research greatly. So what possible reason or excuse can there be for keeping such information from the public?

    Such official secrecy has been a recurrent theme of XMRV/CFS research, and I doubt the assertion that all this really is just the norm. Already we've seen a key paper - Lo/Alter - delayed in an unprecedented manner, and leaked from a private conference and then eventually published with a less obviously confirmatory headline.

    Before that we we had seen a rapid negative study (McClure/Wessely) undertaken without any prior public announcement of its existence - despite questions in the House of Commons and via FOI requests aimed at determining what studies were being undertaken - this controversial but key negative study nevertheless being published months ahead of any of the other, publicly announced replication studies.

    And still now, the WPI and others have completed multiple studies, which remain unpublished - remember that a year ago we were expecting to have seen 6 or 7 published studies by now, and many of those seem to have completed, and we have heard elements of their positive conclusions, and yet still nothing is published, by any of the planned studies nor by any of the groups who have given poster presentations about their positive studies - all the positive information remains unpublished, and random negative studies from people who can't detect XMRV continue to pop up as if from nowhere.

    And it is not a small point George makes when wondering why the prostate cancer controversy - which appears to be the identical problem that some researchers are detecting XMRV successfully, whilst others cannot detect anything - this same 'controversy' in the prostate cancer field is somehow being treated separately from CFS. There seems to be no logic to that separation. It seems a worryingly political separation rather than one based on scientific evidence.


    Anyway: the bottom line is that we can't afford to ignore that information is being withheld from us. We are only asking for at least the courtesy of some kind of statement, something like even "we will make a further statement within 2 weeks", or whatever. With the Lo/Alter paper, crucial positive information was held back for over 3 months. That delay, at least, was an exceptional case, worthy of an explanatory editorial in PNAS regarding the delay and the leak. Whether the BWG's delay and their secrecy over the Phase II trials are unusual practices or not, I don't know, but I think this sort of secrecy, this lack of government transparency, and this sort of delay to the open scientific process, should be seen as being unacceptable.

    And so it seems like a polite but persitent petitioning of the Relevant Individuals is in order...



    As per George...




     
  7. Navid

    Navid Senior Member

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    hi esther:

    i wasn't criticizing your view:D, just hoping it was wrong for the sake of human decency and respect : )...i want to believe in these ppl...especially lipkin and mangan.


    mark:

    i agree with your proposal....but i don't think we should think of it as hassling (as you said polite persistance) the new crew... YET...

    we are in dialog-process with them....they promised us they were different, they were going to treat this disease seriously, they understood our suffering, they were going to communicate with us and act on findings...not even 1 month has gone by and none of this seems to be happening....if after only only this short amt of time, they've proven to be not trust-worthy and not to live by their word,.... then we are just as screwed as we were before they all come on board.

    i think our first emails should be very respectful, holding them up to what they themselves said they would do...if we still get nothing or worse the run around back from them....then the hassling starts and it doesn't stop until things f'ing change...they're not getting off the hook this time and they will not leave us behind to rot away our lives silently!!!!!! not without a huge kicking, screaming, hitting, biting tantrum:headache:....they're gonna need a tam o shantern if they don't live up to their end of the bargain or perhaps the magic peach will leave them cursed forever:peach:

    wouldn't it be so easy for them to put out a stmt: " wow, this is more difficult and complex than we ever thought...it's going to take 1, 2, 3 weeks longer than we thought, but we wil live up to our promises and provide you with the truth when we learn it. "


    " call me a dreamer, but i'm not the only one"
     
  8. Mark

    Mark Acting CEO

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    That's it shebacat. Politely remind them of their promised New Deal, then if they ignore us we stick a big red bag on their head :headache: and then if there's still no news we get the magic peaches out. :peach:

    :D
     
  9. urbantravels

    urbantravels disjecta membra

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    Well, you know, it *has* only been a week since that meeting. I haven't been out of the workforce so long that I've forgotten how much time it takes to get *anything* done that involves a committee. I'm not sharpening up my pitchfork just yet...
     
  10. August59

    August59 Daughters High School Graduation

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    A Famous Peach

    A little bit of peach nostalgia. This is a water tank that helps supply peach growers around Gaffney, SC. A little more peach info for you if interested here.

    :peach::peach::peach:
     

    Attached Files:

  11. RivkaRivka

    RivkaRivka Senior Member

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    If there is to be an email/fax/call in campaign, the message sent has to be short and to the point, like:

    "After decades of being ignored, marginalized and psychologized, after decades of watching our lives pass us by, we are DONE with simply waiting for respect, information and action. We demand transparency: It is crucial you keep us informed of all progress made by the Blood Working Group. Most immediately, what are the results of the BWG's Phase II? ME/CFS patients and their families, doctors and researchers need to know."

    And, for what it is worth, I think the appropriate folks to hit on this campaign are:

    - the two co-chairs of the BWG
    - cc collins and sebelius
     
  12. Valb626

    Valb626

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    Perfect, Rivka.
     
  13. Navid

    Navid Senior Member

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    :peach:
    We are talking Polite Persistance right now.....pitchforks may have to come later. the more emails sent and rec'd the more powerful and united we are!!!!

    yes but it's only been 1 week...BUT before this 1 week it's been 25 long years....they made us 1 promise so far...and already it has been broken....

    I have been involved in multi-million dollar discussions and decision making processes at large corps for years and yes sometimes it takes longer to get the job done or find the answer than you had originally promised, but you do not just ignore all the people waiting for your answer and provide them no information..that is unacceptable and disrespectful of their time and energy.

    we deserve the same respect...these are or govt officials working on a disease we have been sick with for 25 years, this pt. base has had enough disdain and disrespect. we had hope the new team was sincere when they said they would provide us with respect, answers and transparency....

    they have not...as i said earlier it is very easy to release a short message: " explaining that things are taking longer than projected, we know you are waiting, we respect your suffering and will share answers and actions as soon as they are available. "



    the fact that me/cfs pts are willing to accept a missed deadline and silence with no repercussions is the reason we have been treated like sh_t for years.

    one can decide to be calm and accepting of the BWG deadline being missed and no answers provided, but i will no longer be treated this way. that's what this community has been doing for too damn long and has gotten us nowhere!!!

    i was placing great faith in this new team and already feel greatly disappointed and i won't sit by quietly and let it happen. dr mangan, the blood working group and dr. lipkin agreed to treat us with respect..now they need to act on those words.

    my persistent but polite letters have been sent...i hope you, urban travels and the rest of the patient community will join us....there is strength in numbers, as proven by the time for action project.


    the naivete and inaction of the me/cfs pt population will be what ends up killing us.

    :peach: peach power!!!!!


    thanks august 59 for the peachoid info!!!!!! very interesting.
     
  14. Sasha

    Sasha Fine, thank you

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    Ahh - this is the one that if you click on it to make it bigger, you can see it looks like... something a bit different...!
     
  15. Otis

    Otis Señor Mumbler

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    Well said! Maybe add thank you for previous info provided thus far?

    Lipkin hasnt broken any trust, but I would include Mangan (CCed) so he sees we expect answers once a promise is made. Also add the link to the replay file and time index making with the promise.

    Finally set the expectation that we want to the future phases to be transparent wirh a schedule
    including with milestones and dates.

    Also the Patient Advocate talks about the BWG report and expectations it soon.

    Here's a link. It deserves its own thread, but I'm too PEMed to post it.

    http://bit.ly/cgospA
     
  16. RivkaRivka

    RivkaRivka Senior Member

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    all good points, otis. i'm too sick to spearhead anything at this time. i hope someone else can (george?).
     
  17. George

    George waitin' fer rabbits

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    Hey Rivka
    I started a thread with e-mail addresses and some sample e-mails if people just want to do a copy and paste. I suck in the leadership department so anybody want to co-op feel free. The thread will be in advocacy in the morning and I am hoping that you will come by and offer one of your great e-mails for copy and paste. (grins)

    I'm thinking if we send daily e-mails to the people on the list until they cry uncle or their IT people threaten to strike. (big grins) Which ever comes first. I set the deadline for December 3rd of this year for them to release the information to the patient community via one of the advocacy groups website or through one of the web site blogs. Either way we really need that info to validate or invalidate the research that is coming out. Once we know what the "correct" procedure is for handling, storing, drawing and the protocols for finding this virus then we can hold up the science and compare. No more contamination, blah, blah or regional, blah, blah or strains blah, blah.

    Plus, exactly like you said, these goof nuts need to open up lines of communication with the patient community and be open, honest and transparent in all that they do. The patient community is large enough sadly, that we can make their lives very uncomfortable.
     
  18. Cloud

    Cloud Guest

    I'm all for (respectfully) keeping the pressure on the BWG for these results. We may have a very serious infectious epidemic and this work should have been completed long ago anyhow. I agree with letting them know that we are watching and waiting and will not be treated as insignificant any longer. If the phase 2 results are ready.....let the world see them now. And if not.....explain why.

    I really doubt the study results will be delayed for political reasons with Dr Judy on board. Not only is she a ferocious advocate for our community, but she also has vested interest in these results being known.
     
  19. George

    George waitin' fer rabbits

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    (rubbing paws together in glee) oooohhh good does that mean you will e-mail em too!??? Please, please, please, please.

    I got addresses and everything just go right. . . . . . . .<click me> here<please, click me>

    Love the avatar (big grins)
     
  20. Cloud

    Cloud Guest

    HEHEHE (my mutley laugh).....of course I will George. Thanks for the link
     

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