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!
The Mighty Egg: New Life Springs Forth Despite ME/CFS
Jody Smith finds that even with ME/CFS, new life as symbolized by the mighty egg, can still spring forth ...
Discuss the article on the Forums.

Nature.com report that Alter paper reviewers want "additional studies"

Discussion in 'XMRV Research and Replication Studies' started by dean, Jul 1, 2010.

  1. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    yep, this may work out to our benefit. Plus, WPI is saying other positive studies are coming.

    Take a deep breath. We knew it would be a roller coaster ride. Nothing in CFS is easy and nothing is simple and nothing is obvious. Plus, politics is part of it.

    But think back to the studies that have revealed so much of what is going wrong in our bodies. In the last ten years, we have learned a whole lot, and most of it with researchers with very little money.

    Now, things are going fast (well, much faster).

    So, take a deep breath. There will be winners and losers, and we will have little influence. The researchers will determine their own fate.

    Tina
  2. Hope123

    Hope123 Senior Member

    Messages:
    1,141
    Likes:
    532
    The main issue is not the extra studies demanded of Alter or Mikovits in the Science paper. It's the fact that PNAS (supposedly) asked for it AFTER the paper was reported to have been accepted and was on the brink of publication. It's unusual to see a paper get pulled back when it's so close to publication. In the Science story, Mikovits was asked for futher studies BEFORE the paper was accepted.

    I'd like to believe that the eventual paper by Alter will be even stronger but I'm not holding my breath. Someone should try to get the original PNAS paper and compare it to the "new" Alter paper when it gets published.
  3. free at last

    free at last Senior Member

    Messages:
    524
    Likes:
    73
    Notice how the NIH paper wasnt released, and the CDC paper held back for additional studies, why is one positive paper seen as less credible than a negative paper ??????????????????? requiring further study. The CDC probably did have a hand in delaying the NIH paper while they couldnt wait to publish there own. This proves what ive been saying all along, this is so obviouse a coverup im amazed there actually getting away with it, but you see, they always do dont they, they all do. for years so many have manipulated the science to there own ends, that the whole saga is just a disgusting political mess. that they are fully in control of, and probably will remain so, untill either they are proven wrong by enough independent studies, or a goverment enquiries are started ( bit unlikely that as they already know but dont care ) im to disheartened to even debate this much anymore, because i think they might just get away with the coverup, the powers they have are just so strong, that even when its painfully obviouse there is a coverup, there will be no goverment enquiry, because its obviouse they are part of the cover up too. sorry to bring people down i wish i could uplift you all, but i see a mountain being chiiped away with a chisel, and not much is moving im afraid. lets hope for something positive by independent researchers that are not controlled by the goverment. more like the WPI
  4. glenp

    glenp "and this too shall pass"

    Messages:
    753
    Likes:
    16
    Vancouver Canada suburbs
    Its is right there in our face, but still so very difficult to accept.

    If there was at all any concern for us sufferers an announcement to reassure us would have been made, but no, nothing!!!

    glen
  5. free at last

    free at last Senior Member

    Messages:
    524
    Likes:
    73
    We must try to be hopefull even though its increasingly difficult, its possible something could change, i keep hearing about positive studys coming well where are they ? we need them now. that would uplift me, and i guess others Glen, at least other independent researchers can see a strange manipulation here, so they havent had it all there own way, even those that dont belive in cover ups, must be thinking hold on a min, thats a bit odd ? and possibly keep research moving. My problem now is if i accept that the CDC has manipulated this situation so only a negative study be released, then i cant help thinking the NIH paper when released will suddenly find problems, and will no longer be a positive paper ? how they are going to achieve this i cant tell. but surely they must, or this suppression of positive while releasing a negative study will back fire in the long run.

    The CDC dont seem worried about this AT ALL

    That worrys the hell out of me.

    what do they know that we dont ?
  6. Mithriel

    Mithriel Senior Member

    Messages:
    564
    Likes:
    37
    Scotland
    They know they have the power.

    One of their triumphs has been to paint us as neurotic, on a par with people who think little green men talk to them. Everything we say is hear by people with the ability to help us through this filter.

    Everyone feels fatigue but gets on with their lives why should anyone put any effort into helping those who just sit there and complain.

    Mithriel
  7. dancer

    dancer Senior Member

    Messages:
    157
    Likes:
    19
    Midwest, USA
    This morning the Patient Advocate blog said that the NIH research people are being asked to test the CDC samples (the ones designed to NOT have XMRV in them - with ridiculous cohort, wrong test tubes, and whatever else).
    http://cfspatientadvocate.blogspot.com/
    I don't know what his source is for this, but it does worry me. I fear the CDC using these shenanigans to try to dilute or weaken the powerful findings of the NIH/FDA paper.
  8. bullybeef

    bullybeef Senior Member

    Messages:
    476
    Likes:
    44
    North West, England, UK
    Although it could also only prove that the CDC samples were dodgy in the first place. The WPI, no the Cleveland clinic should send the NIH some fresh positive samples to prove the NIH methods work.
  9. Recovery Soon

    Recovery Soon Senior Member

    Messages:
    380
    Likes:
    37

    I don't know what they know, and I don't know much about science. But I can feel a tidal wave- and when it picks up speed no one or no thing can stop it.

    At this point it doesn't matter how neurotic we are painted- it's not about us. It's about science. And there's a battle brewing that will not be settled on our dispositions.

    From what I've read, Alter is a powerhouse- and I cannot imagine a man of his acclaim allowing his work to be discarded or himself bullied.

    If he found something- and it seems he did- he will have to fight to expose the truth, if not for science, than for his own reputation and Ego.

    And then there's the WPI- they've got their teeth into this and they're not stopping. They didn't get this far to be intimidated. Not gonna happen.

    Annette Whittemore is fighting for her daughter- no mother- especially that one- will let this go down like that- not after the road she's traveled.

    The truth WILL come out- I'm sure of it.

    If you want inspiration- just look to those two Dutch journalists who singlehandedly forced this issue. There will be more like that to come- The word is out and the door is slowly opening.

    Each exposure only emboldens others to expose the truth and keep pushing. Add the WSJ reporter (Marcus) to the mix and you see where this is going.

    No coverup will last- Not with a Nation's Blood Supply hanging in the balance.

    You think the pressure is on us- It's not.

    The pressure is on them.
  10. dancer

    dancer Senior Member

    Messages:
    157
    Likes:
    19
    Midwest, USA
    Thank you, Recovery Soon!
    I LOVE that perspective.
    I HAVE been encouraged by the work of the WSJ reporter, as well as CFS Central, and other members of the media who are beginning to dig in to all of this.
    I'm also encouraged by the big names in science working on this.
  11. George

    George waitin' fer rabbits

    Messages:
    846
    Likes:
    44
    South Texas
    I agree with Recoverysoon. The fact that journalist are digging means there is a cover up. (sigh, never thought I would say that.) The fact that government agency's are trying to "manage" things means it's "big". You don't manage the small stuff. (grins) Battle lines seem to be drawn. On one side seems to be people in the old guard who just don't want to let go of their power base. I mean come on Dr. Reeves your office is down that hall now, go sit at your desk and leave the CFS people alone.

    On the other side you've got a group of the most respected names in virology, Dr. Coffin, The Dr.'s Ruscetti, Dr. Alter, Dr. Goff and you have people who are supporting them in this fight like Dr. Rancello, Dr. Vernon, The WPI team, Dr. Miller out at Berkly and others who don't like government messing in the province of freedom in science.

    Like Recoverysoon pointed out, this is no longer about CFS patients. I doubt anyone who is not sick could care less about us. (something we all need to realize, grins) but it's about the government vs the scientific process. It's about the ideal of the freedom to discover and find fame and fortune without interference from big brother. I don't think those scientist who work outside of government labs have a real high opinion of those who work for government labs.
  12. I think about it this way, Alter has (or looks to have) replicated something that destroys the existing zeitgeist, flipping the medical world on its head.

    This isn't just "us" (ME/CFS, FM, GWS, Lyme & "controversial" conditions), there is prostate cancer (the same "it's there, it's not" thing) & possibly a whole host of other cancers once they get a valid test & start looking, subsets of Autism Spectrum Disorders, subsets of Multiple Sclerosis.....

    If this "new" retrovirus is truly there & behind a whole host of "unexplained" & hard to treat conditions - the medical world will be turned upside down overnight.

    For us already on the inside it is frustrating but look at it from the outsider's perspective, it is huge!

    If you were Alter or PNAS, wouldn't you be a little gun shy when another of the world's (supposedly) great labs, the CDC, effectively calls BS on your findings? Firstly from an ego POV, I'd want to double check & firm up the evidence to demolish them (the CDC), secondly I'd want to be damn sure I was right before saying definitively that "up is down".

    Think about their motives as outsiders to this whole thing, outside both the patients reality & the CDC's record of neglect - as far as they (PNAS & Alter, outsiders) know the CDC are meant to be a world authority on CFS, also internationally the UK guru Wessely missed it, so with both them missing something they should have found when you can find it, you'd have to ask why & double check your stuff just to be 110% sure it is right.


    I see no cover up by PNAS or Alter, just being cautious about flipping reality on its head.
  13. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    In my view, if they were both held back at the same time, then they should be published at the same time.

    Tina
  14. Sean

    Sean Senior Member

    Messages:
    1,177
    Likes:
    1,824
    That is my view too.

    It is not the first paper (the original 'discovery' paper) that is the most important, it is the first independent confirming paper that really counts as far as science politics go, and that is this Alter paper. I think they understand very well what is at stake here, scientifically and politically, and that they have to get this one right first time round. I would much rather that PNAS & Alter et al took a little extra time and effort, above and beyond the normal scientific standard, to make absolutely sure their results are solid and unimpeachable.

    If they are right and if their paper holds up to scrutiny (and I believe they are and that it will), then the manure is really going to hit the fan for the psycho-social school and their rabid fan pack, and pretty fast. We are going to see a whole lot of attempts at back pedalling and historical revisionism from the usual suspects. Not that this will save them. But it will be fun to watch, in a legitimate Schadenfreude kinda way.

    I will make one specific prediction: Wessely will claim that he always said it might turn out to have a primary organic basis. And it is true that he has dropped the occasional superficial cynical arse-covering caveat into his pronouncements. But any vaguely competent and fair assessment of his work will come to the conclusion that he never actually believed any such thing, and that he certainly never let the possibility influence the 'expert science-based advice' he gave about this condition.
  15. MaryAnn

    MaryAnn

    Messages:
    44
    Likes:
    0
    The problem is time, and funding. The longer this gets dragged out, the longer it will take for the ‘big’ monies to be designated for research. I know some things are going forward, but we need (and deserve) the government to finally looking at this. XMRV and ME-CFS research must be fully funded with amounts equal to other serious diseases. All this time is being spent on just finding the virus (REPLICATE the first study – its been nine months now). We already know that XMRV does exist. If the NIH study gets published, we need to move on to causation, and then, hopefully, treatment options!
  16. Money won't be a problem, the WSJ is covering it because there is a massive untapped market for big pharma in us, anti-retrovirals cost craploads more than anti-depressants after all.

    Once the Alter paper hits the floodgates will open, causation will be figured out by pharma chomping at the bit to get FDA approval for using their current HIV meds on us (and retesting the failed HIV meds on the shelves against XMRV/MLVs).

    The catch will be the ones left behind, but that XMRV & other MLVs might end up covering 99% of us.
  17. Daffodil

    Daffodil Senior Member

    Messages:
    2,773
    Likes:
    758
    what about the GSK study? is that still happening? can the CDC mess with that, too?
  18. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,261
    Likes:
    1,658
    Australia
    If the additional studies undertaken by the NIH also show evidence of XMRV, then surely that would be more beneficial in the long run?
  19. Mithriel

    Mithriel Senior Member

    Messages:
    564
    Likes:
    37
    Scotland
    Yes, but what are the new studies? If they are from the CDC "patient" group they are unlikely to have XMRV. Dolphin has pointed out that some of this group had no problems AT ALL with physical functioning.

    These negative patients will dilute down the percentage of ME/CFS with XMRV until it is not so much higher than in controls so it will not be a validation study at all.

    Mithriel
  20. Sean

    Sean Senior Member

    Messages:
    1,177
    Likes:
    1,824
    Do you think Alter, Mikovits, etc, are not aware of this issue?

See more popular forum discussions.

Share This Page