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!
ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
Discuss the article on the Forums.

WHERE ARE THE FDA AND NIH XMRV STUDIES? 5 August 2010 - It is TIME

Discussion in 'General ME/CFS News' started by muffin, Aug 5, 2010.

  1. muffin

    muffin Senior Member

    Messages:
    940
    Likes:
    5
    USA!
    Where are they? Why have they not been released?

    I think we need to beat on everyone (HHS, NIH, FDA) to get those documents released. It is now 5 August - I would give it another week but if those documents are not released, and released without any CDC/government intrusion/group grope, then we start the very serious screaming.

    We must have those studies. We NEED those studies to prove that XMRV is real so that we get the attention and funding that we need. This can't leave the list for us. BEAT on the Federal orgs NOW. And in one more week, if those studies are not released then it is a declared WAR.

    I finally did get a standard email from OID about the FDA study ( I think it was, it was BS so I ignored it). But having the authors review their work sounds like the big lie to me and a play to keep those studies away from the public for as long as possible so that the government can start damage control - if it hasn't already. We know that the CDC has already moved into major damage control over XMRV, but the other federal health orgs may not have moved as quickly as CDC did and are still trying to figure out how to control the mess that is going to come when those studies are finally released. Perception management and all that...

    Keep emailing the Federal health orgs about those studies so they know we all are waiting and well aware. I also state to them that the studies should not have any interference from other organizations, especially the CDC. And yes, I tell the truth since, let's face it, the government knows the games being played - or at least those involved know the games being played by the major players. I want them to know that WE know the games and are watching and waiting and none too patient or amused that these studies were not released in a timely fashion and without government intrusion - read the CDC's very dirty hands. That would be you Bill - you vindictive, demented, old sociopath.
  2. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    What muffin said.

    I have recently heard two different statements on this paper, both from supposedly trust worthy sources. One saying that it is back with the publishers, one saying it is still undergoing extra testing. Well, it cannot be both. I therefore believe we are being deliberately fed conflicting information, to keep us quiet. Every minute they put publishing this study off, they are loosing people. To suicide, abuse, depression, etc. The don't give a damn about ME patients. RELEASE THE STUDY NOW!!!
  3. WithHope

    WithHope

    Messages:
    33
    Likes:
    0
    I feel like if we all get angry and active right now we risk doing more harm than good. I do agree though if the study continutes to be delayed - beyond a couple more weeks - then perhaps it is time to get noisy and angry. Remember Bateman said that when all goes quiet - this is really very good news - not to be put off by the silence. I am holding onto those words as we collectively wait and hope.....
  4. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    I don't see how. They are either going to help us or not.
  5. WithHope

    WithHope

    Messages:
    33
    Likes:
    0
    PS: I also think we need to conserve some energy - my thoughts are when the FDA/NIH paper is released that we need to be communicating one very clear message - with collective voices -
    CLINICAL STUDIES NOW!

    If treatment can help people - and possibly even cure people - then all the other mess - all the issues - the names etc.. all of that starts not to matter as much - people have their lives back. I think rallying around a single constructive message is our best hope.

    I took a valuable lesson from my doctor recently - who almost died from toxic paint poisoning (coming from the neighbouring office with shared ventilation the paint that was used was illegal). Her lungs collapsed and she was in hospital for weeks struggling for her life - I suggested to her that she must be furious with her neighbour and must want to sue. She responded - that she knew she had to conserve every bit of energy she had in her for one thing and one thing only - and that was survival and health. She knew that if she went into a place of deep anger it could destroy her and lessen her chances of the only thing which really mattered to her - which was getting her life back. She said she had to take her whole body and mind to a place of peace to achieve that aim. I learnt a lot from her story.
  6. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    That makes lots of sense WithHope. However, there are enough of us to do both things. It is also possible to separate anger and other emotions from the task of getting the Government to release the study.
  7. boomer

    boomer Senior Member

    Messages:
    143
    Likes:
    6
    Is there a page with email addresses to write to?
  8. Megan

    Megan Senior Member

    Messages:
    230
    Likes:
    13
    Australia
    I had heard the testing is finished and the paperis with PNAS. V99 where did you hear that it is still undergoing extra testing?

    The CAA website says the extra testing is completed and publication will happen later this summer (am I correct that this means by end of August?). I am trying to not be to worried until then but if it hasn't shown up by then I will be concerned.

    Though at this point I would still be more comfortable hearing a statement from the PNAS editors that they will publish. They are the last hurdle in the line, so even if those in other places say it will happen it's hard to be 100% confident that it will unless the editors say it too. And they were reportedly leant on to hold back in the first round (http://www.nature.com/news/2010/100702/full/news.2010.332.html?s=news_rss). Accordingly, I think the best strategy at this point is to lobby PNAS to publish as their credibility is clouded by this, assuming that's where the paper is. Their email address is pnas@nas.edu.
  9. SOC

    SOC Moderator and Senior Member

    Messages:
    5,289
    Likes:
    6,277
    USA
    Let's try to keep in mind that the normal process of publication takes a certain amount of time. You can't make your bread rise faster by persistent poking.

    If people want to do something to relieve their impatient feelings, I think Megan has the best idea. PNAS probably has the paper in production, so they'll be the most likely to know the time frame. If it's not actually in PNAS' hands, they probably know where it is. That said, I suspect that many people inquiring about the progress of the paper is akin to a van full of kids saying, "Are we there, yet? Are we there, yet?" Not likely to get us there sooner, but quite likely to eventually irritate the people trying to achieve the goal.

    All told, I don't think we're outside the range of normal publication time yet, and taking up the time of the people trying to get the work done is not the best way to get the paper out ASAP, IMO.

    I'm still guessing publication in mid- to late-Aug based on my outdated memories of publication schedules. A month after that and no publication, then I start worrying.
  10. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    The CAA, the IACFS/ME, Wanda Jones, etc. have all alluded to the extra testing. None have said that the study will be published in PNAS, they say it is expected to be published. Some talk as if the extra testing is done, others as if it is still ongoing. I have also heard that it wont be published until September. If that is the case, it is not, in a few weeks time or at the end of the summer, which is what the CAA have said. I don't think anyone knows.
  11. SOC

    SOC Moderator and Senior Member

    Messages:
    5,289
    Likes:
    6,277
    USA
    Perhaps you might get some clarity if you time-framed the statements you are working with. If people said in early-June that tests were being done, that's not inconsistent with a late-July statement that publication is a few weeks away. I don't know when all the statements you refer to were made or how knowledgeable each speaker is, but I'll bet if you organize your pile of confusing data, you might find a helpful pattern.
  12. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    The CAA website for one does not help with providing dates. The IACFS/ME statement was the 30th July. Someone else will have to say when Wanda Jones sent out her email.

    I think the CAA said the study would be released in weeks, about 4 weeks ago. That has now changed to the end of the summer. To me it indicates that no date has been set, and it is likely the date keeps getting moved back, but by whom?
  13. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    I think that situation is exactly a job for the CAA. The authors of the study or the PNAS will probably not give an answer about this to a single person out of the general population such as one of us. And we should certainly not risk losing Dr. Alter by putting too much pressure on him.

    So the CAA should be in contact with those people (Dr. Alter, PNAS, DHHS) and try to figure out what's going on. And if they feel something is not right, they should start to make noise.

    If the paper is not out by the end of August, i expect to hear from the CAA, when we will estimatedly get to see it and why it's not out yet.
  14. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    I agree eric_s. Once September rolls around, it will have been about 8 weeks since we started to hear the paper had gone back to the publishers.
  15. SOC

    SOC Moderator and Senior Member

    Messages:
    5,289
    Likes:
    6,277
    USA
    Publication dates slipping is not unusual in scientific publication, but we don't know, of course, if this is normal slip or something more sinister. I believe it was HHS that said the paper was in the hands of PNAS.

    If you feel the need to do something now, you could find that statement and as a single person inquire of PNAS if that's true and, if so, what the expected publication date is. You could report here so that everybody doesn't have to write PNAS and slow down their work. Your communication would be most effectively received if presented as a couple of simple questions with no particular request for action. That could be easily handled relatively quickly by any number of people as PNAS and is therefore more likely to get a prompt answer.
  16. pollycbr125

    pollycbr125 Senior Member

    Messages:
    353
    Likes:
    180
    yorkshire

    Yep harrassing folk with a barage of emails will only get folks backs up . At the end of the day It is only 10 months since the original WPI study appeared so for all that has happened in science in the last 10 months regarding xmrv it is bloody quick anyway and I would think unprecedented .

    The best way people can spend their time at the moment is by educating people on xmrv .Believe me there is a lot going on in the background that we have no idea about and by that I mean folk helping us . It would be a shame if through folk getting angry and frustrated we turned our allies against us .
  17. pollycbr125

    pollycbr125 Senior Member

    Messages:
    353
    Likes:
    180
    yorkshire
    I agree one or two people enquiring is enough and then report back to eveyone else .
  18. Levi

    Levi Senior Member

    Messages:
    188
    Likes:
    27
    Yes, its a pity

    That the Lo/Alter study has been so effectively quashed. What are your plans y'all, if, as I strongly suspect, the study is never published at all? All complaining will do is make CFS/ME patients and organizations look like ineffectual, cry-baby whiners to the medical profession and general public.

    Is one obscure study that sat on the back burner for months going to change the way mainstream western medicine treats CFS/ME? Is this "pot watching" merely flogging a dead horse?
  19. VillageLife

    VillageLife Senior Member

    Messages:
    674
    Likes:
    36
    United Kingdom
    oooh I just checked and there is a webinar next Thursday with blood saftey expert - Louis Katz ....maybe this has been scheduled to prepare us for the FDA/NIH paper ?
  20. jspotila

    jspotila Senior Member

    Messages:
    1,069
    Likes:
    587
    That webinar was scheduled back in June (I think). You might remember that Dr. Katz gave a CME lecture on XMRV and blood safety several months ago, and it cost over $100 per person to attend. The Association invited him to give the webinar in order to give patients access to the information for free.

    On July 27th, the Association said (on FB), "The paper will be published in the Proceedings of the National Academy of Sciences (PNAS), although no date has been given by the journal. The journal is published weekly and comes out on Tuesdays. The authors expect the paper will be published "soon." That is the most recent info gvien to the Association that I am aware of, and "soon" is in quotation marks because that was what we were told.

See more popular forum discussions.

Share This Page