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!
Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...
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. Stone

    Stone Senior Member

    Messages:
    371
    Likes:
    6
    NC
    "The CDC are already making moves to claim they were never studying this disease. They were and we will remind them and the Government of this"....V99 Post #83

    I'm hearing this a lot as the possible strategy CDC is going to use or already is using to cover themselves. I understand completely why people are saying this but I don't see how this is going to work for them at all. If they try to say that what they've been studying all these many years is a psychological disorder they will call CFS and not that neuro-immune thingy they're going to say is caused by XMRV, then that begs the question, "Why the heck not?". This seems as if it would lead the CDC into even more hot water for miserably failing to recognize an OBVIOUSLY very serious and infectious imerging neuro-immune disease for about 30 years. They can't say they missed it because there's no data on it, because there are tons of data besides the fact that it's sort of THEIR JOB to collect data on such things.

    If the CDC's defense is going to be "We weren't studying that physiological entity all this time, we were studying a psychological disorder called CFS", they would be in much more trouble for that than saying they had merely goofed (continuously and maliciously for 30 years-- but who's counting?) They're still going to have to answer for why they not just ignored but in some cases skewed and even buried parts of the pile of physiological findings over the years, not to mention the relative lack of major psychological dysfunction in MECFS in studies that have accumulated over the years. What will they do with issues like Dr. Anthony Komaroff, whom they have quoted in their own "Physician's Tool Kit" on their web-site in the past who also says the debate is over whether or not CFS is psychological and there's plenty of evidence to prove that (paraphrased). How is inventing a new 'psychological CFS' going to cover the CDC when it only highlights the fact that they completely missed 'neiro-immune' CFS (deliberately or through negligence)? It seems worse to me.

    I think there's a piece missing here, or else they really and truly are that phenomenally stupid and I just can't get my head around that, which is a distinct possibility.
     
  2. Rivotril

    Rivotril Senior Member

    Messages:
    154
    Likes:
    0
    http://www.pnas.org/content/early/recent

    seems like nothing will be in there in tomorrow's PNAS magazine.
    I personally expect nothing in august, and think paper will be published in september
    but it's just a thought, no "real" sources involved here
     
  3. Sasha

    Sasha Fine, thank you

    Messages:
    8,368
    Likes:
    7,429
    UK
  4. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    I would agree, there is a piece missing, but there are other options. The CDC is panicking, or doing what it always has, not realising that it wont be able to disguise it's failings this time. My gut tells me it is the latter option. They have always used this tactic before, and they must do something, how could it fail when they know they are correct about CFS. So I'm going to say it is arrogance. As you say it will surely "lead the CDC into even more hot water". I don't think they're going to make it.
     
  5. Stone

    Stone Senior Member

    Messages:
    371
    Likes:
    6
    NC
    So, what if this XMRV thing actually does pan out, and pans out big time? What if the number of infected people with CFS really is upwards of 95% and it's in maybe 8% of the 'healthy' population (like a ticking time bomb just waiting for the right trigger, GOD FORBID)? How is the CDC going to defend itself? If they say they weren't studying what we have then they have to come up with a reason why they have been ignoring it, because the proof if their criminally cruel actions is there. A real case can be made against them right now; it's just that the people that can do something about it either don't get it or don't care. At least not yet, but something tells me that a time is coming in the near future when certain members of the CDC will be asked to account for their actions or lack thereof. I hope they don't get away with their crimes; I truly hope our judicial system does it's job and those that deserve it go to jail or receive their just deserts under the law. People have died unnecessarily. People at this moment are in terrible suffering, also unnecessarily. Innocent people. Children.

    I don't know what excuse they're going to use when the time comes, or what lame card they're going to play, but the day is coming, and I sure hope and pray fervently that they are seen for what they really are. It's the CDC that initiated this hold on the PNAS paper and turned around the next day and published that rag they call a study, and then followed it up with another lovely study about personality disorders in CFS. The irony of it speaks for itself. And then there's the recent and riveting non-interview given by the CDC. Why did they even bother with giving their non-answers? They could have easily declined to comment 'at this time' or until 'further studies are published', but nope, they chose deliberately to deliver that pant-load to us, knowing we're sick, we're tired and we're hungry (some near desperation) for meaningful information. To what end? What could the CDC's goal have possibly been? Was it to demonstrate further their utter contempt for us? Makes me wonder, does it you?
     
  6. Mya Symons

    Mya Symons Mya Symons

    Messages:
    842
    Likes:
    171
    Wyoming
    Stone or anyone else, do you have another link to this CDC movie? I have tried going through the posts to find it without success. Do you know the title of the post?
     
  7. Mya Symons

    Mya Symons Mya Symons

    Messages:
    842
    Likes:
    171
    Wyoming
    Yes, I think it is to demonstrate contempt. I think it is because they don't like that there are people with CFS/ME sticking up for themselves and fighting for themselves. This makes them angry. And, their egos make it so difficult for them to admit they may have been wrong.
     
  8. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    Hopefully XMRV will go really well, then they won't stand a chance.

    The USA and UK have a one sided extradition law, which I usually I think is a disgrace, however when the CDC gets it in the neck, any chance you could request Wessely, White, etc. and charge them too?
     
  9. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

    Messages:
    534
    Likes:
    1
    Europe
    I'm really confused as to how PNAS date their editions!
    Today I clicked on 'This week in Early Edition - 10th Aug' and got a whole list of articles from 2nd Aug! The same thing happened last week when I clicked on Aug 3rd.

    Anyway, part of the way down this list (who knows what date it is!) is an article about Murine Autoimmune Encephalomylitis. Experts on here will probably tell me that its completely unrelated to our ME (myalgic encephalomyelits)/CFS, cos the Xenotropic in XMRV means mice can't get XMRV, however it caught my attention.

    There was also something else similiar several articles down.

    Unfortunately I can't access the full article of course as I'm not a subscriber!

    Love Sasha's comment about the potato article!! Typical isn't it? I can't even eat spuds now without coming out in a rash.
     
  10. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    PNAS publish an early edition each day, but the main issue comes out on a Tuesday. Around 3pm, not sure which time zone. So if it's today it wont be up yet.

    I think I'm right in saying this.
     
  11. Stone

    Stone Senior Member

    Messages:
    371
    Likes:
    6
    NC
    I was quoting V99 in post #83 of this thread. She said the CDC was making moves to make this claim, not movies. but I can see how easy it is to read 'movies' there. It makes sense in the context. I do that all the time myself. I wouldn't be shocked if they do make a movie to make their false claim sometime in the future when hopefully their feet are held to the fire for their deplorable conduct toward us. Sorry for the confusion.
     
  12. asleep

    asleep Senior Member

    Messages:
    173
    Likes:
    212
    As much as I want this to be true, the cynic in me is not waiting around for it with bated breath. America has become (or has always been and the facade has become tattered) a nation where justice goes to the highest bidder. The CDC is too deeply entrenched in the status quo to be sacrificed for something so mundane as contemptual mistreatment of millions of Americans (and millions more worldwide). I think the best we can hope for is for someone to be scapegoated while the rest applaud and promote themselves for cleaning their ranks (ala whistleblower extraordinaire Reeves).
     
  13. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    I suggest they scapegoat the CDC.
     
  14. Sunshine

    Sunshine Senior Member

    Messages:
    208
    Likes:
    2
    UK
    Hi Esther 12.

    Please don't worry at all that XMRV is something to do with contamination. XMRV cannot possibly be contamination as otherwise CFS patients could not have XMRV antibodies in their blood or grow the virus in cell culture in a petri dish. XMRV is a new human retrovirus, 100% as it is not identical to the mouse version , If it was 'bits' from the mouse version of XMRV (alleged contaminants in humans) would be the same genetically as found in the human XMRV study (if it was a contaminant). The good news, is they aren't.

    XMRV in humans has been photographed under an electron microscope, one cannot photograph a contaminant mistaking it for a virus. The CDC even designed a test for WPI (to check it wasn't contamination) which the WPI scientists complied with, and which proved XMRV is not due to contamination and the CDC'S Bill Switzer is happy with this.

    XMRV is sadly, very real indeed and there is no doubt many people who are told they have CFS, actually have XMRV instead as the leaked Alter paper showed. Failure to detect XMRV is failure to have a test that works. Once the test works, people find it, once they ditch PCR non amplified method. Judy Mikovits said it took the WPI multiple times (4 to 5 times) to find XMRV via amplfied XMRV to the extent they ditched PCR method completely to the public at VIPDX, and are going with Antibody and keeping the hugely time consuming (but irrefutable) virus culture method too.

    XMRV Antibody test = immune response to XMRV. XMRV Culture test = proof of live virus (not contamination) is in our blood.
    (The future XMRV CSF fluid test will show XMRV is in the Central Nervous System, although this will require a painful lumbar puncture, not a simple blood test).

    I wonder what might happen if one has a retrovirus in the CNS? Maybe a disease called ME/CFS. There's the proof, a neuro disease and the fact people with a neuro disease test positive for XMRV at 98%, yet general public at 4-7%, and immune supressed only at 10% . If XMRV is in CSF, it's in the brain. Viruses in the brain that affect mitochondria (XMRV affects mitochondria as does ME/CFS) would cause an exhausted brain that becomes dysfunctional and inflammed. ME (which is called CFS) explains painful muscle and brain/CNS inflammation. We already know CFS (ME) causes brain inflammation according to Dr Klimas. So XMRV in ME patients is higly likely to cause ME. All we need is the CSF test to prove that.

    The CDC XMRV study that failed to find XMRV in CFS and reported 0%, they hadn't even got their own positive spiked sample to check if they could detect it AT ALL!!!! Bizarrely, the CDC went ahead and published anyway without telling the public they did not use the known positive XMRV samples the WPI sent them This would be 'OK' if the CDC had their own positive XMRV CFS samples, but they didn't!!!! The general public aren't aware of this and it confuses people who until shown otherwise will 'Google' XMRV in CFS and find no evidence except from the WPI.

    Try not to be disheartened, Science is taking place behind closed doors it's just a shame us patients aren't allowed a peek into the room once in a while.

    The waiting game of waiting for someone to actually do something about XMRV is certainly very hard to take part. I must say as all we hear is silence. Alter's positive XMRV replication study should change all that.

    Have faith things will improve. :)
     
  15. guest

    guest Guest

    Messages:
    320
    Likes:
    5
    I hope so. :Retro smile:
     
  16. camas

    camas Senior Member

    Messages:
    697
    Likes:
    196
    Oregon
    Nice summary, Sunshine. :Retro smile:
     
  17. SOC

    SOC Moderator and Senior Member

    Messages:
    5,348
    Likes:
    6,401
    USA
    The paper's not in the 10Aug issue. 17 Aug is looking like a pretty good bet. :)
     
  18. Wonko

    Wonko Senior Member

    Messages:
    627
    Likes:
    104
    England
    I dont see how the CDC could claim they have been studying CFS as a psychiatric condition as opposed to ME - the clues in the name - Centre for DESEASE Control - how on earth could they expect people to believe they could 'mistake' their job to that degree - the CDC doing research into psychiatric conditions makes as much sense as them doing research into the victims of armed robbery - whilst there may well be (but probably isnt) a possiblity of a psychological predispostion to being robbed it's not a DESEASE - so why would the CDC be involved

    maybe they should use their resources to study DESEASES? like neuroimmune deseases? one of which happens to be.........

    wont wash.....even incrdibly stupid and foggy people like me wont buy it
     
  19. SOC

    SOC Moderator and Senior Member

    Messages:
    5,348
    Likes:
    6,401
    USA
    I'm thinking the CDC has had a bad case of "mission creep". It often happens in government agencies, by design or accident. As I understand it, the CDC was supposed to be a Public Health organization, not a research into diseases organization. NIH was supposed to be the research folks, I think. Center for Disease Control, right? Watch for and make policy about epidemics and such. Keep control of those last few smallpox samples in case we need them for research. It's supposed to be a bureaucratic policy-making organization.

    I mean, look at them. How many really top-notch medical research scientists do they have there? How many people with degrees in Public Health? What the heck is a degree in Public Health, by the way?

    But somehow, they got a case of mission creep. They start doing some "research", maybe useful stuff like, "Is there really an epidemic of diabetes in the nation?" Then they start to think they're real scientists and claim to actually study diseases. Then they think, "Hey, mental illness is a Public Health issue -- let's "research" that". And before we know what hit us, they are working WAY outside their league. And we get f'd.
     
  20. muffin

    muffin Senior Member

    Messages:
    940
    Likes:
    5
    USA!
    10 August 2010.

    By mid-August, we will say 17 August as SickofCFS noted, if those documents are not out there must be a war of epic proportions.

    Too much time has elapsed, for whatever reasons they give. I really don't care what those reasons are - those papers were ready for publication and in galleys ready to go. So, where the hell are those studies?

    I would not bother PNAS since they just do what they are told and have no real authority. But, it is time to really hit HIGH. We need those studies. We must have them to get the research/funding that is needed.
    I'm not waiting for mid-August. I have already started the screaming and emailing and will keep it up until those documents are out and untouched by the dirty hands of the CDC and other health orgs doing the CYA Dance.

    So, where do we hit? All the usual players. Drop your local newspapers a line about this situation and the deadly cover-up of a highly contagious and known cancer causing virus. Hit the White House site. Keep at it or those studies will just disappear, never to be heard from.

    And sure, hit Frieden at CDC and tell him how disappointed you are in his role at the CDC and esp. in coming clean on the CDC/CFS program. He got my email on this issue in which I told him that it would be best for the CDC to come clean on the CFIDS issue, clean it up, and get the funding and research rather than having us and the media pull it out and make it look so dirty (it is) and creating a PR crisis that can not be controlled or salvaged. So, email the guy. ftdh@cdc.gov
     

See more popular forum discussions.

Share This Page