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!
August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
Discuss the article on the Forums.

CDC XMRV Retrovirology Study on CFS Published

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

  1. bullybeef

    bullybeef Senior Member

    Messages:
    476
    Likes:
    44
    North West, England, UK
    Has anyone seen this part of the turn of events link:

    How bad is that? What they really did was request participants via the telephone whom could have been self diagnosed. Should these participants been classified as double blind tests, rather than specific to ME?
     
  2. alex3619

    alex3619 Senior Member

    Messages:
    7,722
    Likes:
    12,637
    Logan, Queensland, Australia
    Hi bullybeef,

    My memory of this research is dodgy, maybe someone here recalls more, but this is not how it worked. The CDC diagnosed people in the community with prolonged fatigue as CFS using the phone. A small number were physically tested - two of those had Fukuda CFS, the rest didn't qualify.

    Does someone else have a better memory of this research? Much of this came out later, not in their published paper.

    Bye
    Alex


     
  3. Doogle

    Doogle Senior Member

    Messages:
    196
    Likes:
    28
    As I understand it, to gather the population based cohort they randomly dialed numbers and asked people if they met some sort to fatigue criteria (not Fukada). If they answered yes they were asked to participate in the study and then further segregated into chronic fatigue and chronic fatigue syndrome like groups. 50% of those accepted into the study had never seen a doctor for their fatigue.
     
  4. dean

    dean

    Messages:
    80
    Likes:
    0
    I have a bit of experience in this venue.....pm me...
     
  5. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    That would be an astonishing thing - if it was true that CDC had the samples (which we know) and couldn't find XMRV in them (which we hadn't heard). THAT WOULD BE A BIG DEAL! :)
     
  6. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    THe CDC embarked on the random sampling scheme a long time ago because they felt that CFS patients were such a diverse group that one subset of patients would end up at one doctor (say, Cheney) while another would end up at another doctor (psych oriented guy). When researchers did the same tests on the two groups of patients they would get different results and it was thought that this could be causing all the positive first studies followed by negative validation studies from independent labs that occurred frequently in CFS.

    So they looked for an 'unskewed population". The problem is that they had such a vague definition that random sampling picked up 'CFS-lite' patients as a rule, many of whom had not even seen a doctor. If they had used the Canadian definition instead which mandated that post-exertional malaise was a major problem instead of just 'fatigue' they probably would have picked up a very different group of people. Things went from bad to worse with the Empirical Definition which completely threw away post-exertional malaise - the key symptom for many CFS patients - as a major factor - which dumbed down the disease even further (and raised prevalence rates fourfold).
     
  7. VillageLife

    VillageLife Senior Member

    Messages:
    674
    Likes:
    36
    United Kingdom
  8. muffin

    muffin Senior Member

    Messages:
    940
    Likes:
    5
    USA!
    That email from a CDC team member

    If you have that email I would think about WHO or I would sending this email to. Sounds like it might be quite valuable to a great many people. I would see what the others think about this email and who needs to have it. Maybe the media, select sorts of course, or the government or off to a great number of people in Congress, GAO, etc. Ideas?

    Originally Posted by John Leslie
    "I have evidence in the form of an e-mail that at least one member of the CDC team who published the negative study received 20 XMRV positive samples from the WPI in September 2009. This was before the Science paper was published. The CDC, therefore, had 9 months to develop a clinically validated testing method to find XMRV when it was right in front of them. They instead used "the CDC" method that they used for the study and could not find ONE positive out of the 20 positives provided.

    The CDC team then proceeded to use that failed testing methadology for the study.

    They KNEW they couldn't find XMRV and proved it to the world. Who would do this? We know that before Bill Reeves was reassigned he designed this study and worked on this study. What other questions should we ask and when? Who knew and when?"
     
  9. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,395
    Likes:
    222
    Clay, Alabama
    I am not a microbiologist, virologist or any other kind of "ologist." But could someone explain to me how a test that is designed to find MLV will find XMRV? I understand the genetics are similar. But, come on, we already know this virus is hard to find.

    I am guessing someone else used that method and found XMRV.

    Switching samples is a key here. Take same negatives and positives, (multiple labs now have positives) and establish first you can find it using your method and then do a new study. Better yet, use the method that WPI used if you are going to dispute their findings.

    Is it me or is it them? It's them, right?

    Tina
     
  10. Dr. Yes

    Dr. Yes Shame on You

    Messages:
    867
    Likes:
    22
    Hi eric s,

    We could contact as many journalists as we can, as well as our government representatives, and give them the story (and links to the WSJ and other reports). Make sure they are aware that a top NIH scientist reported at a scientific conference that the FDA and NIH found that 3-7% of U.S. blood supply donor samples were positive for a newly discovered human retrovirus that has already been linked to two dangerous diseases... yet in a controversial move that joint FDA/NIH study has since been withdrawn (with contradictory statements issued as to the reason) just before publication in a major scientific journal. Let them all know that the major U.S. blood bank association is now asking all people with a history of chronic fatigue syndrome, which has been linked to the virus, not to give blood, and that people with that disease have recently been banned from giving blood in a number of countries. Tell them that in spite of all this the FDA/NIH paper is caught in political limbo and in violation of proper scientific procedure, and that from what we already know, it is clear that this paper should be released now - in the form that was originally approved by peer review - in the best interests of medical science and public safety.

    Other actions can be considered, for those who have the energy.. we can individually and collectively be creative, and perhaps there are ideas from other patient advocacy groups that could be borrowed.
     
  11. Dr. Yes

    Dr. Yes Shame on You

    Messages:
    867
    Likes:
    22
    It is already a big deal. After all the talk about sharing samples and consensus, after the DHHS involved Dr. Mikovits in the Blood Supply Safety Task Force specifically to collaborate with other government agencies, it would be ridiculous for the CDC NOT to run their assays on those WPI samples. At least, if they didn't feel the need to initially, they definitely should have later (perhaps when they were asked to 'review' their study recently..).

    We know that Kuppevald, the Dutch study author, later confirmed that he had tested a WPI sample and vice versa, yet hasn't been criticized in the scientific community at large for not reporting this fact. It seems you can get away with a lot in research these days..
     
  12. WithHope

    WithHope

    Messages:
    33
    Likes:
    0
    The only one thing that the CDC study proves is that XMRV is not in people who have ‘chronic fatigue.
    Though perhaps even this assumption is not correct given Vernon’s critique of the test tubes etc.

    I have chronic fatigue (i.e total ongoing exhaustion, and as a result – often an inability to take part in sports/ work etc). I certainly do not have my partner’s disease- which includes a constellation of neurological symptoms - within weeks he went from a busy life writing a PhD at Oxford University – to not being able to read or make sense of simple paragraphs. 7 years later he is still mainly bed ridden, living with the diagnoses of ME/CFS. According to the CDC summary of their study – someone like my partner would be excluded– yet he is the living, breathing embodiment of ME/CFS – unrefreshing sleep patterns, post-exertional malaise, joint and muscle ache, painful lymph nodes, ongoing sore throat etc etc…

    I strongly admire Cort – and his commitment to developing and maintaining this site – though I must disagree with one point he made in a separate thread – (apologies I cant find the quote) – I believe Cort suggested that it wasn’t advisable to be too angry that the XMRV finding vis--vis - ME/CFS only just came about – because after all – ‘XMRV’ is a relatively newly discovered retrovirus.

    With HIV/AIDS – it wasn’t that scientists discovered a disease and then mapped it onto a sick population – rather - a sick population emerged – and governments throughout the world invested significant time, money, resources and man power (albeit belatedly) in going, after, and discovering a new disease. The same cannot be said for ME/CFS.

    Governments on both sides of the Atlantic have paid for advice, and created leadership positions for people who believe in a psychiatric/ psychological model of ME/CFS. Wessley and Reeve’s views would not be significant – were it not for the fact that major Western governments continue to rely on, and invest in these views. Their research (involving people with chronic fatigue – as opposed to CFS) in turn further cements their positions – it is a self-perpetuating cycle – with devastating consequences.

    Unless the XMRV/CFS/ME findings – originally emerging from an independent body – are found to be correct – and therefore break this viscous cycle (by confirming ME/CFS as a non-psychiatric disease) – then as things stand – the answers will not come from government-backed agencies.

    In order to make real gains in ME/CFS – like the enormous gains in HIV (the field I have spent the last 10 years working in) – it would require an equivalent response whereby government- backed, scientists throughout the world work aggressively – and competitively – to find a new disease. I fear they won’t do this – as long as it is in their interests to invest in the views of Wessley and co.
     
  13. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    The CDC XMRV CFS paper states:
    Dr Vernon states that:
    This is from the makers of the CPT tubes:
    http://www.bd.com/vacutainer/faqs/
    RNA Tube Product Circular (PDF, 1,410KB)
    http://www.preanalytix.com/FAQ.asp#
    I'm no scientist, but I thought these bits fitted her description of a study designed not to find XMRV.
     
  14. Gemini

    Gemini Senior Member

    Messages:
    398
    Likes:
    301
    Dr. Yes,

    Excellent post.

    Like your clear-cut focus on the virus, the blood supply and ME/CFS.

    And the facts: who has reported what, and what actions other countries have already taken.

    Gemini
     
  15. Gemini

    Gemini Senior Member

    Messages:
    398
    Likes:
    301
    V99,

    Thanks for researching the technical information about the blood draw tubes. Interesting.

    This is such a key point, perhaps a blood specialist can add further insight.

    Gemini
     
  16. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    Not at all- it was designed to pick up all patients - people seeing all different kinds of practitioners; the definition, however, proved too weak for them to pick up many patients seeing practitioners - that I guess was a surprise (or was it given that fatigue is the most common complaint of all? - maybe they weren't surprised). They really didn't know until they did it.

    At that point they should have assessed how different those patients were from those seeing doctors and/or upgraded the definition to pick up patients who were sicker.

    The random sampling efforts demonstrates the different kinds of fatigue present in the general population; gradual onset fatigue is apparently far more prevalent than acute onset fatigue; CFS however is associated with acute fatigue mostly.
     
  17. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    They must have run the assays (or samples), don't you think? They must have asked for them - the question is why didn't they use them and what were the results? That's such a big puzzle - that goes to the heart of how they view the WPI and what its results mean. They had 8 months! They must have done something with those samples.....

    They didn't use them in the study - why? They said they didn't have validated XMRV positive samples....thats true if you mean validated by several sources.... They threw an XMRV plasmid for Dr. Silverman in blood sample - that's very straightforward - you know XMRV is in there - you put it in there and you know what concentrations it's in - so you know how far your tests can go; there's something to be said for that.

    A human sample is different - you don't have those set parameters to work with so it's messier...but I would imagine finding XMRV in a native blood sample is different from finding it in a spiked blood sample...how I don't know.
     
  18. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    Thanks Gemini

    I would like to really understand this point also, can anyone expand on the tubes used? Also what were the tubes used by the 'Science' paper?
     
  19. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    I agree with what you say.... with so little money spent on CFS no body (except the WPI) was doing the extensive pathogen analyses in CFS that would have turned up XMRV......XMRV turned up in a micro-array test; some bizarre genetic sequences turned up that they tracked down and realized they had a new virus. I don't think it was even isolated until the WPI did their study. (XMRV for some reason did not turn up in the WPI's micro-arrays.). Still, with this one pathogen you needed an array to pick it up and I'm sure they were even created five years ago.

    I absolutely agree that the feds have done the opposite with CFS that they did with AIDS; instead of a major effort they marginalized the disease keeping funding at life support - practically a guarantee that little significant progress will be done. I do think the feds will eventually be a major part of understanding CFS but not the CDC - that I imagine will occur at the NIH.
     
  20. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    The Vacutainer tubes were the same except for one type used heparin and one used sodium citrate. I have looked and looked and haven't found anything on the internet that suggests the CDC tubes are not suitable for pathogens. That iinformation must have come from somewhere but I don't know where. . Nowhere can I find anything that says do not use sodium citrate with pathogens. I assume, given the lack of overt warnings, that one tube is simply a bit better than the other at preserving pathogens (?)
     

See more popular forum discussions.

Share This Page