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!
Hyperparathyroidism: An Often Overlooked Differential Diagnosis to ME/CFS
Andrew Gladman puts hyperparathyroidism under the microscope, exploring what the disease is, how it can mimic ME/CFS in presentation and how it is treated.
Discuss the article on the Forums.

Blood Products Advisory Committee Meeting Announcement (BPAC) December 14-15, 2010

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Otis, Nov 26, 2010.

  1. Cloud

    Cloud Guest

    I wonder who labeled them "recovered", how much the patients themselves agree with that status, and get their take on whatever improvements they have made.

    The fact that some have made huge improvements over the years without treating an active retro-viral infection, is very significant.
  2. omerbasket

    omerbasket Senior Member

    Messages:
    510
    Likes:
    13
    As far as I understand - the samples in phase IIb were from the same patients whose samples were used in phase IIa. And in phase IIa the CDC found all of the four to be positive for XMRV with two of the methods used.

    Look at what Val wrote:
    Phase IIa:
    Phase IIb:
    As far as I understand it - the CDC didn't use in the IIb stage the assays that found positives in the IIa stage. But in the IIa stage they found by a combination of two methods that ALL OF THE FOUR WERE POSITIVE. They even checked for contamination and did not find one.
    I don't really understand why they haven't used in phase IIb the assays that found XMRV in phase IIa. Anyway, there is also the factor that we don't know what they were testing in phase IIa regarding the samples being plasma samples, PBMCs samples or whole blood samples.

    By the way - they found an explanation for the "false positive" of the WPI. But why are they so sure that it's false? couldn't it be that this "pedigreed negative" is actually positive? It's the second time that the WPI find the same "pedigreed negative" to be positive. So it's possible that the WPI got a false positive. But it's also possible that this patient is actually positive!
  3. CBS

    CBS Senior Member

    Messages:
    1,364
    Likes:
    246
    Western US
    I did see that Coffin consults with the DRP. I tend to view Coffin more as a conservative scientist who knows nothing more about CFS than what the CDC has told him and not as being "against us." I do hope that Alter pulled him aside after the meeting and shared a thought or two. Really glad to see Alter allude to the need for appropriate diagnosis.

    As for "that part," I'd think of it as a something akin to a kidney donation. There's a reason we were given two (nature has a way of being redundant when it comes to the important stuff) but you don't need them both (I actually have it on good authority that you don't really need either of them - not kidneys) to keep going.

    As for the blood supply, you'd need a test for XMRV/MLV's to clean it and keep out tainted donations. However, the blood collection agencies don't test for blood related cancers directly but those patients are permanently deferred (can't find a list but just spoke with a American Red Cross medical staff that confirmed this deferral):
    AABB - http://www.aabb.org/resources/donation/Pages/donatefaqs.aspx

    If I were an FDA Blood Safety official my nightmare scenario would be a wide spread infectious retrovirus (5% of the population) with a long latency period but that is not detectable in the blood even though it is associated with numerous cancers and neuro-immune disorders. I hope that this is not where we are headed but I do hope that people at the FDA are losing some serious sleep over this.

    Say this were the case, is the most manageable public policy then to deny the dangers and keep telling everyone that there is nothing to fear? I'm not much of a conspiracy theorist but simply from a practical stand point, I'd hate to be in charge of ensuring public safety when the truth was that 1/20 transfusions was going to infect a seriously ill or traumatized person. On the other hand, if this were the case, the autologous blood banking business would go through the roof.
  4. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    440
    Raleigh, NC
    Coffin found two people with CFS who appeared to have MLV's but his new test showed they actually had mouse DNA....That's one thing. THere was another researcher at the last Workshop who was going to report she had found another form of XMRV - which turned out to be contamination.....He's concerned more with Alter than the WPI, I think.

    I think he's probing deeply but he's on the fence...If Alter can isolate the virus he will be fine....in lieu of that Coffin is fine...He didn't seem to have many problems with Judy's presentation I don't think.
  5. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    440
    Raleigh, NC
    Interesting! Good catch! They didn't use the assay that worked the first time......in Phase IIB -- I would think they would have used the same assays throughout.....Maybe if they had about 20 more samples they could've used more assays for each stage.........
  6. leaves

    leaves Senior Member

    Messages:
    1,193
    Likes:
    15
    Thanks Cort, I appreciate it.
  7. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    440
    Raleigh, NC
    We are counting on that sample being negative. I assume that its been tested many times by the WPI and its come up negative each time. We don't know though.
  8. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    Sorry, but i can't be so positive about this. So far we've had phase 1, phase 2a and phase 2b. And in pahse 1 and phase 2b the WPI got a (presumably) false positive.

    If they really are able to explain the false positive then the result is pretty good, but i wish they would not have so many false positives.

    I don't see how you can say they were able to tell the positives from the controls in this case.

    It does not change my opinion, i still believe the positive studies were correct, but i'm not really happy about this result. Also i hope if Judy Mikovits said that the WPI's serology results are concordant with the NCI/Ruscetti's that this doesn't mean they also have a false positive there (like NCI/Ruscetti).
  9. Esther12

    Esther12 Senior Member

    Messages:
    5,268
    Likes:
    5,478
    I didn't know that. That explains his scepticism a bit. What a mess this all still is.
  10. alex3619

    alex3619 Senior Member

    Messages:
    7,230
    Likes:
    11,363
    Logan, Queensland, Australia
    Hi CBS, there is an important factor that is missing in this argument. A friend of mine had a burst stomach ulcer a year or two ago. During the surgery he had 18 units of blood. Each of these probably came from a different donor. He is now very worried about XMRV since we have discussed the virus. Surgery sometimes requires a very great many units of blood from different donors. This might mean the risk of infection is very high, approaching certainty. It is so high in fact that it might explain most cases of CFS and XMRV infection. People with XMRV might be blood recipients, children of blood recipients, or partners of blood recipients.

    Bye
    Alex
  11. CBS

    CBS Senior Member

    Messages:
    1,364
    Likes:
    246
    Western US
    Alex,

    Good point. Not terribly reassuring if you are a hemophiliac either. Has anyone done a review to determine if hemophiliacs get any of the suspected diseases more frequently?
  12. CBS

    CBS Senior Member

    Messages:
    1,364
    Likes:
    246
    Western US
    This is a first- I'm replying to my own quote:

    Haemophilia. 2010 May;16(3):427-36. Epub 2009 Nov 11.
    Malignancy in patients with haemophilia: a review of the literature.

    Dunn AL.
    Aflac Cancer Center and Blood Disorders Service/Children's Healthcare of Atlanta/Emory University, Atlanta, USA. amy.dunn@choa.org
    Abstract

    Haemophilia A and B are rare X-linked conditions. Elevated rates of HIV and hepatitis C related malignancies in these patients are well reported, however rates of other types of cancers are not. Therefore, a retrospective literature review of cancer in patients with haemophilia was conducted. A Medline search of articles from January 1966 to July 2009 utilizing the keywords haemophilia, leukaemia, malignancy, mortality, neoplasm and cancer was performed. The articles were reviewed and additional relevant publications were located from the references. Data on age, type and severity of haemophilia, HIV status, type of malignancy and outcomes were recorded as available. Thirty-two cases of leukaemia were identified as well as 159 malignant solid tumours. Specific incidence and prevalence rates could not be calculated due to the limited nature of the information available in the reports. Many types of malignancy have been reported in persons with haemophilia irrespective of infection with HIV and hepatitis C yet prevalence and incidence rates compared to the general population remain unknown. Patients with haemophilia can manifest non infectious related malignancies and symptomatic patients should be evaluated accordingly.
  13. George

    George waitin' fer rabbits

    Messages:
    846
    Likes:
    44
    South Texas
    You are such a nut! (grins)
  14. George

    George waitin' fer rabbits

    Messages:
    846
    Likes:
    44
    South Texas
    Could you kindly volenteer to design the next phase of testing please. We need some logic and smarts injected into this crew!
  15. markmc20001

    markmc20001 Guest

    Messages:
    877
    Likes:
    80
    Simply inexcusable to ruin millions of lives because the smartest people in the world can't figure out how to manage public policy or are trying to make some extra profit for health insurers. The consequences are just not worth the potential gains.

    In fact, governments have put more time and money into hiding XMRV(with bogus psychological studies, discrediting scientists, and phony balony CFSAC meetings for 25 years) than it would have taken to fund real cures and research. These CDC characters, and UK characters, better come clean because everybody is watching now. Time to deal with reality.
  16. George

    George waitin' fer rabbits

    Messages:
    846
    Likes:
    44
    South Texas
    It's an intersting theory Alex. Since we get the first hard report for this illness in 1934 in a hospital. I think some of the first blood transfusion go back to like the 1600 but I think the first blood banks were in the early 1900's.

    Possible mouse contamination at the time could have transfered virus to humans where it did a little dance and became the wonderful parasite we all know and love today!?!
  17. CBS

    CBS Senior Member

    Messages:
    1,364
    Likes:
    246
    Western US
    More on Hemophelia & Cancer

    Turns out, the hemophilia & neoplasm relationship is heavily confounded because of HIV and Hep C (liver cancer). The rates of transfusion contracted HIV and Hep C are declining. Apparently, there are no epidemiological studies of hemophilia and cancer newer than a cohort that spanned the years 1992 - 2001.

    Without doing any sort of statistical analysis, the more recent studies cited in the above review do suggest a possible a trend towards a higher incidence of non-HIV and Hep C related cancers than would be expected in the general population.

    A 50% increase.

    More than twice as many non-HIV and Hep C related cancers.

    Might have something to do with hemophilia. It doesn't seem unreasonable to ask if HIV and Hep C aren't the only infectious agents in the blood supply.

    ETA: I couldn't find any papers on CFS and hemophilia. My guess is that unexplained fatigue and PEM in hemophilia patients is assumed to be explained by having hemophilia "with elements that do not respond to the standard therapy."

    Also - Would the methods presently used to kill HIV in donated blood also kill XMRV? This question has been asked on the forums before. I'll keep looking.
  18. CBS

    CBS Senior Member

    Messages:
    1,364
    Likes:
    246
    Western US
    From the World Federation of Hemophilia (WFH)


    Interesting that this (April 2010 - http://www.wfh.org/2/9/9_1_Statements_Advisories.htm):

    Appears to have been changed to this (May 2010):
    Nothing about potential risks in fresh blood.

    And what changed between the April and May statements?

    I suspect that this is an uneasy topic in the hemophilia world.
  19. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    507
    Los Angeles, CA
    Unlike whole blood and other blood products, plasma can be "cleaned up" between donor and recipient. This is why you can sell plasma but you can't sell your whole blood.

    The reason why volunteer blood donations are the norm, rather than paying people to donate blood, has nothing to do with saving money - blood agencies could easily pay people to donate blood without affecting the bottom line much, the costs of providing blood products are concentrated elsewhere. But if there was a monetary incentive to give blood, they'd get the "wrong kind of people" giving blood - i.e. donors who would have a motivation to lie about their risk factors.
  20. omerbasket

    omerbasket Senior Member

    Messages:
    510
    Likes:
    13
    If that's a sample taken from the same person, and that person have ME/CFS and was found negative by the WPI overy and overy in the past - it's possible that he was actually positive but the virus stayed out of his peripheral blood - or that it was in the peripheral blood but in levels that are below there level of detection of the WPI's assays - and that now he has higher levels of the virus in the blood and therefore he is found to be positive. The same about antibodies - maybe he stopped producing them then, for some reasons, and now he is producing them. It seems quite stupid, also, to use just one "pedigreed negative". I mean, the likelyhood of having 100% positives (in reality) while thinking you have 100% negatives in the "negative controls" when you use just one negative controls are much much higher than if you use, for exapmle, 20 "negative controls". And the best would be to take these controls from a group of completely healthy people who comes from a place without a known out break of ME/CFS and/or XMRV.
    I mean, again, this "false positive" might show the WPI in a bad-light - but it's very possible that they are actually correct in diganosing him as XMRV positive.

    By the way, the fact that john coffin thinks he found 2 persons that were diagnosed as MLV positive with mouse DNA is:
    a) Probably a problem in the sentence, cause it seems very odd that a human being would have a mouse DNA... So I guess that he found mouse DNA in their blood samples.
    b) Telling us nothing - because just as it could be a contaminant that came from the lab who found this person to be MLV positive, it can come from the lab of Dr. Coffin when he got to check the samples. Actually, if by some way the samples were taken from the WPI or the NCI - that declared that they have never worked with mouse in their labs - the chance of Dr. Coffin being the one infecting the samples, given that he, if I'm not mistaken (and correct me if I am) works a lot with mouse, is much higher.

See more popular forum discussions.

Share This Page