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DeFreitas 1991 Retrovirus/CFS Study

Discussion in 'XMRV Research and Replication Studies' started by Aftermath, Oct 13, 2009.

  1. fresh_eyes

    fresh_eyes happy to be here

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    mountains of north carolina
    I'd love to see this happen.
     
  2. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    CAV is Only Virus Ever Found in Animal Mitocondria

    Osler's Web said that only one other virus has ever been found inside a mitochondrion- and that was in a tobacco plant.
     
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    JerryH- I'm wondering too- is MVV DG-75 another name for JHK?
    Also, since it's been confirmed in a human cell line, has anyone looked for it in humans?
     
  4. starryeyes

    starryeyes Senior Member

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    Wow! It sure seems like CAV is very likely XMRV. I know the WPI says it isn't, but that just makes no sense.
     
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Six or more Retroviruses/Retrovirus-Hybrids associated with ME/CFIDS?

    I don't really understand why the WPI's annoucement isn't convincing to some people. For one thing, XMRV is a gammaretrovirus which is a C-type retrovirus. Osler's Web said DeFreitas went a long way toward sequencing CAV's genes and DeFreitas said it was not a C-type.

    It looks to me, as a layman, that there is a good chance there are at least 3 retroviruses present in ME/CFIDS- CAV, XMRV and JHK with perhaps John Martin's SpumaRetrovirus/Herpesvirus hybrid, HHV6A (perhaps physically containing retroviruses or sequences of retroviruses) and Michael Holmes' retrovirus (which I believe was reported on this thread to probably be a Lentivirus- as is HIV) throwing in more retroviruses and retroviruslike viruses into the etiological mix. I do realize that will challenge people's paradigm of one virus, one disease especially since no disease has yet been suspected to be caused by more than one retrovirus (as far as I know, please correct me) and the diseases that are known to be caused by retroviruses are severe- AIDS and T cell lymphomas and leukemias.
     
  6. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Ironic, I was thinking the same thing this morning. I suspect that there is more than one retrovirus that causes CFS. That might explain the variety of symptoms, different to each person. I believe CFS is not directly caused by XMRV, but is the immune system / CNS abnormal loop in response to XMRV. So the virus can go dormant, but the CFS remain. Just my theory.

    Of course, now WPI is saying 98% of CFS has XMRV, which would dispute the different retroviruses theory. But DeFreitas saw something in Bell's patients. And she could measure it differently in different patients. She found patters with the virus.

    All so interesting.

    Tina
     
  7. HowToEscape?

    HowToEscape? Senior Member

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    Apologies for being unclear on the details -- but who were the subjects in the WPI study? Were they all from Incline Villiage or otherwise had very specific symptoms?
    Since there's been so little research done into "CFS" there may be several causes for the disease, or even several related but not identical diseases.

    I'm not a scientist, but all of your comments make intuitive sense. Something both complex and powerful (in a bad way) is going on with this disease(s). If it's ever truly understood I suspect that so much will be learned that other, different diseases will become treatable. Sort of like the unexpected offshoots from the space program.
     
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Multi-retrovirus cause of ME/CFIDS?

    ME could be multifactorial in the sense that if you have one, but not two; or two, but not three viruses, you may not develop full blown ME/CFIDS (you may be asymptomatic, have idiopathic CF or maybe another disease/syndrome), but with both or all three you get ME. As Paul Cheney said "something happened in the late 70s" to cause a huge upsurge in ME cases and then a slow taper. This could be a new toxin introduced in the environment or, more likely a new pathogen or combination of pathogens, most likely a virus. If it's a virus, it's most likely a retrovirus.
     
  9. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    The patients were from four practices around the country- Peterson in Nevada, Levine in NYC, Cheney in NC and Klimas in Florida. They were atypical in that 20 had the otherwise rare B cell lymphomas strongly associated with ME. WPI claims they did not select patients for cancers, but if this is the case, it's a little weird that there were 20 patients with these rare ME associated cancers. The total patient cohort was 101 patients.
     
  10. VillageLife

    VillageLife Senior Member

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  11. serenity

    serenity Senior Member

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    thank you Village, i have mixed emotions about this - i have wanted to see the paper. thanks for posting.
    but this along with Dr. Bell's letter are so disheartening to me, that we may have already waited for 2 decades or longer for something that should have already come to pass while we all suffered ... it's heartbreaking for me to think about it.
    but to try to be positive, we have more & more good news coming out every day it seems. it's got to all finally come to light soon.
     
  12. starryeyes

    starryeyes Senior Member

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    If there were other retroviruses that could be causing CFS the WPI would be saying so. The equipment we have today is very refined compared to back in 1991 thanks to AIDS research and the progression of technology.

    I know the WPI explains that these are 2 different retroviruses but then that means that there are 2 retroviruses in CFS yet they aren't mentioning the other one nor looking for it.

    No matter how you look at this it smells of a cover up.
     
  13. Overstressed

    Overstressed Senior Member

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    This might be true, however, what does this actually mean ? I've talked to a well known retrovirologist from Switzerland, and he told me they have in research a PERT-test(test for reverse transcriptase), something all retrviruses share, and it doesn't simply pick-up all retrovirus infections in humans. In fact, it is not even a very sensitive test, unless you have many virus circulating in your blood, which is often NOT the case with retroviruses, especially with HTLV. A retrovirolgist here in Belgium, studying HTLV performed a more sensitive test for detecting HTLV, but I forgot the name, it was something like leolia... That seems to be a more sensitive test for slow replicating viruses. But if it's applicable for other RV's ?

    What has been confirmed, is that if the virus is only in cells, there is no test to find out, at least, that's what I understood. I don't know if you can get there through culturing, but I thought it was not possible.

    OS.
     
  14. starryeyes

    starryeyes Senior Member

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    Hi Overstressed, welcome to Phoenix Rising. :Retro smile:

    I may be misunderstanding your post but if I do understand it.. (I'm not doing well at all today) then how on earth was DeFreitas able to find CAV multiple times in different patients with CFS in 1991?

    At any rate, according to this PWC have 2 or 3 retroviruses that could be the cause of CFS:

    Read more at Suite101: CFS/ME and Retroviruses: New XMRV Study Not The First To Find a Retroviral Link http://chronic-fatigue-syndrome.suite101.com/article.cfm/cfsme_and_retroviruses#ixzz0nHMoFDST

    Perhaps those with CFS who are testing negative to XMRV have 1 or 2 of these other retroviruses.

    Perhaps all of us have different combinations of them explaining subgroups of CFS. No matter how you slice it, these other retroviruses were found in PWC.
     
  15. oerganix

    oerganix Senior Member

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    DeFreitas' retrovirus

    Maybe off topic, but I've had this on my mind for some time, so here goes.

    It's just a "rumor" as I don't remember where I read it, but somewhere I read that CAA held the blinding information for the failed DeFreitas experiments, where it was claimed that she couldn't differentiate the controls from the infected.

    Has anyone any information about this? With their weird behavior I am prone to be paranoid about CAA's involvement in that, so I can't stop wondering if maybe they did something to make her discoveries "go away".

    Vernon's weird responses to XMRV etc have only fueled my speculations on this. Anyone?
     
  16. starryeyes

    starryeyes Senior Member

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    People said earlier in this thread that the CAA did have a hand in damaging the reputation of Defreitas as documented in Osler's Web. The CAA just keeps popping up everywhere.. I thought I could get away from their influence here in this subforum.. yikes.

    What does this mean? What is "blinding information"?

    Can you explain this better? Like how did Vernon's responses fuel your speculations that the CAA holds "blinding information"?

    ETA:
    Well they have made her discovery of a retrovirus in CFS go away, haven't they? What they did was explain that her retrovirus is not XMRV and then they told us to never bring up her discovery again and they certainly aren't. And by "they" I mean Dr. Bell, the WPI etc... The people I revere the most.

    I find all this very confusing and intriguing.
     
  17. jspotila

    jspotila Senior Member

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    To my knowledge, the Association did not have any blinding information on samples run by Dr. DeFreitas. The Association certainly did not do anything to make Dr. DeFreitas's discovery "go away." The Association was funding her research, and continued to do so until she was forced to leave research because of her health and the loss of her equipment in Hurricane Andrew. Interest in her work among researchers was negatively affected by the failure of several labs to distinguish CFS patients from controls using Dr. DeFreitas's methods.

    My recollection is that it was WPI that said that XMRV was not the same virus as the one found by Dr. DeFreitas. The Association was not the origin of that statement.
     
  18. starryeyes

    starryeyes Senior Member

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    Jennie,

    This much I do know:

    http://www.ncf-net.org/forum/revelations.html

    Must history repeat itself so closely? Wasn't it the CAA who spilled the beans about XMRV sooner than the WPI wanted?

    Surely you're aware of this Jennie, since you're on the Board at the CAA.

    http://www.jabs.org.uk/forum/topic.asp?TOPIC_ID=4533

    http://www.ncf-net.org/forum/ncftruths.html


    In And The Band Played On, the CDC refused to purchase an electron microscope which is why it took them so long to find HIV.

    Dejavu anyone?

    Still got that dejavu going? ;)
    Sure. They just couldn't replicate DeFreitas's work. The CDC couldn't afford to send any virologists out to DeFreitas to learn how to find the retrovirus either. Gee. It's obviously all DeFreitas's fault. She must not have known what she was looking at. It couldn't have been their methodologies that were wrong, nor their cohorts could it? Nah.. must be all just a wrong perception by DeFreitas et al.

    http://aboutmecfs.org/Rsrch/RetrovirusFirst.aspx

    Nobody on this thread has said that the CAA stated that.

    At the last CFSAC it came up that no researcher was able to get funding to look any further for a retrovirus in CFS after DeFreitas was maligned and abandoned. Researchers could not get grant money from the CDC nor from the CAA for retroviral research so it took private funding to find XMRV. The the CAA had the gall to expose that info early and then discount it publicly later on.

    We're supposed to be fine with this and view the CAA as our advocacy group?
     
  19. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    "State Terrorism"

    In Osler's Web it said, for the first round (everyone but DeFreitas' results) that Gunn, Bell and Komoroff met at Komoroff's office to break the code and that seven other parties were on a conference call with them. I couldn't find the part where DeFreitas later came in with her own results. So, it sounded like Gunn, Bell and/or Komoroff had the codes (but it wasn't totally clear to me).

    While looking that up I came across (on p. 614) that after Folks declined DeFreitas' invite to come to Wistar to try to get them synced up, that she offered to come down to CDC at her own (or Wistar's) expense to work in CDC's lab and get CDC's failure to find the retrovirus cleared up and Folks refused that offer too. I forgot about that.

    Byron Hyde labeled CDC's subsequent attempt to bury DeFreitas' retrovirus research "state terrorism". Got to hand it to Byron Hyde; he makes me look understated. :innocent1: :victory: :victory:
     
  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Have Dr. Bell and WPI been discouraging talk about DeFreitas' retrovirus? Can you expand on that?

    I would really like some more work on DeFreitas' rv.
     

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