1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 18th March 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Question concerning XMRV

Discussion in 'ME/CFS research' started by Inara, Nov 6, 2017.

  1. Inara

    Inara Senior Member (Voting Rights)

    Messages:
    2,734
    Don't know what that is. :(
     
  2. lansbergen

    lansbergen Senior Member (Voting Rights)

    Messages:
    616
    It would have to be a situation where the immune system is chronically trying to overcome the virus but never quite managing despite the immune reaction producing severe symptoms.

    That is what I think is happening but something much smaller than a virus..
     
    Inara and Allele like this.
  3. lansbergen

    lansbergen Senior Member (Voting Rights)

    Messages:
    616
    Cell danger response
     
    Inara likes this.
  4. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    13,274
    Location:
    London, UK
    Shingles in childhood is very uncommon. It will occur in young people who have immunodeficiency because of chemotherapy for leukaemia for instance. There may be very rare cases in otherwise healthy children but extremely rare I think.
     
    Inara likes this.
  5. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    6,262
    Thanks @Jonathan Edwards . Our GP just shrugged their shoulders and did not think it worth any further investigation . It has always seemed unusual.

    We have a number of dots that havn' t been joined, and i think that may not be uncommon for ME: it is the sum of insults, in our case with glandular fever as deciding factor. That shingles has been in medical history may suggest an issue with viral immune mode.
     
    Allele and Inara like this.
  6. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    13,274
    Location:
    London, UK

    Proven shingles in a 9/10 year old should definitely be investigated by a clinical immunologist for immunodeficiency syndromes.
     
    andypants and Inara like this.
  7. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    6,262
    thank you. it seems i am not completely barmy after all!
     
    andypants and Trish like this.
  8. Inara

    Inara Senior Member (Voting Rights)

    Messages:
    2,734
    Chickenpox (that's the same virus in shingles, Varizella Zoster) is very common in children.

    Edit: But you mean shingles itself, not chickenpox?
     
  9. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    6,262
    I meant shingles
    chickenpox age 4 years
    shingles 9/10 years
    Always seemed weird, but by GP responses ( not overly bothered), I did not take it as being problematic....
     
    andypants and Inara like this.
  10. YaS

    YaS Established Member (Voting Rights)

    Messages:
    74
    Some food for thought:

    Hempel HA, Burns KH, De Marzo AM, Sfanos KS. “Infection of Xenotransplanted Human Cell Lines by Murine Retroviruses: A Lesson Brought Back to Light by XMRV”, Front Oncol. 2013, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3683812/


    Christine A. Kozak:
    Origins of the Endogenous and Infectious Laboratory Mouse Gammaretroviruses
    http://www.mdpi.com/1999-4915/7/1/1


    Delviks-Frankenberry K1, Paprotka T, Cingöz O, Wildt S, Hu WS,Coffin JM, Pathak VK:
    Generation of multiple replication-competent retroviruses through recombination between PreXMRV-1 and PreXMRV-2.
    https://www.ncbi.nlm.nih.gov/pubmed/23966380


    to put these articles into perspective:


    Retroviruses: Poorly Understood Agents of Change
    Investigating the alarming rise of chronic inflammatory diseases
    By Judy A. Mikovits, PhD
    https://worldmercuryproject.org/news/retroviruses-poorly-understood-agents-of-change/

    https://worldmercuryproject.org/new...o-mass-vaccination-against-influenza-in-1976/
    by James Lyons-Weiler, Ph.D.
     
    Last edited: Jun 16, 2018
    Inara and andypants like this.
  11. Melanie

    Melanie Senior Member (Voting Rights)

    Messages:
    439
    Hi, @Inara.

    I didn't read every page but I do enjoy reviewing from time to time an analysis of the Mikovitz findings done by Abbie Smith. (It's pretty brutal and includes science I don't understand although she is good at explaining things.) MEpedia> XMRV > Learn more > Abbie Smith ERV blog series of XMRV research

    Also, this review of Osler's Web, which includes de Freitas, in Newsweek 'A Chronic Fatigue Cover-Up?'. "With sporadic funding from patient activists, de Freitas spends five years pursuing the possibility that CFS involves a previously unknown retrovirus (the class of virus that includes HIV). She turns up tantalizing signs that it may, but when the CDC publishes a paper saying it has been unable to replicate her findings, her support evaporates. By early 1995, the saga has cost Cheney and Bell their marriages, and a regretful de Freitas fears her career as a scientist is finished. The book closes with the image of an infectious disease spreading unchecked as an arrogant medical establishment looks the other way." - "De Freitas still suspects a novel retrovirusand maintains that the government would have confirmed her findings had it used her methods--but viruses may well prove irrelevant."

    Hope this helps.

    Edit: Abbie wrote this too. If you poke around enough you can find all she wrote on XMRV. XMRV Update: The science

    Edit: And this one is a SCREAM!
    Love letter from the Whittemore Peterson Institute
     
    Last edited: Jun 15, 2018
    Inara and Allele like this.
  12. Melanie

    Melanie Senior Member (Voting Rights)

    Messages:
    439
    So, buried somewhere in one of the Abbie Smith blog posts is this: Human blood serum NEUTRALIZES XMRV, it just does NOT infect humans.

    Also, I believe it was Silverman (don't hold me to that) that SENT XMRV to Mikovitz for her research. Well, the XMRV already had a mutation. So when Silverman went to replicate her work he found there was a mutation that should not have been there. The virus ALREADY HAD A MUTATION and that was this EXACT mutation the XMRV Mikovitz had in the XMRV sent to her. So, I think that was why Silverman retracted his name from the paper as the paper had not been retracted yet. If they had just found XMRV in blood samples from every patient, why did they all have the EXACT mutation that were in the samples sent to her.

    Now, I believe Mikovitz denies ever getting samples from someone else.

    Silverman denies contamination and so does Mikovitz. Which can only mean one thing, tampering. As one commenter on one of the blog posts said, it is like "salting" an excavation site. If you are ecavating burial grounds and you really want that grant to further your work, you place bones there. It is also like a woman who had dogs that would always find bone fragments during forensic searches. She had bone fragments for training and would plant them for her dogs to find. She and her dogs were HEROES! And then they figured out what was going on and also the dogs were being kept in her home in despicable inhumane conditions and they had to be taken from her.

    Also, Mikovitz was really interested in Autism research and tying XMRV into that and so she had another motive and COI.
     
    Inara likes this.
  13. duncan

    duncan Senior Member (Voting Rights)

    Messages:
    1,572
    @Melanie, do you recall how Smith was perceived back then? Were you there? Do you have a feel for the context?

    As I remember, it did not all fall so neatly into place...
     
    Inara and Amw66 like this.
  14. Melanie

    Melanie Senior Member (Voting Rights)

    Messages:
    439
    She was perceived as evil, cruel, trying to thwart CFS research, etc. No?
     
    Inara likes this.
  15. duncan

    duncan Senior Member (Voting Rights)

    Messages:
    1,572
    Are you guessing or did you experience it all?
     
    Inara likes this.
  16. Melanie

    Melanie Senior Member (Voting Rights)

    Messages:
    439
    I read the comments section. But do tell.

    In fact, she was dead on right.
     
    Inara likes this.
  17. duncan

    duncan Senior Member (Voting Rights)

    Messages:
    1,572
    Nothing is as clear cut as some versions of history say.

    I recall the stark consternation at attempts of trial replication. I recall the strange attacks.

    I don't think it is black and white.
     
    Last edited by a moderator: Jun 16, 2018
    Inara and lansbergen like this.
  18. Melanie

    Melanie Senior Member (Voting Rights)

    Messages:
    439
    Spit it out or stop replying to me.

    I do know that I heard of XMRV when the news first broke and never bought into it without being in the loop with ME/CFS forums and Twitter. Never. It just made no sense that I had a "mouse virus".
     
    Inara likes this.
  19. duncan

    duncan Senior Member (Voting Rights)

    Messages:
    1,572
    Oh dear!

    I never meant to upset you.

    It may just be different to live through something as opposed to hearing about it.
     
    Inara, Amw66 and Allele like this.
  20. Melanie

    Melanie Senior Member (Voting Rights)

    Messages:
    439
    Gee sorry, at the time I was living through my 30th year of being sick, all but bedridden, my mother having to be put into LTC with dimentia, living with my mentally ill sister, trying to move to the SW, and just ending a six year battle with disability. I couldn't have followed anything anyway due to everything I was going through and chose not to anyway because I didn't buy into XMRV.
     
    Inara likes this.

Share This Page