1. Patients launch a $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!
9th Invest in ME International ME Conference, 2014 - Part 1: Autoimmunity and ME
Mark Berry begins a series of articles on the 9th Invest in ME International ME Conference in London, with a look at three presentations on autoimmunity
Discuss the article on the Forums.

Viology podcast - XMRV special with Singh 8th August

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Esther12, Aug 8, 2010.

  1. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,262
    Likes:
    1,628
    London
    I've avoided a lumbar puncture so far (my neurologist wanted to do one) as other UK NHS patients have had nightmare experiences here with severe and long term reactions. Not just one or two - seems common. Could just be a NHS thing though!
  2. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    505
    Los Angeles, CA
    I just want to say again how much I appreciate the work of Vincent Racaniello and how informative and interesting his podcasts have been. I would strongly disagree with those who say he or his interviewees/panelists "don't get it" or don't have compassion for those who are ill and how desperate for answers many of us are.

    I've been re-listening to the episodes covering XMRV, way back in April in the interview with Dr. Goff they start discussing AZT and how serious the side effects are. (At that time, the only antiretroviral drug that had been shown to act against XMRV was AZT.) They mention that people with AIDS managed to take it in the early days because they were otherwise facing death; but then Dr. Racaniello adds that people with CFS would say that many of us feel their lives are ruined without having some option "it's almost the equivalent of a fatal disease", so are willing to take the risk. Dr. Goff hems a bit and then says "Well, I wouldn't take AZT unless I really knew for sure that I was viremic (i.e., actively replicating virus) and then, if I was at the end of my rope regarding the disease, I might contemplate it."

    Stem cells, hoo boy, that's a whole other kettle of fish. I don't know much about it except that it's at this point considered extremely experimental *even in HIV* which is a hugely well-studied retrovirus compared to XMRV. And that there is potential for harm. Compared to trying antiretrovirals...known and studied drugs that have already passed safety trials, despite having some ugly side effects...stem cell treatments are WAY too far out on a limb for most of us. I mean, if I were at the end of MY rope it wouldn't be the first thing I'd try. But, as I've said before, no matter the treatment, I would consider it the much more useful and responsible thing to participate in some kind of clinical trial rather than conduct a random experiment on one patient.

    I am NOT at the end of my rope yet. I think help is on the way. If you are at the end of your rope...tie a knot and HANG ON!!!!
  3. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    Racy is ok. His podcasts are great. I do think is knowledge of ME is seriously lacking, and would have hoped by now he would have found out more than he has. However, if he just keeps covering the story, that is great. He's not going to be doing any of the research, so he can help on the media front.
  4. Alesh

    Alesh Senior Member

    Messages:
    176
    Likes:
    0
    Czech Republic, EU
    I am sorry that you have such thoughts. I am most afraid of the autumn/winter which starts in October here in the meteorological sense. It's like living in the paleolithic times: I don't know if I will survive this winter. :\ We must survive, recover and "bring testimony"!
  5. Daffodil

    Daffodil Senior Member

    Messages:
    2,644
    Likes:
    632
    yes dr. goff is great, i agree.

    survive recovery and bring testimony....here here!
  6. Bob

    Bob

    Messages:
    7,451
    Likes:
    8,614
    England, UK
    Dr Ila Singh - XMRV discussion

    Here are some notes that I made while I was listening to the podcast, in case they are helpful to anyone.
    I'm afraid that I've not written them very well, but they give an indication about the subject matter discussed by Dr Singh.
    I thought there were some very interesting developments in this discussion, regarding XMRV research.

    Please don't use these notes as a source for quotes for Dr Singh, as they are only rough notes about the discussion, not quotes or a transcript.


    Dr Ila Singh
    - Clinical Pathologist
    - Department of Pathology
    - University of Utah

    Dr Singh spends 80% of her time in a research lab and rest of time in clinical labs.

    ---------------------------

    Prostate Cancer studies

    Prostate Cancer study - 233 consecutive cases of prostate cancer:

    - a quarter of samples of prostate cancer patients had XMRV

    - 6% of patients without prostate cancer had XMRV [confirmation of what we would expect in non-CFS patients]

    - unlike the original prostate cancer study, this study found XMRV in the malignant prostatic epithelium (consistent with retroviral theory of carcinogenesis) (the original study only saw the virus in stromal cells) - [This is a new development for me - I thought that XMRV had only been found in the stromal cells in prostate cancer patients]. [As I understand it, the prostate stromal cells are not actually the cancerous prostate cells - But I might be wrong about this.]

    - no association found between mutations in RNase-L and XMRV (this is different to the original prostate study) (and this lack of association has now been confirmed in a larger study, and also confirmed by Eric Klein, an author of the original study in prostate cancer, who reported the association, who also doesn't see this association in further studies - this maybe due geographical differences in patients).
    An important implication of this is that everyone maybe susceptible to XMRV, regardless of what our RNase-L genetic make up is. [interesting point]

    - Virus present in very small amounts, and very hard to detect.
    (This is likely to happen with all pathogens which are found in the future.)
    So very sensitive tests are needed.
    High specificity of tests is needed, along with strict methodologies, to eliminate contaminants and other viruses.


    XMRV is present in prostate cancers, but no causation has been proved.
    More studies are needed to understand association between prostate cancer and XMRV.

    ----------------------

    New or Ongoing Autopsy Study:

    75 consecutive male autopsies, and the same for female autopsies, are to be looked at over the period of more than a year to see if there is a correlation between XMRV and: transplant patients; immunosuppressed patients; patients with other infections; sexually transmitted diseases, etc.
    Looking at multiple tissues, not just prostate tissues.


    ----------------------

    XMRV CFS study

    XMRV CFS Study looking at 100 patients with CFS and 200 healthy volunteers, collecting fresh samples from around Salt Lake City...

    - Completely different samples (patients) from the Science paper.

    - Using a battery of different tests: Multiple PCR tests; RTPCR tests looking for viral RNA; and some of the same tests as the Science paper used - take human plasma and add it to LNCaP cells, and culturing the cells.

    - Diagnostic criteria for study: [we] "used different criteria" ... "fukuda criteria etc". [My own interpretation of this is that 'different' means more than one criteria] [i.e. does she mean fukuda + Canadian consensus criteria ?] [Dr Singh was not specific about which criteria she is using, apart from saying "different criteria" and "fukuda etc".]

    - Categorising different severity groups: Very Severe, moderately severe and the most functioning group, taking into account how people adapt their lifestyles to minimise symptoms.

    - Looking at white blood cells, plasma, antibodies in the serum, a whole blood assay. ("using every fraction of peripheral blood that we can look at").


    Regarding swapping samples with WPI.

    Judy Mikovits ... has been kind enough to make arrangements to give us samples... This is how it's happening: She gives us names of people who are +ve for XMRV in their hands and people who are -ve for XMRV in their hands to the phlebotomy service, and then the phlebotomy service sends the samples straight to us so that our study can not be contaminated from any XMRV which the Mikovits lab have growing in their labs, and these samples are coded, and the study is completely blinded.


    ------------------------------------

    FDA approval for anti-retrovirals.

    We are talking right now to Merck to start a clinical trial, for CFS patients.
    The reason to do that is that a lot of patients are already taking these drugs, and blogging about it on the web.
    We are in the very early stages of talking and it may not materialise in the form of a clinical trial.
    Difficult to measure outcome of anti-retrovirals because CFS is a relapsing/remitting illness.
    We could measure viral loads before and after. It's difficult.

    The people who are affected by this [CFS] are desperate for some kind of treatment.
    Yes, i sense that desperation in the blogs and the people who write to me all the time, but really it is too early in the game to even know what this virus is doing... These drugs are not without their side effects.
  7. sensing progress

    sensing progress Senior Member

    Messages:
    296
    Likes:
    9
    Tucson, AZ
    If you read between the lines here, doesn't this indicate that they (Dr. Singh) are finding XMRV in CFS patients? Otherwise, there wouldn't be discussion with Merck on possibly doing a trial. That's what it seems like to me at least.
  8. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    505
    Los Angeles, CA
    Hard to say at what point Dr. Singh is at in her own research or what she's personally seen yet in CFS patients.

    Listening between the lines is a fun hobby for the housebound :sofa: ... it certainly sounds to me like the retrovirologists working on XMRV who have made statements in recent months (1) are hot on the trail of something and very excited/intrigued; (2) have probably heard the scuttlebutt about not-quite-published-yet research, (3) and are expressing less and less caution of the "well, there have been negative studies..." variety.
  9. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    Good analysis sensing progress and urbantravels
  10. Otis

    Otis SeƱor Mumbler

    Messages:
    1,116
    Likes:
    115
    USA
    When you combine this tidbit with the word we got months(?) ago that Dr. Bateman's study (in collaboration with Dr. Singh) was expanded I believe they're finding XMRV in ME/CFS.
  11. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    It should be very interesting to see what numbers crop up in a Fukuda study, once we have a replication study out.
  12. akrasia

    akrasia Senior Member

    Messages:
    156
    Likes:
    179
    Ila Singh said:
    We are talking right now to Merck to start a clinical trial, for CFS patients.
    The reason to do that is that a lot of patients are already taking these drugs, and blogging about it on the web.



    Now this isn't really true. Only a couple of people on this site and Jamie Deckoff Jones have tried ARVs. Perhaps there are others I'm not aware of. What there isn't is "a lot."

    It's interesting that she uses this as the rationale for starting trials.

    Basically what she is saying is that they are responding to "patient pressure."

    "Patient Pressure" should be the name of an advocacy group.
  13. leaves

    leaves Senior Member

    Messages:
    1,193
    Likes:
    14
    ssssssssssssh

    ;-)
  14. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    505
    Los Angeles, CA
    I don't think she said "a lot" of patients are doing this. I think she said "patients are" or "some patients are."
  15. akrasia

    akrasia Senior Member

    Messages:
    156
    Likes:
    179
    I was quoting from the posted transcript.

    My point was that Singh feels the urgency people with the illness feel and that's a very good thing. How she justifies it, whether it's several patients or just a few, it shows a great sympathy for us. And respect.

    If people are going to do ARVs, she sees it as incumbent on her and the medical world to evolve good protocols. XMRV positivity in CFS is being taken as a given. This is remarkable.
  16. Bob

    Bob

    Messages:
    7,451
    Likes:
    8,614
    England, UK
    I've made a transcript of this short section of the podcast, as it has sparked some discussion...

    (Please note that my notes that I posted earlier are not a transcript - they are just rough notes that I made while listening to the podcast.)

    Transcript

    at 36 mins 47 secs

  17. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

    Messages:
    913
    Likes:
    327
    Brisbane, Aust
    Does this mean there are no other trials going on?
  18. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

    Messages:
    913
    Likes:
    327
    Brisbane, Aust
    This is not very hopeful. Other trials will run into same problem. Coupled with slow replication of XMRV (meaning that reservoirs may be quite hard to clean up, and it may take a long time for ARVs to have a major impact on an infection. Those taking ARVs will have to be very patient.
  19. Sam Carter

    Sam Carter Guest

    Messages:
    296
    Likes:
    184
    Is this your guy, RustyJ?

    Dr. Steven J. Robbins - Potential animal (zoonotic) virus identified in patients with Chronic Fatigue Syndrome, Multiple Sclerosis and Epilepsy.
  20. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

    Messages:
    913
    Likes:
    327
    Brisbane, Aust
    Wow!! It is my guy. Thank you very much, Sam. This is a part of my life I had put away in a cupboard - just after early onset when I was really trying to come to terms with the illness, still trying to keep my career together. It really does feel like it was another lifetime.

    I did a google search some years ago, obviously pre-2006, and came up with very little. I was too tired the other day to try another search, when I mentioned in this thread. Robbins has been beavering away for more than a decade on his Brisbane findings. Not really sure what they mean. The guy seemed genuine, but was scraping for funding and some of the things he was doing re the LPs was not by the book (we had to sign waivers etc). He did not provide any feedback other than to say he had found his mysterious virus in my spinal fluid.

    I understand and emphathise with those people who were picked up by Defreitas and then left dangling.

    I had the impression there were more than 18 in Brisbane. But I could be mistaken. Perhaps there are others out there who were part of his cohorts who could let me know if they have further info on his work.

    The virus could be opportunistic. Sample size is small. Don't know if it can do the things XMRV can do. Will have to do a bit of googling myself. I guess it is possible that a subset of CFS could be caused by this Cryptovirus, simply because there were two separate clusters on the opposite sides of the globe.

    Appreciate the effort Sam, thanks again.

See more popular forum discussions.

Share This Page