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TWiV 151 (CFIDS, CFI)

Discussion in 'General ME/CFS News' started by Waverunner, Oct 2, 2011.

  1. Waverunner

    Waverunner Senior Member

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    Prof. Vincent Racaniello spoke to Klimas, Silverman, Batesman and a lot of CFS patients. I think he shows a lot of integrity by having done this. Vincent even wanted to invite some CFS patients to his show but Alan is against it ("I think we should wait.."). Alan really seems to think that every CFS patient is a nutcase, he doesn't say so but you can feel it :D I really enjoyed listening to Vincent when he talked about his encounters during the first 10 minutes.

    http://www.virology.ws/2011/10/02/twiv-151-dear-twivers/
     
  2. Firestormm

    Firestormm Guest

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    Thanks. I tend to listen in to his podcasts too. This one just come up I guess? His blogs are also quite informative I find. Will have a listen.
     
  3. Waverunner

    Waverunner Senior Member

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    I really enjoy listening to TWiV most of the time but I think that they should include more things that are relevant for patients / have practical relevance. I would also love to hear what they think would help against a normal cold or the flu. There are so many conflicting studies out there but I remember one which said that 75mg of zinc per day can shorten the duration of the flu strongly. Maybe their are other possibilities to shorten the duration as well.
     
  4. Firestormm

    Firestormm Guest

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    Yeah I think that kind of question was put to them on the Contaminated episode. He said he would look to do more I think.

    Seems the podcast isn't playing at present. Will check again later.
     
  5. barbc56

    barbc56 Senior Member

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    I have become a fan of TWIW during the last several months. I think Professor Vincent Racaniello will be a great contributor to CFS/ME. I didn't get the feeling that Alan Dove thinks EVERY ME/CFS is crazy. My take is that they want they to wait until after the Liptin Study is finished.

    I found the comments about using AVs/ immunemodulators informative.
     
  6. eric_s

    eric_s Senior Member

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    Wow, i was surprised by this. To be honest, i stopped listening to TWiV and visiting the website some time ago, because i didn't like some things i've heard/read there, but i think it's very good news Prof. Racaniello ist getting involved in ME/CFS. Things seem to be moving. There seems to be more money and also more scientists coming in. I think he deserves our respect.
     
  7. Christopher

    Christopher Senior Member

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    can someone highlight the main points.
     
  8. Waverunner

    Waverunner Senior Member

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    Vincent just talked about his visit to a CFIDS Meeting and his encounters with physicians and patients. Nothing special but these people (including patients) seemed to have made a very good impression on him in contrast to some of the pro XMRV commenters on his blog.
     
  9. Firestormm

    Firestormm Guest

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    I will try and transcribe if I can Chris. Give me some time though - a few things happening today as you are probably now aware...

    I believe Prof Racaniello is a member of one CFIDS is he not Waverunner? Will have to check...

    Edit:

    Ah yes a member of CAAs Scientific Advisory Board: http://www.cfids.org/research/scientific-advisory-board2011.pdf

    Chris - I want to transcribe the Contamination TwiV also - so will add this one to the pile ;)
     
  10. Waverunner

    Waverunner Senior Member

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    Firestormm, thanks for that information. I didn't know that he was on the scientific advisory board but I'm really happy that he is.
     
  11. Firestormm

    Firestormm Guest

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    No problem. For once the old brain cell decided to work ;)
     
  12. eric_s

    eric_s Senior Member

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    He also said that it struck him (don't remember if he used that verb) that many PWCs can remember the exact date when it started with some sort of infection. I think it helps us a lot if people hear that from somebody like Dr. Racaniello. He has many listeners. And if he is going to do an episode or an article about ME/CFS that will reach many people and they will believe him.
     
  13. Waverunner

    Waverunner Senior Member

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    Ye, exactly. I think this was very important. I believe that these patients convinced him a little bit that there actually could be more about an infectious implication and/or immune component of CFS.
     
  14. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    You can download this, and perhaps it would run more smoothly?

    GG
     
  15. Firestormm

    Firestormm Guest

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    Thanks. Sorry I lost the plot and forgot - Doh! Will do so now.

    I did notice some comments had been posted and one that exacted a reply from the Professor which seems to contain several 'theories' doing the rounds at present:

    http://www.twiv.tv/2011/10/02/twiv-151-dear-twivers/#comment-325127347

    From 'Fry':

    'Sorry Professor, but patients know that the WPI and NCI discovered HGRVs. XMRV was the wrong name, although of the human gammaretroviruses they discovered some will have a xenotropic host range.

    As all the negative papers, including the blood group, used assays that had only been shown capable of detecting VP62, which does not exist in nature, and not theses viruses, everything is explained.

    The WPI and NCI assays of course do not count in this instance as there was no Trizol used with the PBMCs and culture times that those assays do require was not given by the blood group. After all they were trying to protect the blood supply with a fast high throughput assay, not a reliable test for positives that takes times and it seems Trizol.

    The CFIDS Ass have less than 1% of patients as members in the US, so they cannot claim to represent patients on any scale and even now have claimed they are switching to research, but how can they when the definitions they use for the disease don't require any symptoms, signs, or more importantly objective measures.

    Most experienced ME scientists would also say this disease is not complicated at all. The WPI and NCI/Ruscetii are however making incredible steps forward, as their research has been confirmed by Lo et al. and Hanson.

    It is interesting that you mention Lipkin is now doing deep sequencing for XMRV, will that include the human gammaretroviruses the WPI and NCI discovered? However, this really puts Lipkin is a new light, as if he is doing his own research he now has a conflict of interest regarding the multi lab study.

    Really he should not be heading that up with this conflict and the Chronic fatigue initiative conflict of interest. '

    Professor Racaniello:

    'Your comments should be deleted because they don't contain a shred of truth. Your query "It is interesting that you mention Lipkin is now doing deep sequencing for XMRV, will that include the human ammaretroviruses the WPI and NCI discovered?" reveals that you don't understand the basis of deep sequencing. However I'm leaving the comment here so that others can see the misinformation that pervades discussion of CFS. '

    Anyway, I will listen to the podcast now. Thanks :cool:
     
  16. Firestormm

    Firestormm Guest

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    OK. My attempt at a transcript follows. I can't always follow the conversations just by trying to listen so I tend to type them out if I can. Don't take this as verbatum for heaven's sake - my skills in this regard are hopeless lol.

    Oh let me know if any of those emails are relevant. I am listening to them later:

    'TWiV 151: Dear TWiVers: http://www.twiv.tv/2011/10/02/twiv-151-dear-twivers/#comment-325127347

    2 October 2011

    Professor Vincent Racaniello:

    I spent the last few days at the Scientific Advisory Board meeting of the Chronic Fatigue Immune Dysfunction Syndrome Association of America, so Im spending time working on this disease and I am concerned about it. And I met there many patients with the disease and to each one they recognise that XMRV is over. They were patients and they were parents of children with the disease and again all of them understand that XMRV and CFS [i.e. the association or link] is finished.

    Alan Dove: How was that meeting?

    VR: Great meeting. The best part for me was meeting people with CFS.

    AD: Yeah. I would think so

    VR: A variety of mainly people in their thirties and forties, who had started careers and then were disabled and cant work any longer or can only work part-time. I met a woman who was in fact a fan of TWiV who was working as a lawyer who was disabled by CFS and is now on disability, and many other individuals who cant work or do the things they want to do.
    The interesting thing is they can remember the day that it began with an infection of some kind. So maybe, any kind of infection triggers an immune response that is abnormalfiguring out what that is is what we have to do.
    I met a lot of the physicians, a number of the physicians who treat CFS patients Dr Nancy Klimas from the University of Miami was one of themshe was thereand also Dr Sidney Bateman from the University of Utah both very dedicated physicians who care about these patients and have got clinics up and running and are also doing clinical research to try and find out what is going on.
    So the CFIDS Association is trying to sort out how to support the best researchhow to raise money and then support the best research to find a cause and eventually a cure.

    AD: Cool

    VR: So Im happy to participate in that and I dont get paid for this it is my time I am giving to this organisation, and I was introduced to this organisation through blogging and podcasting. They realised were dedicated to this so I was asked as a virologist to join. I might add I also met Dr Robert Silverman, who has been on a number of these XMRV papers, in fact who authored the retraction we discussed last week.

    RC: A real gentleman, Bob.

    VR: Hes a good guy, actually he says Hi Rich

    RC: Thank you. Hi back.

    VR: And he is a very nice fellow.

    RC: His brother works upstairs here.

    VR: Thats what he told me. And you know you cannot tell what a person is like through emails.

    RC: No.

    VR: Not at all.

    RC: I have always had the greatest respect for Bob let me tell you.

    VR: Yeah Bobs a good guy. So hes also a member of the Board [Scientific Advisory CFIDS] and you know we are going to meet periodically and try and figure out how to crack this it is not going to be easy. I think it is quite a complicated disease but I am very impressed [from the virologists perspective] by its effect on these individuals there were also parents there whose children have the disease and theyre very active in trying to figure out whats going on, and so I think we should probably have an episode on CFS where we get a couple of the patients to talk about it and we talk with the CFIDS CEO and find out how theyre dealing with it

    AD: Thatd be great.

    RC: I think we should wait for the last bit of the XMRV thing to die-down first?

    VC: Yeah probably after the ahh

    RC/AD: Maybe sometime next year after the Lipkin study comes out

    AD: You know I have to wonder about all these samples being collected in a very controlled blinded fashion etc. for the Lipkin study I am left wondering if a deep sequencing effort on those things might not

    RC: Well hes actually going to be doing that for another Foundation I believe

    VC: So there is another Foundation called the Chronic Fatigue Initiative and you can find that on the web: CFI. And theyve given a large amount of money to Columbia, Harvard, Stanford and Miami and here at Columbia they are recruiting 200 patients and 200 controls and Ian Lipkin will be deep sequencing and looking for pathogens and they will be establishing a Biobank of samples for use by other people, so its not going to be any one Foundation that is going to be doing this so it is good that a second one is come into this..

    RC: Well thats good and as we all know now from all the experience, having a number of different laboratories involved in taking a number of different approaches is important for getting at the real truth.

    AD: Yes.

    VC: I understand by the way that another paper is imminent. It is not the Lipkin paper it is something else. So it will be out in the next couple of weeks

    RC: Right...

    VC: be telling you about it. Right lets do some emails'

    p.s. it isn't always obvious if Rich or Alan are talking btw ;)
     
  17. Firestormm

    Firestormm Guest

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    Morning,

    Just heard they also post their own transcriptions! I had no idea. Would have saved me a few jobs over the last year or so. Will try and dig out the links when the next episode comes around.

    Especially the Lipkin Study - this 'new paper' he spoke about - both are bound to be covered I guess; and of course the CFS Episode.
     
  18. markmc20001

    markmc20001 Guest

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    I consider the HGRV reseach Pro-patient. Until that XMRV news, no bio-medical research had been on the horizon. Only thing we had was Wessley, Reeves, and the CAA pushing CBT/GET.

    I consider it very disturbing the Professor Vincient Ranciello sent a "XMRV false positive" tee shirt email to Dr Deckoff Jones recently. Apparently there is no way to vote out the board of the CAA, but if I could. I would vote Ranciello out second. Right after Kimberly McCleary. Very damaging to the community to behave that way as a board member of the advocacy organization.

     
  19. Firestormm

    Firestormm Guest

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    Re the T Shirt. Prof Racaniello did not send that email. Jamie had an email alert/subscription and it flagged it exactly as it did for me too. That is all.
     
  20. markmc20001

    markmc20001 Guest

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    She felt it was "like a burning cross" in her front yard, that's all.
     

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