Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Annette Whittemore on Nevada Newsmakers again

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Jemal, Aug 31, 2011.

  1. Jemal

    Jemal Senior Member

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  2. alex3619

    alex3619 Senior Member

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    Hi Jemal, I saw this some hours ago. Annette Whittemore discusses one or two very sick patients making major recoveries, from wheelchair to out and about recoveries. She also talks about Andrea's improvement. Toward the end she discusses the research money coming from competitions. Overall this is an uplifting interview. Bye, Alex
     
  3. Jenny

    Jenny Senior Member

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    I wish I could feel more positive about this. We get so many doctors and clinics reporting on how their patients have improved, but this progress is rarely reflected in reports from individual patients (on here for example). And it saddens me to see how little progress has been made on treatments - Annette mentions immunoglobulins, but this treatment was being given to patients in the UK in the early 1980s (I was offered it but my doc was concerned about what unknown viruses it might contain (rightly as it turned out)). Hopefully this stuff is less dangerous now though.

    But I guess we can't hope for much more at this stage.

    Jenny
     
  4. Esther12

    Esther12 Senior Member

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    I share Jenny's instinctive scepticism about the claims of successful treatments which swirl around CFS.

    For the WPI, it's the Lipkin and BWG results which matter. If they don't come back positive, the WPI is going to really struggle.
     
  5. Jemal

    Jemal Senior Member

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    I agree this would be a blow for them. However, if they manage to structurally and successfully treat patients this would still be big news, I think...
    (so not just individual cases and patients should really improve).

    In the end I don't truly care what's wrong with me. I am waiting for a successful treatment, that could be made available to doctors all over the world!
     
  6. eric_s

    eric_s Senior Member

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    Thanks, it's always good to see these interviews. I just wish we would know about the BWG results, even though i'm a bit nervous about them (but it's not that i expect them to be negative). Even if everything else they talk about is very interesting, to me it's not what really matters (i don't mean to be ungrateful though).
     
  7. eric_s

    eric_s Senior Member

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    What i liked a lot is that there seems to be a lot of support for the WPI in Nevada. This energy company that has made a donation, Nevada Newsmakers is donating the advertising space or something like that and Sam Shad said that a lot of politicians, influential people, etc. come to the fundraising event. Would the WPI get all that support if they were wrong? It's hard to believe.
     
  8. Esther12

    Esther12 Senior Member

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    The Whittermore's are big dogs in Nevada. With CFS, we know how politics can influence what science gets support. Hopefully we'll get the results from the BWG soon.
     
  9. liquid sky

    liquid sky Senior Member

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    If politics were influencing their support, we would actually see them getting grant money. Instead we see the grant process trying to starve them for money.

    This was an encouraging interview. If they can show that treatments work, drug trials will follow. She also promised to share their knowledge of treatment with other doctors so we can be treated locally. I only wish it could happen faster.
     
  10. eric_s

    eric_s Senior Member

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    Yes, but now assume the WPI has got it wrong. What would that do to the Whittemore family's reputation and relationships with these people? Also all the politicians, donors, etc. who have been supporting the WPI there would look rather stupid. So i hope the Whittemores and also all these other people, because they are certainly aware of this risk, have made as sure as possible that they are not wrong. This is no guarantee, of course, but it makes me feel better to know they have much support (of course i "only" have Sam Shad's word for it, i don't know who really goes there). They don't look like they are near the end. But sure, things can probably change rapidly.
     
  11. eric_s

    eric_s Senior Member

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    I'm really only guessing, but i would guess that somebody like Senator Reid, who has spoken at the opening of the building where the WPI is located, has asked Harvey Whittemore a couple of times if XMRV is really there. And i would also guess that Harvey Whittemore would want to know if it's true or not and has talked with Judy Mikovits and Frank Ruscetti about XMRV many times. But of course i don't know. We really need results and also they can be wrong, so i will not necessarily believe the BWG results.
     
  12. dannybex

    dannybex Senior Member

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    I'm not sure...with the gignormous budget deficit, and cutbacks all over the place, I'm sure many institutions are 'starving' for money and grants.
     
  13. Parismountain

    Parismountain Senior Member

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    Yeah in a way it's like our economy has CFS.
     
  14. Ernie

    Ernie *****

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    Oh it's far from over. She said they are using antivirals and antiretrovirals. She also said they would be starting clinical trials soon.
     
  15. Nina

    Nina Senior Member

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    I think it's extremely sad and potentially very harmful to patients that a certain group of people (with the help of the media) has managed to create a situation where many now feel that HGRVs is the make or break for the WPI. It is not.

    The WPI has a right to be wrong and continue their research IF that was the case, which we don't know. If every researcher following a wrong lead would have to close their labs and quit, 99.99% of them would be gone by now. It's certainly not the WPI's fault that this area of research is a political minefield.

    IF (and I don't believe they are) they were wrong about HGRVs, I want them to carry on for as long as it takes to find the cause(s) and treatments for ALL of us. If we don't support them in this, who will?

    I'm so sick of all those bystanders and "sceptics" who do nothing to further our understanding of this disease and just keep judging and slinging mud.

    That being said, I found the interview very encouraging.
     
    Angela Kennedy likes this.
  16. glenp

    glenp "and this too shall pass"

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    I emailed Sam Shad, thanking him for the interview. I would like to KEEP him interested.

    sam@shad.reno.nv.us
     
    SOC likes this.
  17. alex3619

    alex3619 Senior Member

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    Hi Nina, you are correct in this, or should be if the world was fair: the WPI has a lot more going on than HGRVs, its just they had a breakthrough on that one. Would we have been happy if the WPI had ignored XMRV from the beginning - "must be contamination, lets ignore it?". If we found out about that, we would be hopping mad and demand they investigate it, or someone does. The WPI did entirely the right thing, regardless of how XMRV turns out. The way the world is whatever breakthrough leads to a cure is going to be hotly contested. If not HGRVs it will be something else and this is just a taste of the eventual struggle.

    So bring on the BWG and Lipkin study results. We all need the answers, whatever they are.

    Bye
    Alex
     
  18. alex3619

    alex3619 Senior Member

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    Hi glenp, when I was watching the clip I thought of doing this, but I forgot. I just rectified that with a quick thank you email. Bye, Alex
     
  19. markmc20001

    markmc20001 Guest

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    Great news to hear people are getting out of wheelchairs from treatments at the WPI!

    Nice to see a little ray of reality and confirmation to me the WPI is right!!!

    I've always known the WPI wouldn't put themselves through this kind of stress (same kind of stress that Elaine Defreitas has gone through) without really wanting to help people like the WPI wants to help.

    The WPI has gotten the best gift of all, they have helped their daughter regain a level of health at an early enough age to get a shot at living!

    Let's hope the politics allow the right thing to happen now with the BWG.

    Thanks everybody working so hard to get the truth out!
     
  20. Sasha

    Sasha Fine, thank you

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    I couldn't get the video to play - it just kept hanging. I only heard the bit at the beginning when straight off the bat Annette said that the term 'CFS' was being ditched for 'ME' and talked about the ICC. Great start!

    Can someone summarise just a few high points of what she said? Just three or four sentences?
     

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