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From the 1st annual XMRV conference

Discussion in 'XMRV Research and Replication Studies' started by George, Sep 7, 2010.

  1. VillageLife

    VillageLife Senior Member

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    more....
    ClevelandClinic #Heres link to Web cast for wrap-up Q&A session scheduled for 5:15 p.m. ET Wednesday http://ow.ly/2AMK8 #XMRV
     
  2. Bob

    Bob

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    That's 10.15pm for UK folk, tomorrow on Wednesday 8th.
    The Q&A wrap-up session includes our very own Judy Mikovits on the panel.
    http://videocast.nih.gov/summary.asp?live=9582


    5.15 PM

    Panel led Q&A session (webcast)

    Chair:
    Dr Jonathan Stoye

    Panel members:
    D. Blair
    J. Coffin
    J. Holmberg
    J. Mikovits
     
  3. VillageLife

    VillageLife Senior Member

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    An amazing day for ME CFS.

    My mum said to me today, you do understand that people honestly thought this wasn't a real illness.

    And I said to her, look how far we've come today! :)
     
  4. anciendaze

    anciendaze Senior Member

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    What I do now is fractional tasking. For example, if I am driving I ignore all irrelevant...LOOK OUT YOU FOOL!
     
  5. George

    George waitin' fer rabbits

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    (ar, ar, ar, snort, snicker, grins) CRASH, BANG!
     
  6. diamondphoenix

    diamondphoenix

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    Lol! I hope you don't mind me joining your Forum, but at this point I couldn't resist!
    You don't by any chance live near me villagelife, or hang out on Facebook, I'd sooo love to chat, think our mother's might get on famously, lol!

    On a more serious note is anyone aware of what's going on with the UK media re XMRV, the small study from Dundee was given a great fanfare on the BBC News this morning, as for XMRV, despite it's first ever annual conference beginning today, the silence is quite deafening!
    Ironically, today of all days, the Ninewells Study finds that ME 'might' be related to a virus, hello? Anyone at the BBC ever even heard of XMRV?
     
  7. Sunshine

    Sunshine Senior Member

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    11 months on since the SCIENCE paper and the BBC are still d-noticing the retrovirus.

    Hard to change a life-times habits...

    Just wait till it all kicks off.

    Kids are locked in psych units as we speak in the UK, due to being infected.

    Maybe the BBC can do a documentary on that.
     
  8. Mark

    Mark Acting CEO

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    Yes I've been thinking about them a lot today. :(

    Did anyone notice the non-disclosure thingy they made loads of psychiatry staff sign a few months ago? Convenient timing again. :Retro mad:
     
  9. Mark

    Mark Acting CEO

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    "Yes mum I do. And I'm livid about it! This is going to have to be one damn big apology, you do realise that? What's the excuse, sorry we're all idiots?"
     
  10. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Just want to share some observations.

    Number one, this conference is about Chronic Fatigue Syndrome and the fact the virus is infectious. There was no XMRV conference after it was found in prostate cancer people. Imagine that CFS is a motivating factor as much as or more than prostate cancer in getting some action.

    Secondly. Oh shucks. Happened again. I forgot my second point.

    Tina
     
  11. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Now

    Now I remember, I wanted to share with you guys how happy I am to see such a happy tone here. This thread is so uplifting and even fun.

    Think back a year. Well, think back two months ago. We were angry. Think back a year or two years ago, we were discouraged and despondent.

    Now it is as though we are all at a party.

    I congratulate all you CFS sufferers on the hope that has brought joy and fun back into your lives.

    Tina
     
  12. John Leslie

    John Leslie

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    Can anyone imagine what would be happening right now if Annette Whittemore didn't hire and fund Judy Mikovits? I have asked a lot of people in DC if she is at the conference. Does anyone know?
     
  13. LJS

    LJS Insert Witty Comment Here

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    She is there and is presenting, she is on the schedule. She will also be present in the webcast Q&A.
     
  14. George

    George waitin' fer rabbits

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    This has it's own thread

    But it's just so cool that I wanted to bring it here too. It really sounds like the higher ups think this is "it" for us. Why else would they meet with patients and patient advocates BEFORE the conference. It's like getting christmas presents in July. I mean patients made statements and it's not even a CFSAC meeting.

    It makes me all warm and fuzzy on the inside. (just like I am on the outside!)

    On September 7, 2010, at 11 am, at the NIH campus in Bethesda, MD, a group of 9 ME/CFS patients and their families met with high-up NIH officials. To my knowledge, this is the first meeting of its kind in the 27 years since I was first struck down with this illness in 1983.

    The meeting was organized by long-time CFS patient Robert Miller. The meeting's CFS participants (patients and family) included: Charlotte, Linda, Sherry, Scott, Marielle, Bobbi, Rivka, Robert and Megan. A wonderful surprise addition to the meeting was Dr. Dan Peterson, of Incline Village, NV, champion doctor of CFS patients and co-founder of the Whittemore Peterson Institute in Reno, NV.

    The meeting was held just prior to the start of the 1st International XMRV Conference sponsored by the NIH. The NIH officials present included:

    Michael Gottesman, MD
    Chief of NCI's Laboratory of Cell Biology
    and Director of the NIH Office of Intramural Research
    http://www.nih.gov/about/almanac/historical/deputy_directors.htm#gottesman

    Paul H Plotz, MD
    Chief, Arthritis and Rheumatism Branch (NIH)
    http://www.niams.nih.gov/Research/O...25&email=plotzp@mail.nih.gov &includefile=RAG

    Roland Owens, PhD
    Assistant Director of the NIH Office of Intramural Research and Chief of the Molecular Biology Section in the Laboratory of Molecular and Cellular Biology in the National Institute of Diabetes and Digestive and Kidney Diseases at NIH.
    http://jgh.hunter.cuny.edu/index.ph...phies/95-owens-roland-a-phd.html?directory=18

    These are my impressions of the meeting. Any and all mistakes, such as misrepresenting someone's words or sentiments, are all mine. And I welcome any corrections from others.

    The agenda that Robert Miller originally set for us went smoothly. It was for a half hour meeting, but in the end we were given a full hour. First, Robert had the patients go around the large table and introduce ourselves, stating how long we have been, or our family member has been, ill. Then he read a statement which included points and issues he felt needed stressing. They focused on, but were not limited to, these two key points:

    1. The need for trust building
    In the past, our government offices (NIH, CDC) have acted in ways that have eroded our trust in them, from the (rather amorphous) decades of neglect to, most recently, the highly concrete fact that Dr. Judy Mikovits, the scientist who found the link between XMRV and CFS, was excluded from the XMRV Conference line-up until patients loudly complained. Robert said that we now need our government to act in a way that engenders our trust in them.

    2. The need for funding
    Funding is needed for ME/CFS research, clinical trials, and Centers of Excellence (including WPI).

    (For the full text of Robert's statement, see Attachment #1 below.)

    After Robert made his very salient, well-written points, Dr. Peterson made a statement, and then three additional patients made theirs, each lasting about 2 minutes. (My statement is Attachment #2 below.) Honestly, embarassingly, I can't recall any of them. Though I do recall feeling very proud to be on the same side as Dr. Peterson. And I do recall feeling very moved by the patients' statements. One woman, the mother of a long-time patient, made a strong plea for attention to pediatric CFS issues.

    After Dr. Peterson and the patients spoke, it was Dr. Michael Gottesman's turn. He told us that he had talked to NIH Director Dr. Francis Collins just that morning, and that the Director wanted us to know that positive things were going to happen. "We are on track. Things will happen." He did mention that NIAID is currently setting up multi-centered clinical trials.

    Patient Questions

    After he talked, we patients started with questions. It was a 1 hour meeting, so there were many topics and I cannot recall all of them. They included (not necessarily in this order):

    Question: What power and purse strings does Gottesman have as Deputy Director of Intramural Research? He was pointedly asked, Can you make a commitment to us right now for clinical trials?

    Response: Gottesman explained that his department, Intramural Research, means research done within the NIH, not outside the NIH. Intramural Research is only 10% of the NIH budget. Intramural Research is where "higher risk" research can be done (I am not sure why he brought up that point, i.e., if it relates to us or not.)

    My impression was that he felt he did not have a lot of say in deciding on clinical trials. My impression was that he was at this meeting because Collins wanted someone high up to meet with us, but that Collins did not have the time (or inclination? or knowledge of our needs?) for the meeting.

    Others may have a different impression of the situation. Gottesman did say, in so many words, that the meeting was hastily arranged, and for the short time they had to arrange it, it was pretty good to get someone as high up as he.

    In terms of funding, he did say, "There will be more funding, and more publications."

    Question: Patients pointedly asked, Why has this illness been ignored for 2+ decades?

    Response:

    When Gottesman said it was due to a lack of concrete scientific, clinical and medical findings and published papers, patients countered that there are 5,000 scientific and medical studies on CFS already published.

    When Gottesman said that Alter's paper was the first evidence of something concrete (i.e., a virus) for CFS, patients reminded him about researcher Elaine DeFreitas and how her viral findings as a Wistar Institute virologist were ignored and even discredited by the CDC 19 years ago.

    Strangely, at least to us patients, Gottesman praised the former CFS point person Dr. Steven Strauss, saying that both the NIH and CFS patients lost a good fighter for our cause when we lost Strauss. No patients nodded their heads in agreement.

    Gottesman also seemed not to know about the disappointment patients feel regarding NIAID Director Anthony Fauci (appointed in 1984). So we told him we did not feel warm and fuzzy toward Fauci for having ghettoized us to the NIH Office of Research on Women's Health, which has no money.

    Gottesman noted how dangerous it is to take antiretrovirals when we have not done clinical trials. And before clinical trials they need to test the meds in vitro. We patients responded with the fact that there are already two published studies on antiretrovirals that work to hinder XMRV in vitro. (We sent these two studies to Gottesman via email after the meeting.)

    I think it was Dr. Peterson who talked about how patients are already doing antiretrovirals. That that is how desperate we are.

    Other Topics Covered

    We talked about how if XMRV or related viruses turn out to be a dead end (i.e., not a cause of CFS, and not a cause of anything hurtful to the body), we hope their interest in CFS will not reach a dead end, too.

    Patients discussed the pathetic name our illness was given, Chronic Fatigue Syndrome, and how that very name has contributed to families abandoning their sick family members because of disbelief that they are really sick.

    Gottesman talked about how respected Dr. Alter is and how Alter's interest in our illness and his published study will change everything for our illness. Alter, and his paper, carry a lot of weight.

    When the NIH team (Dr. Owens) said more people were needed to go into the field of CFS research, Dr. Peterson said there are many good doctors who are already working on this, but not getting funding. And patients stated that the lack of funding in general, for CFS, turns off potential researchers.

    Patients talked very concretely about how funding for CFS projects and research are selected and allocated, and how the team who approves CFS research grants is flawed (noting the dentists and psychologists who are included in the team, as opposed to more immunologists and CFS experts).

    Next Steps

    Gottesman said that for our specific concrete grievances, we need to write a letter stating those grievances and concerns and send that to the Director Collins's office. He promised us that it will be addressed and forwarded to the right person within the Director's office. (If patients are willing to send emails to Director Collins, we ask you to select something from the list of points Bob raised in his statement, found below. Pick the one or two points that you feel most affect or move you.)

    Most importantly, Gottesman said he will meet with us again. And I think 3 months time was suggested. We said we'd like others involved in that meeting, perhaps others from the NIH whom we might suggest, due to our specific needs.

    (Note: Any mistakes in this assessment of our meeting are all mine. There is a good chance there are many mistakes, as it was all taken in through exhaustion, brainfog and a poor memory.)

    Thanks to Robert Miller for organizing this meeting, to Dan Peterson for adding the weight of his years of experience and expertise. Thanks also to the amazing patients and family members who shared difficult stories of years lost to CFS, and to the NIH officials who took the time to meet with us and will hopefully meet with us again in the near future.
     
  15. eric_s

    eric_s Senior Member

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    Hehehe, yes. I'm in Spain at the moment (i might want to spend the winter here to avoid the cold in Switzerland). 3 days ago i had an accident :eek: But nobody was hurt and it was not even my fault.
     
  16. eric_s

    eric_s Senior Member

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    It's horrible, but you can't avoid the truth. They're totally digging their own grave, if todays news will be good. Bye, bye good reputation of BBC etc., at least as far as i'm concerned.
    Too slow, too stupid, and maybe not even honest (that's the worst)
     
  17. eric_s

    eric_s Senior Member

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    It's a scary thought... (now that was enough flooding on my part for 3 minutes)
     
  18. eric_s

    eric_s Senior Member

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    Oh, and if anyone feels the same and wants to come down here, just pm me, i can tell you all you need to know, how to best get here, where to live for a good price, hire a car, get around, how everything works...
     
  19. Roy S

    Roy S former DC ME/CFS lobbyist

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    I appreciate the effort made by those folks meeting with the NIH officials. However, there have been many, many meetings with NIH officials over the past 25+ years. I had them myself when I was the sole advocate/lobbyist/grassroots organizer in DC for a period nearly 20 years ago, working with a surprisingly small number of others in the US. It's strange to me that that's the time some people have written about as the good years. The progress seemed so paltry and slow then. There has to be a combination of efforts to effectively influence federal response. Kim McCleary's CAA has not been doing everything necessary.

    It's obvious that the NIH is doing what they always do. They will continue to cover up negligence and spin the past, present, and future of their bureaucracy in their favor. It will be-trust us; we know best; we do the right thing; we always have.

    In my opinion and meaning no offense to people who are making extraordinary efforts, if the CFS community never gets properly organized and doesn't get new and competent leadership we will largely be observers of events influencing what for many of us is the central issue of our lives. The big exception to that is raising money for the WPI.
     
  20. Bob

    Bob

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    Yes, this seems like it is quite something doesn't it!

    Yes, that's what I've been feeling about this... I don't think it can be underestimated just what a game-changer this is... I honestly believe that this is where it all starts for us...
    I suppose we still have to be cautious... we've had our hopes raised and dashed so many times before... But the growing evidence, and the people on board, make it look different this time.

    It does actually look like they are taking an interest in us now doesn't it?

    I agree Roy... we're not home and dry yet, but with Alter on board, and all of the mounting evidence, at least I think we can be hopeful right now... Hopeful but cautious?
     

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