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CCFS Advisory Committee Meeting - Will be Webcast Live

Discussion in 'General ME/CFS News' started by Summer, Oct 20, 2009.

  1. Jimk

    Jimk

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    Cleveland, Ohio
    I have audio...

    I made audio recordings of all but a couple minutes (the beginning right after the break) of the whole webcast. Is there a way I can upload them to this board Cort? I've got them converted to Mp3 so they should be easily playable.
    If I zip them for attachment to a post they are about 32mb each. I don't want to suck up your bandwidth by attaching them without your permission.
     
  2. nina_online

    nina_online

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    Austin, TX
    I was disappointed and surprised to, but I wondered if she wants to speak tomorrow? Just wondering because Wanda did seem to indicate to a copule of people from the waitlist that you could decline to speak at that point but still be on the waiting list. I dont know if that scheduling flexibility only applies to those on the waiting list (who may get called at any time and not be ready).

    Thanks to everyone who testified, really great stuff. Also, thanks to Cort and others involved with this forum; without it I wouldn't have known about the meeting, and I wouldn't have known who any of these people are!

    Nina (apparently there are 2 Ninas, one in Germany and one in Austin -- me.)
     
  3. Kati

    Kati Patient in training

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    Anne, here is the testimony of a dr and this is who coined Reeve's disease. (love the name)
    http://www.youtube.com/watch?v=WUDyby8A7tI
     
  4. Koan

    Koan Be the change.

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    Actually, it was before that - just a flicker of pleasure. THEN, he seemed to surrender to the wave of appreciation and looked happy!

    I'm so grateful to him. I want to send him flowers! :p

    I'm so grateful to so many people today. It's a great feeling :D

    Let us see what tomorrow brings.

    peace out,
    k
     
  5. acer2000

    acer2000 Senior Member

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    There appears to be significant chunks of Dr. Peterson's presentation missing on the youtube version (ie part 2 is only 2 minutes). Anyone have a link to a more complete set?
     
  6. Aftermath

    Aftermath Guest

    Reeves Disease

    LOL at this. Perhaps Teitelbaum can be head of treatment with his S.H.I.N.E. theory.
     
  7. shrewsbury

    shrewsbury member

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    audio recordings

    thanks Jim - both for being there and for making the audio recordings!

    if:)
     
  8. acer2000

    acer2000 Senior Member

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    Jim,

    It would be awesome if you uploaded those mp3 files if possible. If you can't post them to this board, there are some web hosting services that could be used (some you have to pay for but some are free). Maybe thats an option?

    asus
     
  9. shrewsbury

    shrewsbury member

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    Agenda Oct 30 CFSAC

    a reminder, this is what's up tomorrow

    sweet dreams all. 9 am EST is 6 am PST


    Friday, October 30, 2009

    9:00 a.m.
    Call to Order

    Housekeeping


    Dr. James Oleske
    Chair, CFSAC
    University of Medicine &
    Dentistry of New Jersey

    Dr. Wanda Jones
    Designated Federal Official
    HHS Office on Womens Health

    9:15 a.m.
    Public Comment
    ...............(I believe Cort posted that Mike is up 1st)
    Public

    10:15 a.m.
    Committee Discussion

    Committee Members

    11:45 a.m.
    Special Emphasis Panel

    Cheryl Kitt
    National Institutes of Health

    12:15 p.m.
    Subcommittee Lunch
    Committee Members

    1:30 p.m.
    Discussion of Recommendations
    (Continued)
    Advisory Committee Members

    3:30 p.m.
    Comments from outgoing committee members
    Advisory Committee Members

    4:00 p.m.
    Adjourn

    http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac091029_agenda.html
     
  10. Jimk

    Jimk

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    Cleveland, Ohio
    I'll try part one audio

    Let's see if this attaches properly. It's a big file even zipped.Well, it was beyond the site limitations. I have them temporarily at Cpnhelp. I expect after the 2nd day of the meeting they will have a podcast available which will make these unnecessary.
    Sorry, I screwed up the url for the Part Two files. Hope they are working now.
    See how they work for you.
    www.cpnhelp.org/files/xmvrd1part1/section01.mp3.zip
    www.cpnhelp.org/files/xmvrd1part1/section02.mp3.zip
    www.cpnhelp.org/files/xmvrd1part1/section03.mp3.zip
    www.cpnhelp.org/files/xmvrd1part1/section04.mp3.zip

    Part Two- after the break-- missing a few minutes at the beginning.
    www.cpnhelp.org/files/xmvrd1part1/201.mp3.zip
    www.cpnhelp.org/files/xmvrd1part1/202.mp3.zip
    www.cpnhelp.org/files/xmvrd1part1/203.mp3.zip
     
  11. acer2000

    acer2000 Senior Member

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  12. citybug

    citybug Senior Member

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    NY
    Did the CDC rep have to stay through whole meeting, and both days? Were there any reporters there? Everyone was fantastic.
     
  13. Jerry S

    Jerry S Senior Member

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    Reeves Disease

    Aftermath:
    Yes, Aftermath, I think, that's a fantastic suggestion!

    I liked Kaspar Ezelius' name, Reeves Illness Melange, but Reeves Disease will do.
     
  14. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    Cdc, nih

    Even though today won't be as exciting please try and click at least once as the DHHS is really watching the hit count apparently. Dr. Jones seemed quite pleased that we hit 400 about halfway through the program.

    CDC rep should be there today. Kim McCleary was pissed that the CDC did not provide copies of the final plan either to the people in the room (or apparently to the panel) - they simply quietly posted it on their site.
     
  15. Dolphin

    Dolphin Senior Member

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    Wow Jimk, that's brilliant.

    Unfortunately only the first four are working for me. Could there be an error in the URLs for the last three?
     
  16. sosumi

    sosumi

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    The meeting will be archived and viewable at the NIH site.
    http://videocast.nih.gov/PastEvents.asp

    It looks like they are quick to post the archives. Please, rather than watching from youtube or listening to these mp3 files, view the official videos from the NIH site, so your views will be officially counted. A small group of people worked very hard over a number of years to have these meetings taped, live streamed and archived for us.

    The live streaming and the archive are very important and the NIH needs to see how many people are interested in it, so please view the official archive.


    The history of the live streaming so you can appreciate all the hard work that went into having this available:

     
  17. shrewsbury

    shrewsbury member

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    thanks for the info sosumi

    here's the link to start watching today - it started on time 3 minutes ago

    http://videocast.nih.gov/
    (I think 4th or 5th one down)

    if:)
     
  18. Mark

    Mark Acting CEO

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    Here are some extracts from a personal statement I've forwarded to some friends in the UK, encouraging them to tune into the podcast...

    Now is a time of great hope, and also of great fear...

    I am writing to recommend you - in your own interest - to take as many minutes of your time as you can to read the important information below, if possible to watch some of the video footage, and to recommend your friends and family to do the same.

    It's unfolding live right now! Day 2 starts today Fri Oct 30 at 1:15PM UK Time and continues until about 9:30PM UK Time, via RealPlayer, details here, don't miss it: the podcast won't be available in the archive for some time after today:
    http://forums.aboutmecfs.org/showthread.php?t=761

    Highlights from Day 1:
    Search Google Videos for "CFSAC Meeting youtube":
    http://tinyurl.com/yzdt7dj

    The presentations are compelling, frightening, exciting all at the same time. We may instinctively wish to turn away from them and await further confirmation. But we cannot afford to act slowly in response to this news - the implications are too serious to ignore.

    XMRV is a gammaretrovirus which infects the immune system, and the indications are that it has been spreading rapidly as an infectious disease for at least 20 years and now infects 3-4% of the US population. It is strongly believed to play a key role in a significant proportion of cases of a wide range of serious medical conditions, including neurological conditions and ideopathic diseases of the immune system.

    There is now very little room left for doubt: these latest findings regarding XMRV imply a major health epidemic on the scale of AIDS or worse (far more people are affected). This new retrovirus has also been found in the same levels in the international samples, so it is...

    !!! HIGHLY LIKELY that up to 1 IN 25 UK CITIZENS ARE NOW INFECTED WITH THE XMRV RETROVIRUS !!!

    !!! THREE LABS HAVE NOW CONFIRMED THE US TEST RESULTS !!!

    !!! THE RESEARCHERS HAVE URGED PATIENTS WITH IDEOPATHIC (UNKNOWN) CHRONIC ILLNESSES FEATURING PERSISTENT FATIGUE NOT TO GIVE BLOOD !!!

    !!! As well as a 98% link with cases of both CHRONIC FATIGUE SYNDROME (CFS), M.E. and FIBROMYALGIA (FM), many other conditions are believed to be associated with XMRV INFECTION. Early studies have found elevated levels of XMRV in cases of PROSTATE CANCER and other CANCERS, LEUKAEMIAS AND LYMPHOMAS, as well as 40% of people with AUTISM in one small study, and there is evidence of connection with IMMUNE DYSFUNCTIONS, atypical MULTIPLE SCLEROSES, CHILDHOOD ALZHEIMER'S, IRRITABLE BOWEL SYNDROME (IBS), POST-TRAUMATIC STRESS DISORDER, some misdiagnoses of RHEUMATIC CONDITIONS and even some US cases diagnosed as MUNCHAUSEN'S BY PROXY !!!

    !!! MAJOR LAWSUITS ARE ALREADY UNDER WAY REGARDING CASES WHERE TRANSMISSION VIA BLOOD TRANSFUSION HAS BEEN DEMONSTRATED !!!

    "All of you with CFS have the attention of the world today.....XMRV is the piece of the puzzle that can't be ignored. Today ends the debate....CFS IS NOT and NEVER WAS a psychiatric illness."
    (Annette Whittemore (funder and founder of the Whittemore-Peterson Institute (W-P I))

    3 different laboratories have confirmed the results, including the US National Cancer Institute. The retrovirus was found, in multiple sub-test expressions, in 2/3 of the test cohort of (US and international) patients with CFS and ME, and in further results 99 out of 101 of the test cohort test positive on at least one of the sub-tests. These detailed results were confirmed by the other 2 research centres. By comparison, just 3-4% of the control population tested positive.

    Please watch as much as you can - and encourage friends and family to watch as much as they can of the testimonies, and the scientific presentations, and all the other youtube highlights from the first day of the CFSAC meeting (CFSAC is the US government advisory group dealing with CFS and thus, now, with the discovery of the XMRV virus). The meeting couldn't be easier to view: try the following google/youtube searches for "CFSAC" - Dr Petersen's presentation begins in the clip "Part 1" after just over 1 minute of preamble from the committee chair. The scientific presentation is less than half an hour, and takes a few minutes to get going, but it does reveal the state of the art scientific information on XMRV and I'd encourage you to stick with it and absorb as much as you can, it's really important.

    Search Google Videos for "CFSAC Meeting youtube":
    http://tinyurl.com/yzdt7dj

    For human statements, many of them heartfelt and emotional from those who have suffered alone for 2 decades or longer, I commend the 5-minute testimonies. Ms Whittemore's presentation is also very important.

    If you're in the UK, please fax your mp (use www.writetothem.com) about XMRV and CFS and ASK WHAT THE UK IS DOING ABOUT IT - if you like, give him a piece of your mind while you're at it...some suggestions follow further down the page.


    Key Quotes from the historic CFSAC Advisory committe, Day 1:

    "All of you with CFS have the attention of the world today.....XMRV is the piece of the puzzle that can't be ignored. Today ends the debate....CFS IS NOT and NEVER WAS a psychiatric illness."
    (Annette Whittemore (funder and founder of the Whittemore-Peterson Institute (W-P I))

    The US Centre for Disease Control (CDC) was accused of crimes against humanity in the culmination of one presentation from a member of the public, resulting in a wide round of applause.


    The prevailing feeling from the government health agency representatives was perhaps best summed up by this quote from the CDC Rep:


    "Responding to his response, I can't respond"

    Government bodies including CDC, NIH and others gave brief presentations indicating that they would not be able to make any real comment on anything today and, overall, had nothing much to say about it. Some of them had to be off sharpish to go screen some blood. The highly controversial Dr Reeves, who had been due to give a key presentation on the finalised CDC 5-year plan for CFS, was unable to be present. He is believed to be on the way out, and may indeed have already left the building.


    Continuation of the long controversy over Reeves' chosen selection criteria (the CDC, to widepsread comndemnation, have twice changed and extended the definition of CFS in a highly misleading way that tends to include various depressive illnesses and exclude many of the wide range of CFS/XAND sufferers) led to some savage attacks on Dr Reeves, the man responsible at the CDC for defining these tests, culminating in the best joke of the day when one public presentation suggested naming the condition suffered by the 'rump' of people who test XAND negative but fall into Dr Reeves' definition of CFS: "Reeves Disease".

    By common consent, thus is it now defined.


    [ED'S NOTE:


    In the UK, we may perhaps come to define an equivalent: "Wessley's Disease". We might define "Wessley's Disease by Proxy" as a psychological disorder prevalent in the UK amongst psychotherapeutic research scientists, practitioners, and others, in which fear of physical disease and of the unknown prompts them to compulsively present fictitious psychiatric illnesses as purported explanations of the medical symptoms of their patients. XAND patients treated by physicians suffering from "Wessley's By Proxy" may come to be studied as a separate and acute form of XAND, one in which the patient's symptoms have been worsened and prolonged by the enthusiastic propagation of ignorant and damaging societal myths and therapeutic recommendations. Affected practitioners may need to be referred for psychiatric and other corrective therapies.]



    If you're in the UK, please fax your mp about XMRV and ASK WHAT THE UK IS DOING ABOUT IT - if you like, give him a piece of your mind while you're at it...some suggestions follow below:

    http://www.writetothem.com/

    Personally, I think it might be a good idea to suggest we start preliminary testing of the blood supply right away using the preliminary tests of the W-PI Istitute, so you could mention that. You could also call for a criminal investigation and parliamentary inquiry into the long-standing allegations of a cover-up by certain key influential individuals who have consistently and strongly denied the existence of any physical illness, and ask what is being done right now to help, support, and advise existing diagnosed and undiagnosed CFS-spectrum sufferers.

    Here's a good one: You could ask for figures of how many of us there are in the UK, which would highlight the fact that they don't collect proper statistics because none of us are registered because they do not accept that the condition exists.

    We now know that we have a retroviral illness, yet we can still only obtain a psychiatric diagnosis in the UK. Even in the US this is now considered to be a backward practice, and most states recognise CFS to be a physical illness with physical diagnostic tests (tests which are still unavailable in the UK). We need to establish a new NATIONAL MEDICAL CENTRE to both study and treat XAND-related conditions and similar syndromatic conditions. We need recognition for sufferers , access to already-well-established tests and treatments, better training of GPs, and ultimately, apologies and reconciliation from a society that many, many of us feel has let us down.

    We need to ACT NOW BEFORE MORE LIVES ARE NEEDLESSLY RUINED by this epidemic. We need to question our governments and our health authorities and demand that they now act fast to make up for the failings of the past 20 years.

    The time for caution is over. You can't ignore us any longer. Now is a time for great fear, and also for great hope.

    Thanks so much for reading,

    Mr X



    On a lighter note, you would have to be extremely naive and trusting to automatically believe everything you hear or see in the following presentations. It is far more likely that the official line is true and correct: It was mice. Probably...


    http://www.youtube.com/watch?v=lU12h6lWi9I&feature=related
    http://www.youtube.com/watch?v=CDxZ7PX8YGI&NR=1
    http://www.youtube.com/watch?v=w8FX-B9vcgg&NR=1

    xxx Mr X
     
  19. Mark

    Mark Acting CEO

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    Oops, sorry, seem to have posted the whole thing, not just abstracts. Sorry about that!
     
  20. garcia

    garcia Aristocrat Extraordinaire

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    I'm watching it right now Daisy. I started watching at 9:15 or so.
     

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