1. Patients launch $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!
Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
Discuss the article on the Forums.

FLASH: CDC/NIH using Wichita, Georgia samples

Discussion in 'XMRV Research and Replication Studies' started by hvs, Oct 29, 2009.

  1. Jessrose21

    Jessrose21

    Messages:
    68
    Likes:
    0
    Farmington, NY
    Which one is the CDC guy?
     
  2. markmc2000

    markmc2000 Guest

    complaints, feedback

    Maybe another idea would be too contact Kathern Sebilius, the new HHS appointee of barack obama. Maybe even call barack and the white house. Probably be best just to go over wandas head?

    Mark
     
  3. Summer

    Summer Senior Member

    Messages:
    175
    Likes:
    0
    On WPI facebook page, a person posted:

    "I am here in Washington DC attending the CFS Advisory CoMmittee. Room is packed with patients, researchers and other stakeholders. Drs. Dan Peterson, David Bell, Kenneth Friedman, Fred Friedberg, & Annette and Harvey Whittemore are here. Advocates brought in green t-shirts with Fund XMRV in CFS in the front and in the back Fund WPI.Signs supporting the NEI Center are being signed up. I will take pictures later."
     
  4. Jessrose21

    Jessrose21

    Messages:
    68
    Likes:
    0
    Farmington, NY
    Huh. Coffin just said that there ARE antiretrovirals that do work against XMRV. So don't worry just yet. :)
     
  5. Robin

    Robin Guest

    yeah I saw that! Hurray! and confusion?
     
  6. anne

    anne Guest

    Dr. Peterson just called out the CDC.
     
  7. kamina

    kamina Retired account

    Messages:
    27
    Likes:
    0
    No offense but I think you are blowing things way out of proportion, not to mention being a bit presumptive (to say the least) about Ms.Jones' intentions. She was simply following the rules which say the public who signed up to speak should be allowed to do so. In actuality, she was doing the opposite of what you are accusing her of - she was trying to be fair to the public who took the time and energy to come to the meeting to be allowed time to speak.

    That said, I would have, as (the man whose name escapes me at the moment), allowed her to speak at that moment (and they did, and Ms.Jones did not seem have a problem with it).
     
  8. Jerry S

    Jerry S Senior Member

    Messages:
    422
    Likes:
    13
    Chicago
    All I can say right now is wow. It was good to hear truth to power. It was the most exciting meeting I've ever seen.

    Jerry
     
  9. Summer

    Summer Senior Member

    Messages:
    175
    Likes:
    0
    I think phone calls and emails must have been made, she came back with a much different tone in her wrap up. She was downright hostile in her tone, even if just keeping the rules, her tone could leave a different impression.
     
  10. Finch

    Finch Down With the Sickness

    Messages:
    326
    Likes:
    7
    Hi All!

    Thanks for the updates. I can't watch at work, but I can check in here now and then to do a quick read. I really appreciate it!
     
  11. Forebearance

    Forebearance Senior Member

    Messages:
    395
    Likes:
    115
    Great Plains, US
    CFSAC meeting

    Yeah, I think Wanda Jones didn't intend to be hostile. I think she's just a bureaucrat. To her this is just another meeting. She's not emotionally invested in it like we all are. I'm really glad they figured out a way to "allow" Annette Whittemore to speak within their procedural framework. That was important! I mean, duh! lol
     
  12. Robin

    Robin Guest

    Yeah, that was hilarious.

    I gave blood frequently before getting ill. The Red Cross volunteers called all the time, and after I got sick they kept calling. Finally I described what was wrong with me to the volunteer in detail and explained that I wasn't sure if I could give it to other people. They never called again!
     
  13. Andrew

    Andrew Senior Member

    Messages:
    1,977
    Likes:
    1,267
    Los Angeles, USA
    I am only able to read part of this thread. But we all know that too often politics trumps humanity. I hope Annette Whittemore has is consulting with a public relations firm, because this battle will not be confined to what is reasonable and humane.
     
  14. Stuart

    Stuart Senior Member

    Messages:
    139
    Likes:
    24
    Actually I find this quite funny, if we have an "unwellness" that is simply because of an irrational belief system, then we should have no issue giving blood!

    If they use the patient sample from Georgia which catches idiopathic fatigue based upon the Reeves "empirical definition," they are likely to "prove" we are safe to donate blood. They can't have it both ways!

    If you knowingly have HIV and give blood it is a crime, if they don't confirm XMRV in CFS, what will they do?

    If the NIH/CDC doesn't verify the result I would love a public "protest" of bringing their findings to a blood bank and saying I am donating blood regularly unless someone thinks I need to be tested for XMRV, but the NIH/CDC doesn't think I do. I need the money to pay for my CBT/GET.

    Get a group of us, call the media!;)
     
  15. caledonia

    caledonia

    Messages:
    3,039
    Likes:
    1,711
    Cincinnati, OH, USA
    If the issue with carving out 5 minutes for Annette Whittemore was taking away time from someone else already on the agenda - well, they wasted at least 5 minutes arguing over whether they could let her talk or not. I was like, just let her talk already.

    I could see Wanda's point of view with sticking to the meeting rules. If you don't have some kind of rules at a meeting, it will quickly descend into chaos. I've been at meetings like that, and it's not pretty.

    But anyway, I'm glad that AW did get a chance to speak.
     
  16. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    It was a little tense but Wanda Jones follows the rules meticulously when it works for us and when it doesn't. She's actually been VERY good to us; the videocast was entirely due to her. She's gotten the committee to be much better organized. If you give them testimony - even if you don't speak - its on the website.

    They moved us into a much bigger room - with three camera men - it was very different.

    Somehow we have a friend somewhere because she's really a cut above the others in what she can make happen. (Just don't break the rules!):eek:
     
  17. hvs

    hvs Senior Member

    Messages:
    292
    Likes:
    0
    I think that the CAA f'ed the pooch badly in the first few weeks of the XMRV era, but if they get out in front of things and prepare the media for the fact that the NIH is using the Wichita and Georgia cohorts for their replication study (and, they claim, some WPI samples--though it was news to Annette Whittemore) they can redeem themselves.

    Any guesses as to the rate of xmrv active infection they'll find in their dubious replication attempt?
     
  18. Dolphin

    Dolphin Senior Member

    Messages:
    6,870
    Likes:
    6,159
    Well what do we think the rate is in "proper" CFS - 67%, 90%, 98%?

    A little background: the CDC exclude a lot of people with proper CFS or ME/CFS from their cohorts:


    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC419502/pdf/1471-2377-4-6.pdf

    My guess is most researchers don't exclude hypertension (high blood pressure) unless it by itself could affect the specific readings in a particular study. But sometimes these things can be controlled for (e.g. being overweight can affect some readings but people are not generally excluded for being overweight unless they are very obese).

    I think most biological researchers would have a problem excluding for "abnormal Romberg test" - some people think that is a good way to check for ME!

    (There may be other things that are not good exclusions)

    It might be because of these exclusions that the CDC found a prevalence of 0.235% but Leonard Jason found a prevalence of 0.422%.

    So comparing the two CDC studies, the prevalence with the empirical criteria was 10.8 times higher (2.54% vs 0.235%). There was a slight shift in methodology (they invited in some unwell people who didn't fit the criteria on the phone but some did when they filled in the detailed questionnaires - CDC said this increased the prevalence by 11.5%. But it is questionnable whether these extra patients would have satisfied the "proper" Fukuda definition.

    So perhaps only 10% of the Georgia cohort would satisfy the Fukuda definition. And the Fukuda definition is far from perfect!
    So I could well see being less than 10% for that group ("plus" then the rate of XMRV in the general population for the rest of the population)

    The CDC say 16 out of the 43 CFS empirical group satisfied the Fukuda definition (as normally applied). But 6 of these were previously excluded because they once had Major Depressive Disorder with Melancholic features (MDDm).
    So I think it is better to say that 10 out of the 43 in the Wichita cohort have CFS (Fukuda) or 23.2%.
     
  19. anne

    anne Guest

    So, maybe that holds true for their Georgia cohort. Subtract those with an immune or mitochondrial disease that's not XAND and...

    Hmm, I'll guess the NIH "replication" study will find xmrv in 15% of "CFS" patients.
     
  20. Dolphin

    Dolphin Senior Member

    Messages:
    6,870
    Likes:
    6,159
    No, there is no reason to believe the proportions would be the same in both.

    The Wichita two day cohort was an unusual group: around a quarter of those invited in had previously been diagnosed with CFS. But only 6 out of the 58 who had previously been diagnosed with CFS (in 1997/8/9/2000) were found to have CFS in 2003. That's when the CDC changed its criteria.

    The Georgia cohort is a study on a proper random sample of the population.
     

See more popular forum discussions.

Share This Page