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CDC Research on CFS: Open Deception

Discussion in 'Latest ME/CFS Research' started by xanadu, Feb 9, 2010.

  1. xanadu

    xanadu

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    CDC Research on CFS: Open Deception
    Posted by Mary Schweitzer on February 7, 2010 at 7:00pm
    http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1002b&L=co-cure&T=0&F=&S=&P=823

    What this post contains is deliberate deception by the CDC - in refereed journal articles and when speaking to the press.

    I'm tired of sending this information to the CFSAC, to politicians, reporters, and scientists. Nothing ever happens. Maybe one of you reading this can find a way to do something about it.

    Bill Reeves' name is on all of it - but he's not the only one, and I ask every co-author, every collaborator, to disavow this research, and the resulting questionnaires.

    In the following documents, CDC describes a two-day hospital stay in Wichita. According to the CDC, there was only one such two-day hospital stay having to do with CFS. We are told there were 227 patients with CFS, 58 patients with CFS, 43 patients with CFS, and 6 patients with CFS - same hospital stay, same group of patients. What happened here?

    We are owed a public apology and a retraction, and we should not rest until we get one. This is important NOT because it was Reeves, but because CDC still uses a set of diagnostic questionnaires that Reeves claimed "operationalize the Fukuda definition" - but the only formal effort to verify that claim was in this two-day Wichita hospital stay.

    This MUST be aired publicly, because it is just plain WRONG, yet there remains an article claiming to disprove NMH's relationship to CFS, the questionnaires continue to be used by CDC to diagnose CFS - AND co-authors continue to be decision-makers regarding our disease.

    Here goes:

    1. In April 2006 there was a conference call and press release about the genome study, where Reeves stated 227 patients with CFS from a population study brought into a hospital for two days were included in the data set - and also stated there was only ONE such study, so it's the same as in items 2, 3, and 4.

    CDC's official website has this link:

    http://www.cdc.gov/od/oc/media/transcripts/t060420.htm

    Couldn't find the website using the URL given by CDC? Neither could I. I believe CDC has deleted it, which is a violation of Sunshine laws, but there's always the Internet Wayback Machine :

    http://web.archive.org/web/20060512010531/http://www.cdc.gov/od/oc/media/transcripts/t060420.htm

    You have to scroll down to about the tenth paragraph of Reeves' presentation to the reporters to find the assertion that 227 patients with CFS were put in the hospital for a two-day study.

    Just in case it looks like Reeves misspoke, there was also a written press release, also currently inaccessible (tho it LOOKS like there's a link) - but again, that's why we love caches and Google - in this one he says 227 patients with CFS in the second paragraph:

    http://www.cdc.gov/media/pressrel/r060420.htm

    Why was this open deception okay? Where's the apology?

    2. In Dec 2005, BioMed Central published an article describing the 2-day Wichita hospital stay, in which it was stated that of 227 PEOPLE from the Wichita surveillance study were brought into the hospital for a two-day stay; 58 who had been diagnosed with CFS during the study, and 169 PEOPLE from 3 other categories: (1) "Insufficent Symptoms of Fatigue" (ISF) to be classified using the Fukuda definition; (2) CFS and ISF with major melancholic depression, which was exclusionary; and (3) a set of matched controls.

    So of the 227 PEOPLE who were brought into the hospital, only 58 had been diagnosed with CFS. And of those 58, only 6 remained after various exclusionary criteria were applied.

    To repeat, only SIX of those remaining in the study had been diagnosed with CFS using the methods of the surveillance study (telephone interview with physician follow-up, using the Fukuda criteria)

    http://www.cdc.gov/cfs/publications/casedef_10.htm

    Origional article:

    http://www.biomedcentral.com/1741-7015/3/19

    The information is mainly in the tables; if you are reading it on internet, click on table 2 and table 5.

    3. The same article found 43 patients currently afflicted with CFS using the new questionnaires - including only those 6 patients who had been previously diagnosed with CFS during the surveillance study, plus another 4 who were newly diagnosed, plus 6 who would previously been excluded for major melancholic depression for a total of 16 claimed to meet both the surveillance criteria and the new questionaires - Note: this is the ONLY published trial performed by CDC to substantiate their claims that the questionnaires "operationalize" the Fukuda definition:

    http://www.cdc.gov/cfs/publications/casedef_10.htm

    4. The depression exclusion was changed after a meeting of the so-called "CFS International Working Group" - BUT - the NEW criteria only said you could add in patients with major melancholic depression IF AND ONLY IF the bout of depression had resolved and not returned for at least five years before the onset of fatigue.

    You will not find the 5-year requirement in the abstract of the article on CDC's website - you have to pull up the article in BioMed Central:

    http://www.biomedcentral.com/1472-6963/3/25

    "The 1994 case definition stated that any past or current diagnosis of major depressive disorder with psychotic or melancholic features, anorexia nervosa, or bulimia permanently excluded a subject from the classification of CFS. Because these illnesses may resolve with little or no likelihood of recurrence and only active disease or disease requiring prophylactic medication would contribute to confusion with evaluation of CFS symptoms, we now recommend that IF THESE CONDITIONS HAVE BEEN RESOLVED FOR MORE THAN 5 YEARS BEFORE THE ONSET OF THE CURRENT FATIGUING ILLNESS [my emphasis], they should not be considered exclusionary."

    And, finally,

    5. The two-day hospital stay data was used in an article claiming to have disproved any connection between NMH and CFS (as described in a 1995 JAMA article by Hopkins researchers) - the article states that 58 patients with CFS were brought into the hospital for a two-day stay and were given tilt table tests, and did not have NMH/POTS. See

    http://www.cdc.gov/cfs/publications/causes_30

    But we know that only 6 of those 58 supposedly still had CFS by the time they entered the hospital for that two-day study. Even if they had turned to the questionnaires to put together the sample, it was only 43. So where were the supposed 58 patients with CFS in a two-day hospital stay??

    ----------------------

    All of us are owed a formal retraction and repudiation of the publications resulting from the two-day Wichita hospital stay - and admission that those questionnaires CDC insists "operationalize" the Fukuda definition do nothing of the sort. They were NEVER validated. They need to be jettisoned.

    I tried for four years to do something about this, and I failed.

    I am now handing it to the community - and the co-authors, who share responsibility even if they worked on a different task in the study - to get something done. Public apology and public retraction - nothing less.

    Mary M. Schweitzer, Ph.D.
  2. Dolphin

    Dolphin Senior Member

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  3. Carrigon

    Carrigon Senior Member

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    PA, USA
    There is no doubt there's a high level coverup going on. I would like access to all the sealed government documents regarding CFIDS and ME cluster outbreaks in both the US and the UK. I also think they should be held accountable for releasing weaponized Lyme and weaponized micoplasma.
  4. muffin

    muffin Senior Member

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    USA!
    Could NOT agree more that there is a very high level cover-up of CFIDS/ME

    But the US and UK orgs will never let go of those documents. The UK locked down a document in the Archives for 80 plus years. What does THAT tell you? Waiting for all involved to die before it can be opened. Something so very wrong with that picture. The problem is that we don't even KNOW what the US/UK governments have locked up on CFIDS/Me so we can't even ask for it via FOIA requests.

    Would I think it outrageous that XMRV and/or other pathogens were created by the governments for use in war or even medicine and then messed it all up? Nope, I believe they do have something to do with this disease otherwise they would not be fighting us tooth and nail for over 30 years - would they? There is so much proof out there that CFIDS/ME is a real disease and yet our governments refuse to admit it. Better to call us crazy and continue to damage and demean us to keep us down and our mouths shut. BUT, what they did not count on was the WPI and the power they had to launch a massive patient revolt against the US/UK governments and what they have done to us sick for 30 years. Once a revolution starts, it's almost impossible to kill it off - and this is going to be so very true about CFIDS/ME from now on. So, CDC, other US health orgs, UK and the Wessely morons, - you are on notice that we are not going to stop fighting you. You thought we would die off and be done with it, but we are growing in numbers instead and that is a very serious problem - for YOU and US.

    WE ARE WATCHING ALL HEALTH ORGS AND INSURANCE COMPANIES - THIS WAR IS GOING TO GET UGLIER AND UGLIER UNTIL WE FIND A CAUSE AND CURE. WHAT ROLES HAVE THE US/UK GOVERNMENTS PLAYED IN OUR DISEASE????

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