Sunday, February 7, 2010

CDC Research on CFS: Open Deception

I've just posted an essay detailing published lies and misrepresentations to the press by Bill Reeves:

http://cfsknowledgecenter.ning.com/profiles/blogs/cdc-research-on-cfs-open

I have asked that it be posted on Co-Cure, but one never knows.

I have testified about this to the CFSAC, I have sent the information to reporters, to my congressional representation, and to researchers, and nothing changes.

One senator's aide replied with a form letter about the CDC's work and a copy of the deceptive BioMed Central article!!

I'm hoping that in this climate, SOMEBODY will DO something about it

But ... Both Elizabeth Unger and Suzanne Vernon were co-authors.

Mary

UPDATE:

I've just learned that the policy on the ME-CFS Community blogaite has changed, and you have to join to read anything on there. I can't put it on my own website because I don't have my laptop with me.So here is the text and the info - perhaps someone could wrestle it down to a usable size for writing to representatives or newspapers.
TC, Mary
---------------------------
CDC Research on CFS: Open Deception• Posted by Mary Schweitzer on February 7, 2010 at 7:00pm
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.
Sent from my Verizon Wireless BlackBerry




No comments: