Friday, February 11, 2011

CDC Research on CFS: Open Deception

This post contains evidence of 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, to reporters,and to 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 is 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 the 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. 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 -

You have to scroll down past Dr. Gerberding's long introduction to get to Dr. Reeves, and it's about ten paragraphs into his presentation to the reporters.

Just in case it looks like Reeves misspoke, there was also a written press release, also currently inaccessible (though 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.

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

2. In December 2005, BioMed Central published an article describing the 2-day Wichit hospital stay, in which it was stated that 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) "insufficient 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 these 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).

The origional article can be found here:

The information is mainly in the tables; if you are reading it online, 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 from the ISF group, plus 6 who would previously have been excluded for major melancholic depression for a total of 16 claimed to meet both the surveillance criteria and the new questionnaires -

Note: this is the only published trial performed by CDC to substantiate their claims that the questionnaires "operationalize" the Fukuda definition:

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 International Working Group's article on CDC's website - you have to pull up the article in BioMed Central:

"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 diseases 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 chronically 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 Johns Hopkins researchers)> The Reeves 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.


But we know that only 6 of the 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?

How many patients with CFS (Fukuda) participated in the two-day Wichita hospital stay?

6? 10? 16? 43? 58? 227?

Reeves (as representative of CDC) openly lied:

1. To the press corps (and probably the researchers in the genome study) when he said there were 227 patients with CFS in the two-day Wichita hospital study.

2. About the depression exclusion as defined by the Inernational Working Group on CFS - when he omitted the requirement that five years pass after the last incidence of depression and the beginning of current symptoms of fatigue.

3. About how many patients in the two-day hospital stay could be diagnosed with CFS - using the old or the new method - in an important refereed journal article used to "disprove" a theory about ANS dysfunction among CFS patients - when he said there were 58 patients with CFS who stayed in the hospital for two days;

4. And about having validated the questionnaires still used by CDC to diagnose CFS. Reeves has claimed that they "operationalize" the Fukuda definition. But his own published research show the questionnaires do not diagnose CFS (Fukuda) at all. He has quietly - and effectively - created a brand new definition, with far more in common with the Oxford definition used by British psychiatrists than the Fukuda definition he was supposed to use as director of the CFS program at CDC.

Ultimately, it is the questionnaires that perpetuate the biggest lie of all. If the CDC truly believes the Fukuda definition, amended by the Inernational Study Group, is the correct one, the questionnaires must be jettisoned now, and the Georgia data set re-examined, if not also discarded entirely.

All of us are owed a formal retraction and repudiation of the publications resulting from the two-day Wichita hospital stay.

The U.S. has allocated so little to the study of CFS, a disease that we know impacts a million Americans. How tragic that the money was wasted, apparently to promote an individual agenda.

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., Delaware, USA


  1. Thank You Mary. I'll Forward this......

  2. Mary, you've summarized the basis of the Reeves definition very well here. New, fresh faces are involved in advocacy and this deception will be brought to light.

  3. NOW is the time. The agreement by Unger to meet with patient orgs may be a way to approach this deception and get it put where it belongs, into the wastebasket.

    I doubt very much we will ever get an apology or retractions of these damning facts. If Unger wants to scrape the CDC website clean and begin anew, that would be nice...but nice they haven't ever been, and her name is on most of these false articles. I would rather ME/CFS be handed over to the NIH for ALL research from now on. The CDC can disseminate info about that research to the public, but they really can't be trusted to do it themselves.

    We shall see what the Unger/Patient meeting reveals. Pandora says it should be soon. Patients need to make sure Pandora and the Patient orgs know what you, I want FUNDING, FUNDING, FUNDING into appropriate testing of viral co-factors and XMRV for ALL patients, no matter their correct or erroneous diagnoses.

  4. Thanks, Mary, for pulling all this together.

  5. i'm surprised he got **ANY** ME patients to agree to a hospital stay. omf's setup is the only one which can produce any results. no one wants to spend any money on us tho so gathering data in patients homes is OUT.

    i figure what happened here is that this guy set up a bad study, didn't get any patients, and then had to find some way to interpret the data. i bet nih's new copycat initiative is equally as successful.

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