Sunday, October 18, 2009

The CDC Failed CFS Sufferers in 1991 And Continues to do so Today.

In a landmark paper written by DeFreitas et. al, "Retroviral sequences related to human T-lymphotrophic virus type II in patients with chronic immune dysfunction syndrome", the authors stated that an association had been made by a yet unidentified retrovirus, and Chronic Fatigue Syndrome. It was during my tenure with the CDC in Atlanta that the CDC quickly jumped to the occasion and refuted the findings in the paper, pouring cold water on the retrovirus link. For the next 18 years, many theories surfaced about Chronic Fatigue Syndrome, with no answers - the phrases "hypothalmic dysregulation", "Neuropsychiatric disorder", "Neurally mediated hypotension" being all too common.

Meanwhile, a scandal was unfolding with our neighbors to the north where just two years ago the Canadian Government announced $150 million in compensation for those infected with HIV through blood products, and around the time the paper written by DeFreitas, details began to emerge about persons contacting Hepatitis C from tainted blood. A similar blood scandal like those of our Canadian neighbors was the last thing the CDC wanted - when the word "Retrovirus" was uttered, fear struck among the top brass of the CDC - notably Dr. Brian Mahy, prompting director William Roper to convene an emergency meeting with Louis Sullivan, then Secretary of US Department of Health and Human Services, and the director of the National Institutes of Health.

The result was simply scandalous.  Dr. William Reeves became installed as the head of the CFS/ME research program where under the command of his superiors namely Dr. Brian Mahy, many sinister things began to happen to the CFS/ME research program.  The experiment done by Dr. DeFreitas had essentially been rigged, and the CDC sent Dr. James Gow a standardized primer solution containing a fixed concentration of magnesium - so his lab would report a similar result.  During my tenure at the CDC during my research fellowship, we were told we would not be flying to Philadelphia because there was a lack of funds to buy airplane tickets.  It later turns out that $12.9 million dollars earmarked for CFS/ME research had been misappropriated and funneled to other projects, $8.8 Million was granted to pharmaceutical companies who sat on the money and did nothing with it, and $4.1 million dollars unaccounted for.  The Inspector General of the Department of Health and Human Services confirmed that $13 million in CFS/ME research money was either mismanaged and/or embezzled.  Following this report, the General Accounting Office noted research had declined on CFS at the NIH since 1996, there was a lack of communication between the CDC, and NIH about CFS research, and the leadership of the DHHS was ineffective in leading the CFS coordinating committee.

What ensued would have a profound effect on Chronic Fatigue Syndrome research for the next 15 years. Research funds for the disorder literally dried up overnight, and research came to a standstill. Shortly after the paper authored by Defreitas et. al. came out, the CDC was quick to refute their findings, and no further studies were made to isolate a virus. Basically, after the CDC has published their findings and used Dr. Gow to manipulate the results to appear as inconclusive, the NIH would no longer provide the research team of DeFreitas et. Al with further research funding on the matter or anyone else for that matter - it was case closed - NO RETROVIRUS! Now according to the CDC, CFS was a symptom of unknown etiology that had both psychiatric and neurological influences, and the NIH granted funding to find a neurological basis for the disease, which for the next decade would offer us some insights, but still no answers.

The fact is that we had our man 18 years ago, but we were too quick to rule him out as a suspect, and he's been out on the lam for the last 17 years. Rather than face the music, the CDC chose to stick their heads in the sand, and have it all come back in their at a later time. It begs the question of just how many people have been infected with XMRV through blood products , when we could have been testing our blood supply for at least the last 16 years? Lest not forget that antiviral drugs targetting XMRV would likely be available now had research been pursued.


  1. Dr. Luckett,

    Thank you so much for your blog; it is amazing! This is a really great post. The inside account of CDC shenanigans is invaluable!

    I, too am dismayed that we have been abused by CDC and NIH for 25 years; in particular, their dealing with the DeFreitas/ Cheney retrovirus has caused untold suffering and seriously harmed public health and the related science.

    WPI states on their facebook notes page that the DeFreitas/ Cheney rv (non-gamma) is not XMRV (gamma). This obviously means we need to pressure NIH to grant extramural funds to WPI and others to study the DeFreitas rv. In her patent application she indicated that the rv was found inside "large, abnormally distended mitochondria." Given other findings of mitochondrial dysfunction in ME/CFIDS this could very plausibly account for the profound exhaustion caused by ME.

    I would love to hear your thoughts on this.
    thank you.

  2. How does this offer hope to CFIDS sufferers?