Fly Away to XAND-ado, or Where Is Elaine DeFreitas?

The discovery of antibodies to the retrovirus XMRV in the blood of 95 percent of ME/CFS patients has led to an air of celebration best expressed by these 20+ year ME/CFS patients who partied with funny hats that read "I heart retrovirii." It has also led to a new name for the illness: XAND or X-associated neuroimmune disease. But two questions are on everyone's minds: how do we keep the momentum going when the patient community is so frail, and where is Elaine DeFreitas?

First, let me talk about XAND and why it's so exciting.

Retroviruses are rare in the general population, whereas most other viruses found in ME/CFS patients are ubiquitous. Most viruses discovered in ME/CFS patients have been common or fairly common herpesviruses such as CMV, Epstein Barr, HHV-6. A finding of a retrovirus in 95 percent of a patient group argues very strongly for causality.

This is why our ME/CFS luminaries -- including the doctors who have put their careers on the line for ME/CFS patients -- are making strong statements about XMRV being a cause of ME/CFS. Dr. Paul Cheney, who treated patients in the Incline Village cluster outbreak of ME/CFS, wrote, "The finding of antibody or active virus in 95% of CFS and 4% of controls is a result that argues for causality, in my opinion, especially with the associated RNAse-L corruption and NK functional impairment that might predict such an infection."

Dr. David Bell, who treated a cluster outbreak of ME/CFS in Lyndonville, NY stated in his newsletter,"Now I am not going to be too optimistic -- I think XMRV is going to turn out to be the 'cause' of ME/CFS, and I think treatments will be available from every family physician in America who accepts Medicare. The question is whether this occurs next year or twenty years from now."

I would argue that the best determinant of whether treatments are available in one year or twenty has a lot to do with whether we remain soft-spoken or ACT-UP, whether we deny history or make sure it never gets repeated, and whether we stop feeding the hands that bite us.

So how do we keep the momentum going?

First, the problem. Judy Mikovitz, who spearheaded the XMRV research at the Whittemore-Peterson Institute, said ME/CFS patients are too debilitated to even easily infect other people. Addressing why XMRV hasn't spread like AIDS, Mikovitz said in Science News, "It's probably not spreading very fast, because people with chronic fatigue 'are too sick to do anything.'"

Too sick to spread our own epidemic! It's almost t-shirt worthy.

In the Centers for Disease Control since the findings, there are already rumbles of a counterattack. ME/CFS program head William Reeves has made ominous statements to the press about validating the XMRV research. In the New York Times, he said, “If I don’t know the nature of the cases and controls, I can’t interpret the findings." Then he added, “If we validate it, great. My expectation is that we will not.” The Times went on to report that Reeves, "noted that there had been false starts before, including a study in the 1990s linking the syndrome to another retrovirus, which could not be confirmed by later research." One has to ask if these statements are a bizarre level of prescience, a threat, or just a total lack of scientific objectivity.

The main "false start" was of course the research of Elaine DeFreitas, who published evidence of a retrovirus in ME/CFS patients in 1991, and then mysteriously -- after the CDC failed to replicate her findings -- disappeared into her own haze of illness.

So where is Elaine DeFreitas?

This question is important because, as activists, we have to understand what happened to DeFreitas to keep history from being repeated and studies from not being repeated.

A 1996 Newsweek review of Osler's Web reads almost like a prediction about DeFreitas' legacy: ". . .when the CDC publishes a paper saying it has been unable to replicate her findings, her support evaporates. By early 1995, the saga has cost [Dr. Paul] Cheney and [Dr. David] Bell their marriages, and a regretful de Freitas fears her career as a scientist is finished. The book closes with the image of an infectious disease spreading unchecked as an arrogant medical establishment looks the other way."

It is important to note that DeFreitas thought she found in ME/CFS was an unknown human retrovirus. The only known human retroviruses at the time were HIV and HTLV-1/HTLV-2.

As Hilary Johnson reported in Osler's Web:

"DeFreitas spoke next. . . . 'Clearly this virus is not HTLV-two. We now have additional data that verifies that point.'. . .Then DeFreitas moved on to the most interesting aspect of her work: the virus's appearance. 'We've look at four of these five cell lines. We can see particles by electron microscope, but not extracellular virus,' she said. 'We are not looking for a C-type retrovirus.' The significance of DeFreitas's comment most likely was appreciated by most present: every known human retrovirus was a C-type."

The ME/CFS forums are buzzing with people who claim to have "insider information" that Judy Mikovitz thinks DeFreitas actually discovered XMRV in ME/CFS back in the early '90s. Since I got sick in 1992, this means my illness could have been cured before I lost my whole life.

So why wasn't the illness cured then? Hillary Johnson wrote that her impressions of the CDC was that it was full of ignorant frat boys unable to launch an organized conspiracy, but I don't think we should underestimate the power of a group that invented hazing. A 1994 piece for the New York Native by Neenyah Ostrom about the CDC's antics was appropriately titled, "Retrovirusgate." In Ostrom's article, the picture starts to look frighteningly like. . . the present:

"The Kyoto meeting and the San Francisco press conference resulted in major press coverage for CFS in early September 1990, including stories in the New York Times, USA Today, Newsweek, Philadelphia Inquirer, Boston Globe, Toronto Star, Montreal Gazette, San Francisco Chronicle, and the Charlotte Observer, among others. In April 1991, a formal report of the retroviral findings was published by DeFreitas, Cheney, Bell, and eight colleagues in the Proceedings of the National Academy of Sciences USA. . . .(8) And here the "CFS retrovirus" story appears to have come to a complete halt. None of the questions raised by DeFreitas and colleagues- or anyone else-about the virus has been answered to date. What happened?"

While a lot of patients seem to believe now the CDC will be excited about the XMRV findings and the extensive media coverage, I think a funny hat is the last thing on Reeves' mind. Right now he is probably thinking about damage control.

Getting rid of DeFreitas in the early 90's, in fact, didn't take much hazing at all, but it did take a script that reads like a frat boy's excuse to show up late for his second semester classes. In fact, as Dr. Paul Cheney recounted on his blog, what it took to stop DeFreitas was about equal to the cost of two unpurchased plane tickets.

Here's how Dr. Cheney told the story: after studying many ME/CFS patients in the 1980s, he had noticed unusual immune disturbances and contacted Elaine DeFreitas at the Wistar Institute, and she subsequently found retrovirus genes associated with ME/CFS. Her work was attacked by the CDC who failed to replicate her findings. DeFreitas felt they had manipulated the magnesium concentration and changed the primer stringency of her original study, thus skewing their results, and she suggested flying CDC scientists to Philadelphia to run assays alongside her in her lab so that they could make sure the procedure was done accurately. As Dr. Cheney's reported, the CDC rejected the offer due to “lack of funds to buy plane tickets” for a trip from Atlanta to Philly.

What happened to DeFreitas after the publication of her work almost reads like a parable of ME/CFS activism. DeFreitas, like most ME/CFS patients, not only got discouraged but became too sick to go on. Now, nobody seems to know where she is. In 1994, according to Osler's Web DeFreitas was dealing with a painful condition called reflex sympathetic dystrophy (RSD), but the ME/CFS community began to whisper that she might actually have contracted ME/CFS from working with patients' blood. Dr. Cheney's partner Charles Lapp examined her and ruled out ME/CFS, but Dr. Davin Bell was unconvinced, and encouraged DeFreitas to see him at Harvard for further evaluation. Just like the ME/CFS patients unable to travel to see their doctors, she was simply too ill to make the trip.

Later in Osler's Web DeFreitas said, "I could see myself twenty years from now, when I'm a high school biology teacher and someone calls and says, 'Hey they just found a retrovirus in CFS.' And maybe that's how it will happen. And I know how I'll feel -- I'll feel great."

On the flip side, the NIH recently awarded Mikovitz's team and London researcher Dr. Johnathan Kerr a $1.6 million grant from the National Institute of Allergy and Infectious Diseases (NIAID) to continue research into the disease mechanisms of ME/CFS. We can only hope this will be enough to cover the plane tickets of anyone who doesn't follow Mikovitz' research protocol. And ME/CFS patients can take heart that, on the day of this writing, amazing ME/CFS activists, researchers, and doctors are speaking at the Chronic Fatigue Syndrome Advisory Committee (CFSAC) to provide advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for the Health of the U.S. Department of Health and Human Services.

So how do we keep the momentum going?

Still, we cannot be -- and I can now use this word properly, as few have done in talking about my illness -- politically fatigued at this juncture. Hillary Johnson wrote, "Indeed, in light of the Science study released today, what may have seemed like sheer incompetence and political maneuvering in the early 1990s needs to be re-examined by the U.S. Congress. It’s not a minute too soon to utter the words, 'Class action lawsuit,' either. "

Fortunately, ME/CFS patients can Tweet, post to Facebook, blog, and create viral interest in what is going on now -- which was not true in 1991. Let's not recreate Michael Moore's sad-but-hilarious "1st Annual Gulf War Syndrome Fun Run" where limping and wheelchair-bound GWS patients (often diagnosed now with ME/CFS) tried to slowly stagger toward the capital with their oxygen tanks. But let's do ask for the help of our able-bodied comrades this time around, who might be more willing to Tweet than to march.

At the very least, there are a lot of questions to be asked about why nobody tried harder to replicate the research of DeFreitas using her exact methodology, or why the CDC used a pathetic "lack of funds for plane tickets" excuse as to why they wouldn't do the research properly. True, those were pre-Priceline days, but come on: I'm fairly sure a donor in the ME/CFS community would have sprung for plane fare if it meant forestalling decades of agonizing pain.

_____________________________
UPDATE:
Now THIS is what I'm talking about -- a brief video from the CFSAC meeting criticizing Reeves: