The First Retrovirus in Chronic Fatigue Syndrome (ME/CFS)
“And suddenly I could see myself 20 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 – it’ll feel great” Elaine DeFrietas
Chronic fatigue syndrome (ME/CFS) patients, of course, weren’t the only ones to feel the sting of this mysterious illness – their advocates have as well. Certainly there’s no more disheartening story on the researcher end than Elaine DeFreitas whose career rose and fell on the horns of the dilemma that has been chronic fatigue syndrome.An accomplished researcher with 20 plus publications under her belt after her CFS paper she would publish a few more and her career would be over – an entirely unforeseen end for a woman Hilary Koprowski hired on the spot, later saying “I saw in her an extremely clever, inventive and driving person. She sinks her teeth into a problem. And she’s enormously careful.”
By the time it was all said and done Dr. DeFreitas career and health were shattered, researchers shied away from CFS like it was the plague, and the CFIDS Association would learn a hard lesson about the politics of CFS. It’s hard to find much good now that came out of that exciting and disturbing two year span when patients hoped the answer was close at hand.
Given that many patients believed Dr. DeFrietas” finding had never ever really been disproven, it wasn’t surprising to hear the rumors that Dr. DeFreitas’ virus had been rediscovered pop up quickly after the XMRV announcement. It took about a month for the WPI to put those rumors to rest but it turns out that a simple rereading of Osler’s Web would have sufficed; Dr. Peterson had pulled XMRV out of blood that had been frozen for over 20 years – Dr. DeFreitas asserted that her virus hardly appeared to tolerate freezing at all.
The great majority of the material for this article was taken from Osler’s Web and a rereading that book suggested that what happened to Dr. DeFreitas and her retrovirus was more complex than the scuttlebutt suggested. Yes, CFS was the butt of jokes at the CDC, and yes, the CDC could have and should have done more and other things, but two figures within agency, Dr. Thomas Gunn – the head of the CDC program on CFS and Dr. Folks – a top virologist at the agency, both desperately wanted to find the virus and they tried for over a year to find it. Dr. Gunn ultimately charged that the CDC wasn’t interested in finding the virus, but Dr. Folks, the retrovirologist in charge of the investigation, ended up believing Dr. DeFreitas’ virus was nothing more than a contaminant, one of the many endogenous retroviruses that we all carry.
Reading Osler’s Web for me punctuated what a risky and complicated situation Elaine Defreitas, the CDC, the CAA and CFS Community was in. Hillary Johnson came to deplore the CDC with a passion and the CFIDS Association with an almost equal passion. We don’t hear the CDC brass’s side – they probably wouldn’t have talked anyway – and we certainly don’t get the CAA’s side, but we seem to hear everything the central characters in the book have to say – which makes it a fascinating read.
The Announcement – Kyoto, Japan (1990)
Dr. Elaine DeFrietas hadn’t just stumbled on this retrovirus. Several years prior she’d been contacted by – who else – Paul Cheney, and CFS had slowly come to take more and more of her time. She’d been working on her assays for over two years, testing and retesting them until she’d got them right. A careful researcher at the renowned Wistar Institute under a renowned virologist, Hilary Koprowski, Dr. DeFreitas had used multiple techniques to check her findings and had taken elaborate precautions to guard against contamination.
She knew that the internationally renowned Gallo team had fruitlessly scoured CFS patients’ blood for retroviruses but her findings seemed irreproachable; 4/5 of Dr. Cheney’s adult patients and 3/4 of Dr. Bell’s pediatric patients were positive, as were 43% of healthy adults in close contact with the patients and even a third of healthy playmates for children with this disease. None of the healthy non-exposed controls were, meaning chronic fatigue syndrome patients appeared to be carrying a readily infectious retrovirus. (At one point Dr. Bell posited that 15% of the children in his home town, Lyndonville, would eventually get sick.)
With her mentor prodding her, Dr. DeFreitas and Dr. Cheney delivered the news of a possible retrovirus in chronic fatigue syndrome to a few lethargic, uninterested researchers at a Neuroscience Conference in Kyoto, Japan in Sept. 1990. The researchers showed little interest but with Hilary Koprowski standing by her side, the media took note. By 3 AM that morning the international phone lines were humming. A day later Dr. DeFrietas and Dr. Cheney disembarked to a media frenzy in San Francisco. Both their world and ours changed overnight.
The tone emanating from the CDC was, to put it generously, ‘skeptical’; in-house, chronic fatigue syndrome tended to be treated with derision but Tom Folks, the head of the CDC’s retrovirology division, harbored few doubts that she was correct; Elaine DeFreitas worked for Hilary Koprowski – one of his idols – and if Hilary Koprowski was standing behind her Folks thought her data was undoubtedly rock solid. Plus he was intrigued by Dr. Koprowski’s idea of smoldering central nervous system viruses sparking an array of unusual conditions including CFS. Assuring Dr. Cheney that Jon Kaplan, a notoriously harsh critic CFS at the CDC, would not be involved, he quickly agreed to attempt to replicate her findings. With Dr. Gunn, an outspoken advocate for CFS, heading up the program, Dr. DeFreitas appeared to be in good hands.
A Halting Start
Things quickly went south with the CDC collaboration, though, when Dr. Folks was unable to replicate Dr. DeFreitas’ results. Part of the problem revolved around Dr. DeFreitas early announcement. Because she had announced far in advance of her publication date, she wasn’t at liberty yet to provide researchers with her keys to the puzzle – her gene sequences and her assays. With the public announcement still ringing in his ears, however, Dr. Folks felt compelled to mount an effort. (It’s difficult to tell how in the dark the team was. In Osler’s Web they are given Dr. DeFreitas’ complete guidelines later. (Dr Heineine, however, later states they were given the complete protocols early in the process).
A Finicky Virus – It didn’t help that the virus turned out to be rather finicky. For example, Dr. DeFreitas used a machine called a DNA extractor which the CDC – a center of viral studies in the US – didn’t own and wasn’t about to purchase. Dr. DeFreitas also stated that the virus needed seven days in the autoradiograph for the viral bands to appear. The CDC, on the other hand, apparently had never needed more than 4 days in the autoradiograph for a viral band to appear. According to Osler’s Web the CDC never acquired a DNA extractor nor did they ever use the autoradiograph for more than four days.
A second round of tests produced negative results as well. With few positive results and the already tenuous funding for the project drying up – despite the ample congressional funding allocated for the study of the disease – Dr. Gunn went on the offensive penning an aggressive memo to Director Mahy questioning the efficacy of the retroviral work and the agency’s attitude toward the disease:
“I think it is high time that CDC began to treat the study of the syndrome with the same degree of concern would be afforded to any other serious illness”
“I am appalled at the vicious attacks I have heard made on Dr. Nancy Klimas, Dr. Elaine DeFreitas, Dr. Komaroff and others”
and accused the agency of studying the disease in a ‘frivolous’ manner.’
Dr. Gunn had been a visible and aggressive advocate for the disease but he was an epidemiologist not a virologist and Director Mahy took him to task for trying to insert himself into the project. He ordered him not to involve himself in the retroviral work, not to report the agency’s progress to Dr. DeFreitas and not to provide statements to the media or to other researchers in the field – an order that was later rescinded. In fact, Dr. Folks continued to confide in Dr. Gunn and Dr. Gunn would continue to have a say in the retroviral effort, but the episode indicated the disharmony in the agency over the disease. The disagreements did have one positive effect, however. Dr. Folks got the beta scanner he wanted and the speed of his work increased tremendously.
An Invitation Declined – With two test failures behind him, Dr. Folks invited Dr. DeFreitas to observe his lab procedures firsthand – an invitation that she almost inexplicably, given the stakes involved, turned down. Instead she invited the CDC to come to her lab, which they in turn declined, citing a lack of travel money.
The CDC then offered to send their samples – on ice – for her to test. At this point both she and they came to understand they’d been working differently; Dr. DeFreitas never froze her samples because doing so broke up the DNA sequences thus disturbing her results. The CDC, on the other hand, quickly froze all their samples as a matter of course arguing that, yes, freezing did break up DNA, but that it only affected the efficacy of the testing when the viral loads were very, very low. They noted that Dr. DeFreitas had recorded finding very high viral loads in her samples . (Ultimately the CDC tested both frozen and unfrozen whole blood).
The CDC’s troubles persisted. Even with Dr. DeFreitas’ gene sequences finally in hand, and despite trying multiple combinations of temperatures, buffers, etc., they continued having trouble getting the specificity of their primers up to snuff. Meanwhile, Oncore, a small commercial diagnostic lab in Texas, developed a PCR test based on the Wistar paper and reported that 70% of their 500 samples from Dr. Cheney, Dr. Peterson and others had tested positive.
In a detailed letter to the CDC lab, Dr. DeFreitas enumerated a series of errors she felt the agency was probably making and invited the CDC to come to her lab. That, according to Hillary Johnson, was impossible; while the agency had been given $2 million for CFS research they had budgeted only a small amount of money for travel – and it was gone.
The Virus Captured – While the agency continued having difficulty replicating her results, Dr. DeFreitas appeared to have actually found the virus in human cells and it was a doozy. As the virus came into focus it became clearer and clearer that, despite its genetic similarity to HTLV-2, it was not that virus at all. In fact, exhibiting properties of both foamy and lenti-viruses, it didn’t look like any known retrovirus. Interestingly, giving the fatigue problems in CFS, Dr. DeFreitas seemed to be finding viral fragments in the cell’s energy factories – the mitochondria.
Finally, Progress – Tom Folks was making progress in one area, however; after months of effort the CDC finally achieved identical ‘sensitivities’ to Dr. DeFreitas’ assay, and after checking on his samples Dr. DeFreitas agreed. With this breakthrough, Dr. Folks announced to the CFS Steering Committee at the CDC that he might be close to duplicating her work.
A Breakthrough – Then came some big news; Dr. Folks announced he’d found the virus in all six of Dr. Bell’s samples, 2/3 of the Atlanta patients and none of the local controls. Rerunning the test at a different stringency yielded similar results – it appeared a legitimate breakthrough had occurred. At the CDC, Dr. Gunn reported that the CFS jokes had stopped and the agency began, for the first time, to bring its resources to bear on the disease. They lined up the purest sample of patients they could find; people who met the definition but without any psychiatric overlays. If Dr. DeFreitas’ test could differentiate these patients and healthy controls, both she and the CFS community would be in business. This, Asst. Director Dowdle said “is what we’re good at.”
There was still one looming problem; Dr. DeFreitas’ primers appeared to work on her patients and some CDC patients, but they still failed to identify HTLV-2 in a standard cell line – something Dr. Folks felt they should have done given the genetic similarity between the two viruses. Finding HTLV-2 in a standard cell line would indicate that Dr. DeFreitas had found a legitimate virus instead of some gene sequences belonging to what is called an ‘endogenous retrovirus’.
The Unraveling – in the midst of all this, trouble reared its head. In a Sept 1991 meeting of the CFS Advisory Council, a wide-ranging group containing the central figures in the viral hunt, a Scottish molecular biologist and CFS researcher, John Gow , who had been collaborating with Dr. DeFreitas on a separate replication study, announced that despite spending “many months and many thousands of pounds” he had been unable to find any sign of an exogenous (acquired) retrovirus. Based on his results, he felt Dr. DeFreitas had found nothing more than an endogenous (benign) retrovirus. All the major players, with the notable exception of Dr. DeFreitas – locked in a custody battle over her son – were there.
Upon questioning, it became clear that Dr. Gow had used a different (brand) of enzyme in one part of the study. Later the Gow team insisted that it made no difference: an enzyme was an enzyme and the one that they’d used had worked for them for years. In the aftermath they blamed Dr. DeFreitas for not being forthcoming with all of her work, and reported that she had not responded to a request that they visit Wistar so they could do a hands-on overview of her techniques. They noted that as University scientists (and long-time CFS researchers) they had no axe to grind.
Dr. Folks felt Dr. DeFreitas’ inability or unwillingness to attend the meeting or send a representative in her place hurt her. He noted that the specific enzyme Dr. DeFreitas used had not been in her paper and he felt that any lab that followed the procedures based on her paper should be able to reproduce her results. In private, despite his earlier success, Dr. Folks reported that his team was finding much the same results as Dr. Gow’s team.
Trouble in Wistar – Back at Wistar, Elaine DeFreitas’ foundation was crumbling. Her mentor Hilary Koprowski had been fired for administrative lapses and his successor was casting a wary eye at her inability to acquire NIH funding and the length of time it was taking the CDC to confirm her results.
Then, to her utter surprise, her long-awaited grant at the NIH failed to get funded. In hindsight the reasons appeared pretty clear. Dr. DeFreitas had received NIH grants before but none of them had come laden with the kind of baggage this one had. Not only was she dealing with a controversial disease, but the way the grant proposal had come about was problematic for such a conservative agency. The fact that Dr. DeFreitas announced her findings in Japan six months prior to publication was one black mark. The media conference in San Francisco was another and her collaborators were another.
It’s difficult to parse Dr. Cheney’s contributions during this period, but in retrospect it’s clear that they were both positive and negative. An almost omnipresent figure in Osler’s Web and an ardent and articulate advocate, Dr. Cheney was a source of hope to the patients, but his tendency to speculate on research matters in public and to tie together loose ends with rather firm knots drove some researchers to distraction. The more Dr. DeFreitas got to know Dr. Cheney the more she trusted his instincts, but the more Dr. Cheney appeared in the press the less and less the research community trusted him. Some researchers thought he was simply nuts. Others detected a fertile and creative mind. Whatever his many contributions to the patient, it’s clear he was no asset to anyone attempting to make his or her way through the traditional research channels.
It didn’t help either that Dr. DeFreitas’ funding ($20,000/month) was coming from a patient support organization – the CFIDS Association of America – that hardly appeared to the NIH to be an objective source of funding. With the DeFreitas team displaying exactly the wrong qualities, the hidebound NIH rejected her grant. At the same time, to her understandable dismay, a similar grant to study a retrovirus in chronic fatigue syndrome was approved for a researcher (also working with the CFIDS Association) who’d managed to stay under the radar.
The Unraveling – Meanwhile Dr. Folks’ team took a backward step; for two months they were unable to achieve the sensitivity they had in June. Without adequate sensitivity the assay would either pick up other viruses (or genetic sequences) or it would miss the virus entirely. A team of CDC molecular biologists examined the problem and suggested the Folks team, temporarily at least, drop the attempt to differentiate between CFS and healthy controls – and go back to square one. It took them six months to recover their ground but once they got the sensitivity back to snuff and started testing patients again all their healthy controls began testing positive – they were still off.
With the CDC bollixed, Dr. Gunn asked Dr. DeFreitas to do her own study of the CDC’s samples. She would test both CFS and healthy patients; if she could differentiate between healthy controls and the CFS patients, he promised the CDC would come to her lab to try to figure out what had gone wrong. With the CDC still not owning a DNA extractor, however, Dr. DeFreitas would be required to extract the DNA in her lab – an expensive task. Under severe financial pressure from Wistar, Dr. DeFreitas at first balked stating she didn’t have the time or the money to do the DNA extraction but she ultimately agreed to do the tests.
A Lifeline Disappears – The situation for Dr. DeFreitas must have been agonizing; she’d felt she’d actually located and grown the virus – a real breakthrough – but she was short of money and the poor findings at the CDC threatened her status at Wistar. The CFIDS Association had been funding her for several years but couldn’t provide the kind of financial support she really needed.
She had her own ace up her sleeve, however. Six months earlier the Chiron biotechnology firm had entered into a confidential agreement with Wistar. In return for receiving the details of her work Chiron would develop a commercial test for CFS; a prospect that could be worth millions. But Chiron also had trouble duplicating Dr. DeFreitas work. After sending an aide to Chiron for a week, Chiron’s results start matching up with hers. (One wonders why she didn’t do this with the CDC.) Chiron was Dr. DeFreitas’ bulwark – even if the CDC couldn’t duplicate the results; a successful commercial test kit by Chiron would be enough, she felt, to ensure the legitimacy of her test.
By this point Dr. DeFreitas was growing live virus in her lab and offered to send Chiron some. But then came news that Chiron, in apparent breach of their confidentiality agreement, had invited four researchers (Jay Levy, Anthony Komaroff, Gary Holmes and Stephen Straus) to discuss the project. Detecting a change in tone, Dr. DeFreitas refused to send her precious samples to the lab and Chiron backed off the project. It turned out, despite their earlier positive results, and after reportedly spending a lot of money and 8 or 9 months time, the Chiron team had also run into technical problems. Dr. DeFreitas’ lifeline was gone.
More Problems at the CDC – three months later, Dr. Folks was still detecting signs of the retrovirus in both patients and controls, leading him to believe that Dr. DeFreitas had detected an endogenous retrovirus (i.e. already present in human DNA and benign) rather than an exogenous one (i.e. infective and active). Hillary Johnson reported that he was simply depressed. Unlike his other CDC counterparts he’d believed from the beginning that an infectious pathogen had wreaked its damage in CFS. Moreover, he believed, like Hilary Koprowski , that a retrovirus had probably infiltrated the central nervous system. He had no illusions about the seriousness of the disorder, calling it “a bigger disease than multiple sclerosis”.
The Final Blow – the final blow for Dr. DeFreitas at the CDC occurred when they broke the code on her analysis of the CDC’s samples in March 1992. Not only had she found only three positives but they’d all come from healthy controls. She noted that at a late stage she’d found a problem with their primaries but later getting good primers she repeated the test again and again and again with the same results: the CFS patients remained negative.
The Patient Question – the result was inexplicable to her. Dr. DeFreitas had come forth with her results for her paper only after extensive experimentation. She’d winnowed her assays down to the point where her samples had consistently tested positive or negative. In her own internal blinded experiments she’d been able to pick out the CFS patients again and again. Why had she failed now?
Was because of the patients themselves? Had the CDC, in its attempt to pick out the ‘purest’ CFS patients, excluded, perhaps without realizing it, the very kinds of patients that would test positive? The CDC simply gathered patients on the strength of their ability to meet the definition. In order to get the ‘purest’ CFS patient possible they excluded people with psychiatric conditions and in doing so they were simply following standard research protocols.
The samples Dr. Cheney was sending to Dr. DeFreitas, however, were from his cognitively challenged, neurologically hampered patients – perhaps a very similar set to the ‘psychologically challenged’ patients the CDC was excluding from their studies. Dr. Cheney had found that the virus “did not tend to show up in what we now think of as typical CFS patients – people who came down with this disorder after a mono-like illness”. He noted that “the CDC’s case definition is biased in favor of mono-like patients because of the diagnostic criteria’s emphasis on fever and lymphadenopathy. Those patients are negative.”
A Strange Virus – Even in Dr. DeFreitas’ lab the virus had played an unusual game of hide and seek; it tended to disappear in her samples when patients were most ill and then reappear when they were feeling better. Remarkably, the patient with the most evidence of retroviral infection in Dr. Bell’s cohort was an 11-year-old who was healthy at the time of testing and later (gradually) came down with CFS. Dr. Bell had actually used him as his healthy control.
Dr. DeFreitas asked the CDC to send her samples of the excluded group – those depressed, psychiatrically challenged patients – she would test them on her dole but they refused; two years later with perhaps $500,000 spent and with Ebola and Hantavirus in the news, this was the end of the line for the CDC. The paper they would write would not mention their ability at one point to differentiate between Dr. Bell’s and Dr. Cheney’s patients but only their and Dr. DeFreitas inability to differentiate between their own samples. It was, not surprisingly, a bitter blow to Dr. DeFreitas.
With the CDC test and the Chiron collaboration on the rocks, Wistar advised Dr. DeFreitas to get out of CFS research. With Dr. Klimas floating the promise of a tenured position at the University of Miami, Dr. DeFreitas decided to move on.
The Last Study – Meanwhile Dr. Gunn left the CDC promising to battle any attempts to whitewash the agency’s earlier findings and joined the CFIDS Association to offer one last study. Dr. DeFreitas, Herst Labs and Dr. John Martin would assess the presence of a retrovirus in blinded samples of Dr. Bell’s original pediatric patients, ten of Dr. Cheney’s patients and for the first time adult patients from Dr. Levine’s practice in New York. All told it would contain over 100 samples – a large study. Herst Labs had twice reported high positive rates for CFS patients and Dr. Martin was engaged in his own search for a retrovirus. Dr. DeFreitas had been able to pick out the CFS patients from Dr. Bell and Dr. Cheney patients before – she would have an opportunity to do so again. This time there would be no question of the wrong types of patients mucking up the works.
The CDC Steps Back In – At this point the CDC stepped back in to propose another study. Dr. Martin was out – instead, both the agency and Dr. DeFreitas would look for the retrovirus in nine of Dr. Bell’s patients from the original study and in healthy controls. Since the study would focus on known CFS patients it, too, would bypass the patient selection question; all Dr. DeFreitas would be asked to do would be to identify her own CFS patients; if she could do that, the agency would start again and come to her lab and relearn her techniques.
Dr. DeFreitas balked, however, after the agency stated it would reveal only at its discretion the techniques it used and would call the study ‘idiopathic chronic fatiguing illness in Lyndonville” instead of chronic fatigue syndrome. Their rapid timeline also conflicted with her more time consuming approach. She invited the agency instead to join the study the CFIDS Association was funding. They refused.
The search for a retrovirus at the CDC was not over; Folks would work with two other retrovirologists but none of their findings would pan out and a search for a wide array of retroviruses would come up negative a year or so later.
The End – Dr. DeFreitas move to Florida coincided with arrival of a fierce hurricane which prevented her from completing her part of the study on time. On Sept 19, 1992, however, the codes from the other parties were broken in a conference call containing all the major participants; it took 30 minutes to go through the results, but at the end the pattern was clear; no one had come close to correctly identifying the CFS patients. One member said “they might as well have thrown darts” and the result left Dr. Gunn furious that he’d bet the latter end of his career on the retrovirus.
Still, the DeFreitas results were not in and she stated that while the Herst lab’s tests were analogous to hers they didn’t exactly duplicate her testing procedures. The most important replication attempt remained unfinished…as it does (apparently) today. Two years later, disabled and in pain, Dr. DeFreitas retired without testing her samples. It’s hard to believe that Dr. DeFreitas wouldn’t take her last shot at testing those samples but there’s no word in Osler’s Web on the outcome of those tests, if they were done. The search for the HTLV-2 like retrovirus in CFS was over.
In retrospect Dr. Folks was somewhat incredulous about the history of the collaboration. He felt that Dr. DeFreitas’ requirement that her protocols should be reproduced exactly to the letter (i.e. use one brand of enzyme versus another) was unscientific. Any good laboratory should, he thought, based on the parameters of the paper, be able to reproduce her results. Dr. Klimas, an immunologist, disagreed.
Dr. Folks also wondered, why, with the stakes as high as they were, hadn’t Dr. DeFreitas been willing to come to their lab or, if not, why not choose another world-class retroviral lab to test her findings? (Dr. DeFreitas would later, regretfully, wonder why she hadn’t just gone to the Gallo labs first). Why hadn’t she sent all her materials to the CDC? He then listed off four labs that had tried and failed to confirm her findings; his, Dr. Gallo’s, Dr. Gow’s and Dr. Levy’s. (We can add to this Chiron Labs, Herst Labs and a Japanese team.)
(Later Dr. DeFreitas would state that her requests to visit the CDC lab had been denied.)
Still, some questions remained; why, a year earlier, had the CDC been able to duplicate Dr. DeFreitas results? What about that other set of patients – the ones with psychiatric difficulties? The CDC never examined the possibility that the virus was limited to a specific subset of patients – not in retrospect a far-out possibility given the heterogeneity in this population. Dr. Folks would assert that the virus was an endogenous retrovirus but then why was it not showing up in the cord blood Dr. DeFreitas reported sampling?
Dr. DeFreitas career, while it taken a substantial hit, was not ended by the controversy over the retrovirus. She did, after all, have a substantial track record before CFS and a tenured position at University of Miami. What brought her down, ironically, was her health. After a car accident in 1990 she slowly developed a painful condition called reflex sympathetic dystrophy. By the end of 1993 she was in a wheelchair. By the end of 1994 she was totally disabled.
In the end she would blame herself for announcing early, the CAA for pushing her into the media and asking her to do too much too early and the CDC for what she perceived to be their lackluster efforts. She came to believe the CDC never wanted to find the virus. To some extent Tom Folks would agree about being rushed; the public announcement had lit a fire under everyone – Dr. DeFreitas, the CDC, the CAA – with the result that what should have taken years was compressed into one or two. (Marc Iverson would later speculate that it would take their other retrovirologist, Dr. Grossberg, five years to track down his virus. The CAA would keep funding Dr. Grossberg’s search for a retrovirus but in a secretive manner; he and they had learned the cost of going public.)
With PCR’s being among the more expensive tests, its clear that resources were also a key issue for everyone. After criticizing the CAA for “giving Dr. DeFreitas up” Dr. Bell noted that no small poorly supported patient organization had the money to fund the kind of research Dr. DeFreitas needed. Indeed the CFIDS Association was Dr. DeFreitas sole source of funding for years and continued to fund retroviral research for years afterwards with no discernable return on their money. None of the three retroviral investigations the organization was funding at the time (Dr. De Freitas’, Dr. Martin’s and Dr. Grossberg’s) panned out. Seven years later the CFIDS was still funding Dr. Grossberg but no papers were ever forthcoming. In 2001 the National CFID’s Association’s attempt to find an HTLV-2 virus in ME/CFS patients failed.
What Dr. DeFreitas desperately needed was NIH money – which was not forthcoming – or a success at the CDC, or Chiron or Herst (which could conceivably gotten her NIH money)- unfortunately neither were forthcoming.
According to Dr. Folks the CDC spent about $500,00 on the virus before the higher-ups at the CDC drew the noose on Dr. DeFreitas’ work .
Conclusion? – the retroviral field is both a difficult and expensive one. Dr. DeFreitas was no novice and she was working under one of the top virologists in history. Their work – focused on the effects of retroviruses on the central nervous system in diseases such as multiple sclerosis – seemed perfect for the task at hand. Yet they failed. They may very well have got it wrong; the evidence suggests, in fact, that they did and they wouldn’t be the first – but it was clear that resources – or the lack of them – also played a role.
Centers For Disease Control – In some ways the Centers For Disease Control (CDC) is not in such a different place today than it was almost 20 years ago. Yes, the former head of the CDC stood up at a National Press event not long ago and proclaimed that chronic fatigue syndrome was a real disease. Yes, ME/CFS has gained legitimacy over the years and it’s rarely discussed, at least in the US, in purely psychological terms. But it’s clear the CDC does not believe ME/CFS is an important or significant disorder.
The jokes may or may not still be present but the paltry budgets (even as the CDC’s own CFS prevalence figures rise) remain and indicate the disease – measured in the most important arena, funding – is still treated with disdain by the agency. How else to explain spending $3 million a year on a disease that the agency’s own studies indicate is more prevalent than breast cancer, more economically costly than asthma ($200 million/year NIH funding) and can be as disabling as multiple sclerosis? Dr. Gunn’s request of 18 years ago “that CDC began to treat the study of the syndrome the same degree of concern would be afforded to any other serious illness” goes unfulfilled today.