Unexpected news came today that Dr. William Reeves passed away last night. Dr. Reeves was head of the CDC’s CFS program from 1992 through 2010, and was a polarizing figure both inside and outside the agency.
Others have chronicled the complicated history of CFS at the CDC. Dr. Reeves was the whistle blower who revealed misappropriation of funds allocated for CFS research in 1996-1998. His revelations resulted in an investigation by the Inspector General and the return of $12.9 million to the program between 1999 and 2004. The investigation also led to Congressional oversight of the program during that time period.
But after that oversight ended, the CDC’s CFS program increasingly shifted its focus to more psychosocial theories of the illness. In 2005, the “empiric definition” was published, a definition that has been shown to misdiagnose people with primary depression as having CFS. By 2008, the CFIDS Association (at the time a contractor to CDC) published results (pdf) of its own inquiry into the financial irregularities of the CFS research program. In the spring of 2009, the public had an opportunity to offer comment on CDC’s draft strategic plan for the CFS program. In my comments at that meeting (pdf), I said, “If CDC fails to address the systemic problems within the CFS program, if corrective measures are not undertaken to address the wasteful spending and lack of accountability, then any five-year strategic plan will not be worth the paper it is printed on. Moreover, the opportunity costs of allowing these conditions to continue are incalculable.” This strategic plan was mothballed at the end of 2011 with no explanation and no word on whether or when a new one will be drafted.
After the Lombardi et al. paper was published in Science in October 2009, Dr. Reeves told the New York Times that he did not expect the findings to be validated. To advocates, CFSAC members and others, this was a prejudiced statement, reflecting Dr. Reeves’ apparent bias is favor of psychosocial explanations for CFS. With no explanation and little fanfare, Dr. Reeves was removed from his post as head of the CFS program in early 2010.
I met Dr. Reeves in November 2006. In preparation for the launch of CDC’s public education campaign on CFS, I was asked to participate in a series of interviews with Dr. Suzanne Vernon, then a CDC scientist (now Scientific Director of the CFIDS Association). Dr. Vernon and I received several hours of media training, and Dr. Reeves attended the session. I did not have much opportunity to speak with him, but he left me with a sharp impression of his strong personality and confidence in his views.
Dr. Reeves was a lightning rod for criticism of the CFS program at CDC. But his transfer out of the program did not change everything. Progress has been slow in coming, if it is coming at all. Dr. Reeves left a large legacy behind him, and much of it was negative. But it would be an oversimplification, and a strategic mistake, to blame all the problems of the CDC program on one man. And in the end, he was a man and not a caricature. He has often been viewed as disdainful of the suffering of people with CFS; we should not make the same mistake and be disdainful of the pain his family and friends must feel at his passing.
Update August 9, 2012 – The New York Times published an article about Dr. Reeves on August 8, 2012, and notes the cause of death is unknown.
I really don’t care about his pain. So many people have died and countless lives have been completely destroyed because of this man. Whether he was just a figurehead or not, he still went to work every day knowing that he was preventing seriously ill patients from receiving the medical care that they desperately needed and deserved. He used funds from Congress fraudulently: researching his own pet project, “Reeves’ Disease” instead of the disease, CFS, for which that funding was designated. I only hope that the CDC has the sense to disown his views and his legacy so that research can go forward.
“Dr. William Reeves passed away”. Are you sure? No other news outlet seems to be picking this up nor is there anything stating this as your site and CFIDS. “The
reports of my untimely death are greatly exaggerated” Mark Twain
Jane, the CFIDS Association reported this on their Facebook page this afternoon. As far as I can tell, it is legit.
Gee, was he REALLY sick or was it just all in his head? Was he abused as a child and this is the outcome? Bet he didn’t try hard enough to get over his mental illness.
Sorry, but after the damage and deaths that man has caused so many millions of people I simply can not bring myself to have one ounce of any sympathy. Actually, he is now out of the way and can’t create more damage for the ME sick, especially the young children and teens. Many deaths, especially the young ones, sit on his dead head.
well, How “veddy, veddy, interesting!” isn’t it funny that i was just typing a letter to three class action law firms this very week about a multi-billion lawsuit against HHS, CDC, NIH, and i was MAKING 100% SURE to include Dr. Willie-Boy Reeves as a defendant! That bastard and i sparred publicly for 20 years about the severity (or NOT) of M.E. and FMS, and GWS, and MCSS, and Chronic LYME disease. My late, great Father worked for 14 years on Capitol Hill as the chief Lobbyist for Mr. J. Paul Getty, the richest man in the world at the time. I have beaucoup contacts on capitol HIll. after i accused the Military of covering up the newly named “Gulf War Syndrome” in 1991 LIVE in 165 countries on CNN’s “Larry King LIVE”, Willie Boy Got back to me and said that “CDC takes ALL these comments seriously and GWS will be investigate fully!”…and we went back and forth in person and at various conferences. He was always just barely DISGUISED in his disgust towards my comments that these were almost ALL cases of “different insult, with the same result…complete and crushing disability!”…and then Lo and behold, around 1996, i got a call at home from a very good capitol hill source, and this person told me, “YOU should have been in this classified hearing on the Hill today. Dr. Reeves was testifying about GWS. and one of the Senators asked him directly if “CFS and GWS could be related?” and my contact said, “Dr. Reeves paused and looked around behind him as if he was surveying the room for anyone who might contact YOU and rat him out….” and then he turned back to the Senator and Said, “Well, Sir, a Mr. Hennessy and His group have been correct early and often about the links between CFS and GWS. and as of Now, i would have to say that these conditions are so similar, that they are virtually identical!”….and i was skeptical, even though this source had been right on the money in the past. and just two weeks later, i saw a short piece on the CBS evening News, and there was Dr. Reeves cornered in a hallway by a CBS reporter asking this very question and he gave the EXACT same answer on tape that he had given in the classified hearing. he never mentioned RESCIND, INC. or us, but he did say, that “current thinking is that CFS and GWS are not just similar, but virtually identical conditions!”……what i say is GOOD RIDDANCE! i just wished for the chance to DEPOSE the bastard under OATH! and then RUIN his family financially for generations with the biggest monetary award possible! xoxoxo TMH. http://www.rescindinc.org and http://www.may12.org
It seems to me that that the William Reeves saga was a symptom of a much larger problem in medicine: somatization as waste basket. Anything that mainstream medicine can’t come up with a quick and familiar answer for is at risk of going into the “mental” bin. Makes life simpler for many folks in the profession, as long as they don’t have strong yearnings for truth, justice, etc.
He was my friend. I will sorely miss him. I think these comments that rage against him are really over the top. He was one person. He didn’t have that much power except that this issue mattered to him. Damage and death caused by him? I think not. He spent much of his life trying to figure these issues out. You act like he had control of the destiny of the world. He didn’t share your opinion. He stayed open to searching for answers that hadn’t been considered. That’s it. He fought for funding for your issue at his own expense. So good luck finding another scapegoat for your rage. He loved his wife, he made his friends feel cared for, he made me laugh, he was always very generous with his time whenever I’d stop by to talk with him. May he rest in peace or have great fun in the spirit world.
@Oona
If this comment is intended as satire, then it is effective. If it’s serious…good grief. It would seem you lack an understanding of what Dr. Reeves’ views were, how that translated to official CDC policy, and how much suffering that has caused and continues to cause. You needed to defend him? Wow.
Whether it was declaring that what happened in Incline Village was NOT chronic fatigue syndrome; authoring the Empiric Definition; authoring a study claiming that CFS is a matter of personality disorder; or lording over a website that discouraged clinical testing for millions of severely ill patients all over the world, this man’s legacy is absolutely disgusting. You want to talk about his relationship with his wife or family? I’m not particularly interested in going places that some would consider ‘over the top.’ But if you weren’t expecting some sort of pushback, then it would seem you don’t know the damage to so many human beings, in spite of plenty of available evidence to the contrary, that this man wrought.
If his ability to make people laugh was one of his great achievements, he should have been on the stage of a comedy club and not a platform where millions of people’s lives were at stake.
Dr. Reeves told the truth on the name/definition issue
Excerpt from May 2007 CFSAC Meeting Minutes: Dr. Reeves: I just want to make a comment on the name. That is not a public health marketing issue; that is a scientific issue. I would like to point out that names are not just assigned willy nilly by HHS or CDC. There is not a published international case definition for CFS/ME. There was an internationally-accepted definition of CFS developed in 1994 that has more than a thousand references in the scientific literature. I am not aware of a published, internationally-used case definition for an illness called CFS/ME. [* or for ME/CFS]
There’s no such thing as ME/CFS or CFS/ME.
William Reeves’ death does not change who he was or what he did–and he was a cruel man who caused derision for the illiness which stole my life and caused me 27 years of pain, and he stalled the research by giving the disease a silly name and creating a crazy definition for it. By doing this, he not only caused me 27 years of illness and the deaths of many of my friends, he also caused many thousands of people to get the illness which might have been prevented. The fact that he is dead now does not excuse his evil actions.2 seconds ago ·
I do not think anyone in her right mind wishes death upon another person, but we did not do that. We did not cause Dr. Reeves’ death, while he did cause the death of many people suffering from M.E.–some of them good friends of mine. And I resent the way the CFIDS Assn. is lionizing him; he is not a hero. He was a cruel man and his death does not change that fact.
Hi Oona,
I’m sorry for the loss of your friend. Whenever someone dies, I feel sympathy for that person’s family and friends. Bill Reeves is no exception.
That said, Reeves caused enormous harm to ME and CFS patients–perhaps more harm than any other single person. Pretending otherwise is whitewashing history. The CFIDS Association of America, especially Suzanne Vernon, should be ashamed for enabling so many of his misdeeds.
Even as you mourn your friend’s death, you must also mourn his legacy. Directly and indirectly, he caused death and suffering for millions worldwide. And now he has escaped accountability.
It occurs to me that there may be people reading this who just might be horrified at the treatment received by a man who has just passed on. I can’t condone outright nastiness or rudeness under such circumstances, but, in fairness, there are a lot of people–millions, and that’s no exaggeration–who have every right to be as angry at this man and what he has done in his career as they are, even if some of the anger has brought forth comments that may well be ‘over the top.’
So if you’re reading this and are perhaps puzzled at the vitriol, here are a couple of links that might explain some of the controversy. The first is by New York Times reporter David Tuller, posting a lengthy guest blog on Professor Vincent Racaniello’s Virology Blog. Professor Racaniello is a member of the CFIDS Association’s Scientific Advisory Board.
http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/
There are a few other sources that also cover this…um, what was it referred to as? Oh, yes. This ‘issue.’ The one that we should be grateful to Dr. Reeves on the basis of his involvement. Okay. Check. Well, there are a few places one could go (though if one wishes to avoid vitriol, I’d stay away from Mindy Kitei’s “CFS Central” blog). There is a good deal of information in places like cfids-cab.org. Osler’s Web would be another prime source, but unfortunately that site is not available at this time.
But I will recommend one blog in particular–Mary Schweitzer’s “Slightly Alive” blog. I won’t post specific links to each entry, but Dr. Reeves is mentioned prominently in the majority of the blog posts, all of which are well worth reading.
http://slightlyalive.blogspot.com/
Between those two places, I believe a fairly accurate picture emerges of Dr. Reeves (if only the professional, not the personal) and his approach towards CFS. Those of us with a devastating illness that affects neurological function, the immune system, endocrine, etc., have been marooned by the CDC, which chooses to study cohorts that do not define what CFS was coined to describe in the first place. That would be all fine and well, but for all of us who have been denied treatment, credibility, dignity, and in some cases, diagnosis; nothing is done except Emory psychiatry studies that suggest we developed a fatiguing illness for which there are no tests and no markers, because…we were abused in our youth, sometimes sexually. Ahem. Touching eulogy about how this man had the ability to bring a smile to someone’s face is, with all due respect to Dr. Reeves’ family and friends, what is actually inappropriate, far more so than even the nastiest posts I’ve seen pulled from various fora over the course of the day.
Or, put more succinctly: how could you work with this man and not know about this? To the extent that you would belittle those with contrary views by labeling it a difference of opinion? No, sorry; the contrary views are the correct ones, and Dr. Reeves has played a prominent role in what is, in my view, the greatest scandal in the history of modern medicine. If you’re okay with that, then all I can say is have a great day.
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I am sorry for the suffering caused by disease. I hope everyone in this community is healed. That has always been my sincere wish for people who struggle with illness. May we all move forward with compassion and hope for better days ahead. Thanks.
@oona
If that is true Oona, then start studying patients by the Canadian Consensus criteria, and start using the money to do real research rather than putting it into the bullshit psych studies that belong on a scrap heap and are of absolutely no help to us except to stigmatize us and prevent us from getting real treatment.
Sudden death. Could that mean suicide? Was he terrified something dirtry was going to come out and his life would be forever changed and he just could not deal with that? What’s the cause of death? Anyone know? Heart attack sounds fine at his age but I do want to know. Let’s see what dirty comes out now that Reeves has left the planet. Moderate this one!
This i the sort of thing that makes you hope that there is an afterlife, and a place of pain and suffering within it. Because if there is…………….
This is the sort of thing that makes you hope that there is an afterlife, and a place of pain and suffering within it. Because if there is…………….
Sadly stated, because I have no personal claim to eternal salvation, but William Reeves’ passing will be mourned by few, I think.
I was drawn here by a link posted on a nerlay dead CFS yahoo group. I read the words you have wrote and feel like I’m looking into a mirror. I applaud your desire to help people understand the true devil that CFS/CFIDS is and I understand how disheartening it feels to not be with the others who are in your age group, to see them in the distance living a normal’ life while you’re stuck on the bench; to feel afraid of chasing people away with just the mention of chronic fatigue’. I applaud you for being strong enough to fight to live with this beast and I give you my support as best I can over the vastness that is the internet.D&C 18: 10 Remember, the worth of souls is great in the sight of God. One of my favorite, uplifting scriptures. May it bless you with strength and uplifting feelings when you are down.
I agree, Patricia.@Patricia Carter
@Oona
He sounds like he was a good friend to you and some others. However, you have no understanding of what incredible damage Dr. Reeves intentionally did for decades to the ME science and patients.
@Jay
Excellent points. Thank you, Jay.
En todo caso el Dr. Reeves es el responsable del curso que tomo la investigaciòn . El elige una lìnea de investigaciòn y ademàs dispone fondos para investigaciones impresentables como las de la Universividad de Emory sobre abuso sexual. Es responsable de dilapidar esos fondos. Por supuesto la responsabilidad por lo que ha pasado con esta enfermedad no es solo de èl. Y deben se juzgados todos.Muchos deben haber hecho negocios con semejante barbarie. Los pacientes ,los familiares tenemos todo el derecho del mundo a saber que ha pasado. LA sociedad en el mundo lo necesita para que no se repita.
En cuanto a que era cariñoso y simpàtico …..,no cambia su responsabilidad. Esta investigaciòn ha prolongado enormemente el sufrimiento de muchìsimas personas,en nombre de esta aberraciòn se han torturado muchìsimas personas con trtamientos disparatados. Hitler tambien amaba a sus perros.