CDC ME/CFS Chief, Dr. William Reeves Passes: A Look Back

[caption id="attachment_12979" align="alignright" width="214"] Dr. Reeves, past CDC CFS chief, died on August 2nd[/caption]

A strong and forceful personality who vowed to 'be the last man standing' in ME/CFS, Dr. William Reeves died at the age of 69 on August 2nd. The head of the most prominent chronic fatigue syndrome effort in the world for over ten years, no one made a bigger difference in how this disorder is viewed and treated.

Reeves has been protrayed as a behaviorist but the truth was more complex than that. With early studies focusing on HHV6, immune responses, endogenous retroviruses, mycoplasma and gene expression Reeves focused mostly on pathophysiological mechanisms. The 2005 Pharmacogenomics project in 2005 was a bold and innovative attempt to squash as much data together as possible and its open-ended nature suggested Reeves was not weeded to a particular interpretation of ME/CFS. His funding of the Dubbo project on post-infectious illness provided the ME/CFS research community with several important papers.

Later in his career, however, Reeves began to focus on more behavioral issues and studies focusing on psychiatric co-morbidity, early life stress and coping issues began to pop up. Over the 20 years or so the CFS program was in existence the CDC had never commissioned a CBT study but at the end of his term it finally did.

Despite Reeves long tenure as CFS Research Chief his citations are fairly light. A papillomavirus researcher, pre-CFS, after his innovative lab chief, Dr. Suzanne Vernon left, Reeves seemed a bit out of his depth and the largest CFS research program in the world became strangely irrelevant. The CDC's focus on allostatic stress and metabolic syndrome - two issues they introduced to the research world - and those issues fizzled out. By the time of the 2009 International ME/CFS Conference in Reno the CDC program had little to offer, the 'mojo' as Kim McCleary put it, was gone.
'The Dictator'


Referred to as the 'dictator' within the CDC, Reeves commitment to going it alone ended up costing him and the program. His decision to produce the criteria for the Empirical Definition in-house left the program isolated and out of touch. Boycotted by the research community, the ED proved to be an anchor around the CDC's and Dr. Reeves neck as the program charged ahead with a definition no one else was using.

With his forceful personality Reeves could evoke hostility from his peers. His colleagues on the CFSAC committee immediately voted for his ouster soon after he stepped down from it. By the time she left to join the CFIDS Association, Dr. Reeves former lab Dr. Suzanne Vernon was hardly on speaking terms with him and soon afterwards the CFIDS Association's investigation suggested a program that had come off the rails both financially and scientifically. Privately some researchers spoke of a 'rogue' research effort and in 2010 Reeves was unexpectedly and without explanation removed from the CFS program.
The Behaviorist


Reeves may not have focused on behavioral issues in his research work but the CDC Toolkit revealed a man firmly committed to a simplistic interpretation of ME/CFS treatment. With the Toolkit and its limited palette of treatments options the richness of this complex disorder was lost. While Reeves epidemiological studies highlighted a severe and often disabling disorder, his Toolkit suggested the opposite - a syndrome that could be managed simply by CBT, GET and sleep hygiene. It appeared over time that his stance on the disorder softened; the focus on high rates of disability was lost in his insistence that ME/CFS was a disorder of 'unwellness' - not a disease at all.
Few Successes


In the end the biggest problem with Dr. Reeves era at the CDC was simply that it was not successful. Reeves could take credit for several important economic loss studies but ME/CFS's ongoing diagnostic issues worsened during his tenure and one has only to look at major medical websites to see the devastating effect the CDC's Toolkit has had on treatment options for ME/CFS patients.

Stimulating research leads were few and far between and the number of missed research opportunities was large. Reeves actually began the era of big data mining efforts but the CDC effort faltered and CDC researchers such as Gordon Broderick moved onwards and thrived. The CDC missed the boat completely on natural killer cells and the repeat exercise studies.
Poor Support


[caption id="attachment_12980" align="alignright" width="300"] Dr. Reeves proved to be a poor fit for the ME/CFS research and patient communities.[/caption]

Poor support from the top didn't help. Tasked with exploring the epidemiology, causes, economic losses and providing physician education on a small budget Reeves would, not surprisingly, have trouble doing any of them well. At one point he noted that accounting for inflation his budget had eroded by 25% over the past decade. His small budget and long task list called for collaboration, collaboration, collaboration but his list of collaborative projects was short.

Reeves departure sparked a turnaround in the CFS program with Dr. Unger taking a lead on the NIH/CDS/ME/CFS research community CASA project, producing a large-scale ME/CFS physician study and her CME projects featuring prominent ME/CFS doctors.

Reeves had his successes; the Pharmacogenomics project lead to the head of the CDC, no less, publicly declaring ME/CFS was a legitimate and serious disorder and his economic loss studies are cited frequently. In the end, though, Reeves and ME/CFS was like trying to fit a square peg into a round hole; it just didn't work.

• Dig Deeper: A Look Back at Dr. Reeves CDC - reflecting on Dr. Reeves when he was removed from the CFS program at in 2010
  
• Check out Phoenix Rising's Chronic Fatigue Syndrome CDC Resource Center
  

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Sing,

Yeah, I basically agree. You know, I don't know exactly what liability would "attach" to whom under what law. Generally the government is immune except for under the federal tort claims act. I don't know if it would apply here.

But, yes generally, if you can "manufacture doubt" about what you don't want people to know, then you are 95% to where you want to be if you are a shady businessman, politician, insurance company or viral exanthems researcher. Their whole job now is manufacturing doubt about "CFS". If they can muddy the waters then no one can say you have definitely abused your office and hurt people and so youre fired, or you are guilty beyond a reasonable doubt, or you have to pay damages to those you hurt (or if you are an insurer- "you have to pay for treatment").

I think this is on to the point, Justin. This is the area which what we have seen falls into--that of shady businessmen, politicians, etc--with an eye towards avoiding consequences: legal, financial or career consequences. And this is exactly where I think they ought to be directly threatened and exposed. Here is our target.

 

Argue any way you like about this - the failure to recognise a disease process will forever cast them into "has beens" - got it wrong.

 

As for my saying their mission is to crush us: what I really mean is that their main mission is to disappear ME, to make it seem like it doesn't exist as a discrete serious disease. They seek to crush us, so that we can't make the reality widely known....

I don't know why Unger is basically continuing on with Reeves program other than some minor positive changes. She seems like a very bright, competent scientist.

Wouldn't Dr. Reeves' program, implemented without the obvious mistakes, be worse for us?

Ember, can you elaborate what you're asking pls?

 

Sing,

Yeah, I basically agree. You know, I don't know exactly what liability would "attach" to whom under what law. Generally the government is immune except for under the federal tort claims act. I don't know if it would apply here.

But, yes generally, if you can "manufacture doubt" about what you don't want people to know, then you are 95% to where you want to be if you are a shady businessman, politician, insurance company or viral exanthems researcher. Their whole job now is manufacturing doubt about "CFS". If they can muddy the waters then no one can say you have definitely abused your office and hurt people and so youre fired, or you are guilty beyond a reasonable doubt, or you have to pay damages to those you hurt (or if you are an insurer- "you have to pay for treatment").

I think this is on to the point, Justin. This is the area which what we have seen falls into--that of shady businessmen, politicians, etc--with an eye towards avoiding consequences: legal, financial or career consequences. And this is exactly where I think they ought to be directly threatened and exposed. Here is our target.

I agree

 

Who did more damage to the CFS effort: Stephan Straus or Reeves? Straus was at NIH and headed up the CFS research effort in the nineties. After deciding that he was not going to be the next Anthony Fauci, and get a Nobel Prize, for discovery of "extreme EBV infection" as a source of CFS, he effectively checked out. And decided it was all in our heads and washed his hands of us.

At that time, I think NIH had more gravitas as a medical adjudicator than the CDC. As I have mentioned before, the CDC is primarily geared toward simple epidemiological analyses. "Okay, everbody, make sure you get your flu shots. Make sure you use sun block." etc etc. They are bureaucrats first, doctors and scientists second. All you have to do is look at that absurd "Toolkit". If you can possibly manage it: ignore the CDC.

As for Straus, his peers at NIH thought he was the bees knees. Fauci wrote his obituary. Everybody said he was the very paradigm of the "good scientist", highly intelligent, and a real humanitarian. Such a nice guy, kicking us to the curb. I think this speaks to the nature of medical education in the country, which highly emphasizes mutual competition, and avoidance of looking stupid or powerless at all costs. An MS patient friend of mine said that in 1994 a disbelieving neurologist at Georgetown dragged her down the hall, when she could barely walk, scolding her for malingering. MRIs became widespread right about then, and the neurologist later claimed "he knew all along" she had MS. Doctors wonder why they become unpopular with the patients.

The same ambition that drives a Straus or a Reeves to become a "respected physician" first, then head of *something* (god help us) in the medical bureaucracy also gives them the callousness to step on PWCs without a care in the world. Getting those high MCAT scores and getting that A in Organic chemistry means you must know everything. It's the patient to be blamed if he can't be cured. PWCs, for now anyway, I say get your own playbook and work the system to your benefit, cos even now very few docs are going to take you any more seriously than Reeves or Straus.

I think that Straus was worse, but Reeves was there longer so he did more damage overall.

 

Ember, can you elaborate what you're asking pls?

Like you, I see the CDC mission with respect to us as being that of making ME disappear. Among his mistakes, Dr. Reeves bungled the Reeves et al. (2005) definition to the extent that it “has found no support outside the CDC itself:”

Others outside the CDC dismissed the new numbers as absurdly inflated and argued that the empiric criteria, like the Oxford criteria but unlike the 2003 Canadian case definition, blurred and expanded rather than clarified the disease boundaries.”

Now Dr. Under has embarked upon her own definition, and early evidence indicates that she too will blur and expand the disease boundaries.

Unfortunately, I have to challenge your statement that “the CLE produced by CDC and CAA and heavily pushed by CDC still says That 'CFIDS' and 'ME' are invalid names for 'CFS' because the first implies an immune dysfunction and the second implies neurological involvement and 'CFS' involves neither.” If you and I are referring to the same statement, that link has been removed now, and the current CDC position subsumes ME under CFS, seeming to expand and blur its boundaries.

Happily for Dr. Unger, she has the support of the Coalition4MECFS should she decide that ME and CFS are one disease, with differences being matters only of degree. Dr. Unger has managed her public relations carefully, meeting with advocacy groups individually and putting out such statements as:

Opinions of advocates, clinicians and researchers remain divided about whether CFS and ME are the same or different entities. However, we are following the discussions with interest and would consider any consensus that is reached by patient groups and the scientific community going forward.

I value Dr. Unger's competence only to the extent that I value her goals. Hence my question: “Wouldn't Dr. Reeves' program, implemented without the obvious mistakes, be worse for us?”

 

As a patient, what do *I* care what name is attached to the illness? I just want my life back, or even a tiny portion of it.

Some of this stuff just seems like arguing over how many angels can fit on the head of a pin. By the way, did they ever come to a consensus on that?

But what really came to mnd while reading this discussion was 'The Peter Principle", a book written by Dr Peter in 1969. The theme of the book is simple enough: "employees tend to rise to their level of incompetence." In a hierarchy, lots of people want to be promoted to positions of more power, control, and bigger salaries. When their work is satisfactory, that happens. When they are promoted just beyond their compentency, the promotions stop, and the organization is stuck with a marginally competent or even incompetent worker in that position. I suppose at that point the incompetent person feels a great deal of anxiety and devotes most of their effort to covering up their shoddy work. Perhaps bullying tactics are handy for covering up one's incompetence?

I have worked in enough organizations to see these ideas in action, up close and personal. It's not a pretty sight.

What happens when an organization is mostly populated with workers promoted to their level of incompetence? Would it be known as the CDC??

 

“He was a very talented and brilliant man who was very opinionated and often did not express his opinion with tact,” said Dr. Elizabeth R. Unger, who succeeded Dr. Reeves as chief of the chronic viral diseases branch at the disease centers.

http://www.nytimes.com/2012/08/09/health/dr-william-c-reeves-who-sought-cause-of-fatigue-syndrome-dies-at-69.html?_r=2

 

CDC's mission is to crush us? ...

Think of it this way...you're a career scientist - like anyone you'd like to garner acolades, promotions and more money.....so you....

a) decide the crush the legitimacy of the very disorder you're working on - hoping your negative studies and mediocre research will propel you somehow to the top of the heap. That's how you're going to make you way? If that's what you think Reeves did - and you must since he was the leader of the group for over a decade - it sure didn't work for him when he got booted out of the program...
b) you try to find an answer to a puzzling disorder that no yet has figured. You may be right, you may be wrong, you may be effective or ineffective but you're trying..

I think the second is a bit more tenable. The difference in interpretation, though, is huge...one is some sort of government conspiracy to hurt people with a disorder; the other involves researchers with different opinions each of which is convinced they are right...

There's another possibility. The news show called Primetime reported that Reeves refused to appear on camera for an interview, but he did offer his opinion to them about the Tahoe outbreak. According to Primetime, Reeves said it was mass hysteria. And as you know, it was this case of "mass hysteria" to which the term "Chronic Fatigue Syndrome" was given. Walter Gunn was a scientist at the CDC back then, and according to interviews taken by Hillary Johnson, Gunn said it was generally believed at the CDC that CFS is not real. So they just took the money and spent it on other things. The money part was later confirmed in an investigation of the CDC. But instead of firing people for this, they shuffled them around. Reeves ends up in charge of an illness he believes is not real. So what does he do. If he admits he thinks it's hysteria, then he is in the hot seat for taking money dishonestly. So he plays along. He goes through the motions. Then he waters down the definition and starts citing studies done by UK psychiatrists who use a fatigue-only definition and call it a learned illness behavior.

It strikes me that he was playing a chess game. He had no proof it was infection, but also no proof it was a mental illness. So he tries to shift the definition to fit his theory. And because he believes it's nothing but hysteria, he would see no underlying moral problem in doing this.

 

Andrew, after reading your post, an impression intensifies that Reeves fancied himself as another Signmud Freud--who ironically not only lead the grand new movement of psychoanalysis, but also profoundly erred about the cause of distress in his predominately female patients, who were seen as suffering from "hysteria". While these women had complained of being sexually abused by their fathers and male relatives, Freud made the politically astute switch from believing them to interpreting their symptoms as a repressed desire for sex with their fathers! The patriarchal, sexist culture of the day found that much easier to accept. Blame the victim. Those with low social value must be to blame rather than those with high social value. Freud's doctrinaire position harmed women and women's causes for decades afterwards. So, even though Freud is still held up grandly as "the father" of psychotherapy--someone to emulate--his legacy was shameful and harmful too.

 

As a patient, what do *I* care what name is attached to the illness? I just want my life back, or even a tiny portion of it.

Some of this stuff just seems like arguing over how many angels can fit on the head of a pin. By the way, did they ever come to a consensus on that?

But what really came to mnd while reading this discussion was 'The Peter Principle", a book written by Dr Peter in 1969. The theme of the book is simple enough: "employees tend to rise to their level of incompetence." In a hierarchy, lots of people want to be promoted to positions of more power, control, and bigger salaries. When their work is satisfactory, that happens. When they are promoted just beyond their compentency, the promotions stop, and the organization is stuck with a marginally competent or even incompetent worker in that position. I suppose at that point the incompetent person feels a great deal of anxiety and devotes most of their effort to covering up their shoddy work. Perhaps bullying tactics are handy for covering up one's incompetence?

I have worked in enough organizations to see these ideas in action, up close and personal. It's not a pretty sight.

What happens when an organization is mostly populated with workers promoted to their level of incompetence? Would it be known as the CDC??

I couldn't agree more, jimells. I never understood the tremendous waste of energy and time about the "definition" of CFS. The "fukuda" the "canadian"...who cares. As the Supreme Court said about obscenity: "I can't define it, but I know it when I see it." That's the way most patients feel about CFS.

Add to that, CFS for most patients is a constantly changing illness. I go from days where it hurts to lie in bed and breath. To days where I actually feel like I might be recovering. Sometimes exertion will result in an ungodly malaise, and other times I recover relatively quickly. And it changes from month to month, season to season. Why worry about the name, definition?

Research into such a bizarre illness is going to be trial-and-error and anecdotal, not strictly "scientific." Best exemplified by the Norwegians who are now acting on a hunch, not on recommendations from some irrelevant bureaucracy. And your comments about getting ahead in bureaucracies are spot on.

 

Ember, can you elaborate what you're asking pls?

Like you, I see the CDC mission with respect to us as being that of making ME disappear. Among his mistakes, Dr. Reeves bungled the Reeves et al. (2005) definition to the extent that it “has found no support outside the CDC itself:”

Others outside the CDC dismissed the new numbers as absurdly inflated and argued that the empiric criteria, like the Oxford criteria but unlike the 2003 Canadian case definition, blurred and expanded rather than clarified the disease boundaries.”

Now Dr. Under has embarked upon her own definition, and early evidence indicates that she too will blur and expand the disease boundaries.

Unfortunately, I have to challenge your statement that “the CLE produced by CDC and CAA and heavily pushed by CDC still says That 'CFIDS' and 'ME' are invalid names for 'CFS' because the first implies an immune dysfunction and the second implies neurological involvement and 'CFS' involves neither.” If you and I are referring to the same statement, that link has been removed now, and the current CDC position subsumes ME under CFS, seeming to expand and blur its boundaries.

Happily for Dr. Unger, she has the support of the Coalition4MECFS should she decide that ME and CFS are one disease, with differences being matters only of degree. Dr. Unger has managed her public relations carefully, meeting with advocacy groups individually and putting out such statements as:

Opinions of advocates, clinicians and researchers remain divided about whether CFS and ME are the same or different entities. However, we are following the discussions with interest and would consider any consensus that is reached by patient groups and the scientific community going forward.

I value Dr. Unger's competence only to the extent that I value her goals. Hence my question: “Wouldn't Dr. Reeves' program, implemented without the obvious mistakes, be worse for us?”

Ember,
You're right, I was mistaken. The link to the medscape CLE is dead. Great news! I haven't been following the news for the past few months, so I missed it. Maybe I should hold off commenting until I check such things. Thanks for catching it.

The new CLE is much better on the definitions, but reading your comments, I too am concerned about her repositioning definitions as being solely based on study data. This is obviously the only way to negate the CCC and ICC. I think we all can bet they have some tricks up their sleeves in producing skewed, arbitrary and invalid data to animate their new "objective" definition(s).

I do agree, especially now seeing the changed CLE that Unger is so far clearly better than Reeves was, though still really bad. let me read your posts again and think about it all.

 

As I follow these threads, one thought keeps coming back to me again and again: Are we seeing a pandemic big enough and bad enough that if fully recognized and proven, it would break the economic back of nations already on the brink? It has already been noted what a takedown like that would do to Big Pharma. Let a few million people die with their relatives believing they are crazy and lazy, cover up the real history, then get on with the same social experiments again in a few decades. Wouldn't be the first time in history. Read your Marx lately?

Cover-up fits.

I don't think it is too farfetched to believe that parts of this are coming from botched germ warfare experiments. Nor is it too farfetched to think it is coming from deliberate experiments. A huge population makes great guinea pigs. Think me silly and conspiracy paranoid. Moving on to the toxic load in the environment which is totally real... who really knows what full combination of factors are taking us down and wiping out our lives one decade at a time?

I feel completely frustrated for Drs. Cheney and Peterson and others for their efforts to bring this to light. In my mind, they are the heroes in this story, and I hope history sees them that way. They are the Semmelweis figures of our day. Bravo to the long list of doctors and researchers whose names I see over and over as I catch up after 20 years of drugged brain fog.

As for Reeves, I didn't know him by name until now. All I knew was that every time the news had information and quotes from the CDC about this non-illness that was destroying my own life, it was not good news. (During the 90s, listening to my first husband derisively say, "See??") I do feel anger now, of course. It is anger I want to direct as I get the background information into place better, and can begin writing halfway lucid, halfway intelligent letters to people who could shake this up politically. I do not want to see another Reeves in this story ever again. Yeah, yeah, I know... likely we will see several.

Personally, I do not see a remedy or cure coming, one size fits all. But recognition, symptoms management and quality of life issues could be addressed in ways that would give us back our dignity and physical comfort.

Our first line of defense is personal responsibility.

 

jimells, your explanation of the Peter Principle in relationship to the CDC made me laugh.

Fukuda, CCC, ICC, abc... who cares? I do. I've just spent decades without family or friends on board with this issue. The next four -- or five -- decades would loom large indeed if I had not found the Fukuda information a few years back. It was a life boat of sanity to me. I no longer care if family or friends get it as long as there is a community out there that does.

 

Welcome back, GracieJ

 

Andrew, after reading your post, an impression intensifies that Reeves fancied himself as another Signmud Freud--who ironically not only lead the grand new movement of psychoanalysis, but also profoundly erred about the cause of distress in his predominately female patients, who were seen as suffering from "hysteria". While these women had complained of being sexually abused by their fathers and male relatives, Freud made the politically astute switch from believing them to interpreting their symptoms as a repressed desire for sex with their fathers! The patriarchal, sexist culture of the day found that much easier to accept. Blame the victim. Those with low social value must be to blame rather than those with high social value. Freud's doctrinaire position harmed women and women's causes for decades afterwards. So, even though Freud is still held up grandly as "the father" of psychotherapy--someone to emulate--his legacy was shameful and harmful too.

Hi Sing, its worse than that for Freud. Freud interpreted every little thing his female patients said as though it were connected to sexual abuse. In some cases it might have been, but from my reading in most cases he would twist and distort patient's words to suit his ideas.

Freuds mistake was in constructing everything to suit his theory and not test his theory. I think modern psychobabble does the same - and that includes any theory about hysteria, which is a made-up unsubstantiated illness.

Bye, Alex

 

Andrew, after reading your post, an impression intensifies that Reeves fancied himself as another Signmud Freud--who ironically not only lead the grand new movement of psychoanalysis, but also profoundly erred about the cause of distress in his predominately female patients, who were seen as suffering from "hysteria". While these women had complained of being sexually abused by their fathers and male relatives, Freud made the politically astute switch from believing them to interpreting their symptoms as a repressed desire for sex with their fathers! The patriarchal, sexist culture of the day found that much easier to accept. Blame the victim. Those with low social value must be to blame rather than those with high social value. Freud's doctrinaire position harmed women and women's causes for decades afterwards. So, even though Freud is still held up grandly as "the father" of psychotherapy--someone to emulate--his legacy was shameful and harmful too.

I think Reeves big mistake - the decision to use random sampling to essentially define ME/CFS - lead to many of his later problems. Once he did that he couldn't find anything positive because the group was so amorphous - so he naturally tended to label this disorder as 'unwellness' and more of a behavioral problem than anything and began doing studies like the immune study -which looked at only 3 factors.

He should have done the opposite; he should have concentrated on patients in ME/CFS doctors clinics and tried to find subsets within that group. If he had done that I think he would have found some really interesting stuff.

 

This is interesting from his obituary

The cause of the syndrome remains a mystery. Results are expected within the next few months from a major study designed to find out whether viruses or other infections somehow touch it off.

I wonder what this is...Its too early for the CFI Lipkin study. It's clearly not the XMRV study..It could be the BSRI CDC study. The CAA has a similar study underway...

 

I wonder what this is...Its too early for the CFI Lipkin study. It's clearly not the XMRV study..It could be the BSRI CDC study. The CAA has a similar study underway...

I thought the Lipkin study had been expected for June 30 so isn't that overdue?

 

On using spin, Public Relations and dubious psychiatric inuendos and diagnoses to create doubt, aside from Magical Medicine I am finding that Walker's Skewed is looking at this very issue. A lot of it is on MCS, I have not gotten to the part where he discusses ME yet. Bye, Alex

PS I typed PR instead of Public Relations, had to change that for obvious reasons.