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

August 6, 2012

Posted by Cort Johnson

Dr. Reeves, past CDC CFS chief, died on August 2nd

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

Dr. Reeves proved to be a poor fit for the ME/CFS research and patient communities.

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.

 

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70 comments

{ 70 comments… read them below or add one }

Esther12 August 6, 2012 at 10:23 am

Dr. Reeves proved to be a poor fit for the ME/CFS research and patient communities.

Where would he have been a good fit though?

To me, he seemed like someone who ended up over-promoted and out of his depth. Not only did he waste lots of time and money, but with studies like his recent poorly designed ones with Nater, he ended up funding and publicising research which could never have generated useful data, and would inevitably serve to promote misleading prejudices about patients diagnosed with CFS. It's as if he was impressed by White and Wessely's work but didn't understand it well enough to copy it, never mind spot any problems with it. He should have never been in the position of power and authority he ended up in.

floydguy August 6, 2012 at 11:01 am
Esther12

Where would he have been a good fit though?

To me, he seemed like someone who ended up over-promoted and out of his depth. Not only did he waste lots of time and money, but with studies like his recent poorly designed ones with Nater, he ended up funding and publicising research which could never have generated useful data, and would inevitably serve to promote misleading prejudices about patients diagnosed with CFS. It's as if he was impressed by White and Wessely's work but didn't understand it well enough to copy it, never mind spot any problems with it. He should have never been in the position of power and authority he ended up in.

It was most likely not an accident that he was in so far over his head.

Cort August 6, 2012 at 11:23 am
Esther12

Where would he have been a good fit though?

To me, he seemed like someone who ended up over-promoted and out of his depth. Not only did he waste lots of time and money, but with studies like his recent poorly designed ones with Nater, he ended up funding and publicising research which could never have generated useful data, and would inevitably serve to promote misleading prejudices about patients diagnosed with CFS. It's as if he was impressed by White and Wessely's work but didn't understand it well enough to copy it, never mind spot any problems with it. He should have never been in the position of power and authority he ended up in.

You were probably not going to get the best and brightest in any federal effort for CFS….You could get very competent people or people who wanted to make their name but I would be surprised if any 'stars' would show up there.

richvank August 6, 2012 at 11:38 am

Hi, Cort.

Nicely written article. I think my most enduring memory of Bill is from the talk he gave at the CFS conference in Madison, WI in 2004. He was speaking about the origin of the CFS case definition, and he said something like, "There was a group of us sitting around in a smoke-filled room." And then he caught himself, and he said, "Well, we weren't really smoking, we were at the CDC." Overall the presentation gave the impression that there wasn't a great deal of scholarship or clinical observation that went into the process of developing the case definition. Big surprise to all of us, right?:)

One thing I always noticed about Bill was that for a bureaucrat, he was not very adept at choosing his words. Maybe he was just too honest, in a certain sense. In a way, this was refreshing, and I never wanted to miss one of his talks, but I got the impression that the audiences of ME/CFS patients were not very amused or reassured.

Best regards,

Rich

Tito August 6, 2012 at 11:53 am

In summary, a mediocre researcher with far too much power in his hands.

Cort August 6, 2012 at 11:54 am
richvank

Hi, Cort.

Nicely written article. I think my most enduring memory of Bill is from the talk he gave at the CFS conference in Madison, WI in 2004. He was speaking about the origin of the CFS case definition, and he said something like, "There was a group of us sitting around in a smoke-filled room." And then he caught himself, and he said, "Well, we weren't really smoking, we were at the CDC." Overall the presentation gave the impression that there wasn't a great deal of scholarship or clinical observation that went into the process of developing the case definition. Big surprise to all of us, right?:)

One thing I always noticed about Bill was that for a bureaucrat, he was not very adept at choosing his words. Maybe he was just too honest, in a certain sense. In a way, this was refreshing, and I never wanted to miss one of his talks, but I got the impression that the audiences of ME/CFS patients were not very amused or reassured.

Best regards,

Rich

Hey – he was a very evocative speaker – a pretty powerful personality…and he gave 'good presentations' – I always enjoyed those; unfortunately he didn't add much to the understanding of ME/CFS. I'm sure he was quite smart but I don't think he was an innovative researcher. I still can't imagine why the CDC never jumped on the repeat exercise studies and replicate them; what a huge boost that would have been…(then again, with their cohorts maybe it was better that they didn't)…

Cort August 6, 2012 at 11:59 am
Tito

In summary, a mediocre researcher with far too much power in his hands.

I really do think he was over his head. It wasn't an easy task for sure but when you think of the research findings that made a splash it's hard to think of anything other than the early life stress findings -which did make a splash but the wrong kind…

I think it was all set up by his insistence on random sampling…Here you had a vaguely defined illness and you start randomly sampling people? It just didn't make sense….he should have done it the other way around…since the definition is poor he should have gone to the places the real patients were – the ME/CFS physicians offices and studied them. Instead he studied these CFS-lite patients who drifted in and out of meeting the criteria…no wonder he couldn't find anything! No wonder he drifted into 'unwellness'….I think he made a fundamental mistake in the beginning and it went downhill from there.

Tito August 6, 2012 at 12:22 pm

I think it is the characteristics of mediocre people. They make mistakes (like anybody else) but instead of saying 'no, it is the wrong direction', no, they keep going dragging everybody else with them…

usedtobeperkytina August 6, 2012 at 1:42 pm

Don't know if it is all him, but the main obstacle to CDC progress was their isolation from clinicians who worked with the patients and other researchers. Let this be a lesson. Even if you disagree with someone, it does not work to make them the enemy and isolate them, if they are in power.

When he was removed from CFSAC, did that help to influence him? No.
Be careful what you ask for.

I don't agree with Unger on everything. I'm sure other researchers don't either. But, no progress will be made if everyone just stands across from each other throwing stones. Must be talking and doing research projects together in order to influence. CDC had no confidence in what everyone else was doing and in time, other researchers lost confidence in what CDC was doing.

Tina

Cort August 6, 2012 at 2:10 pm
usedtobeperkytina

Don't know if it is all him, but the main obstacle to CDC progress was their isolation from clinicians who worked with the patients and other researchers. Let this be a lesson. E

Tina

I agree…CFSAC and IACFS/ME seemed to be most upset by this in their 2010 call for Dr. Reeves ouster…and Dr. Reeves, with his small budget and big workload, really needed to collaborate to make a difference. The isolation from the messiness of the clinical environment may be a bit inbred in the CDC from what I read – they pride themselves on hard data – but with little hard data on ME/CFS treatment – the clinicians not the studies were where the CDC should have been looking….

justinreilly August 6, 2012 at 3:16 pm

Cort, I think youre whitewashing Reeves crimes a bit.

He was determined to wage war on patients and science from the beginning. When Prof. komaroffs landmark study was published in 1992, Reeves wrote an article in CDCs MMW journal that the subject of the study (the Tahoe outbreak) was "not CFS or any other clinical entity" and he told PrimeTime Live it was just "mass hysteria." And so on and so forth.

Spending that much time leading the federal effort on "CFS" there's no way he did not know that it was not simply tiredness. Putting out the Reeves criteria, which defines a cohort almost entirely of depression and idiopathic chronic fatigue, is just one example that shows he intentionally obfuscated and misdirected research and doctor and public education. less than three years ago, a warning was posted very prominently on the CDC CFS web page that patients should be suspicious of anyone claiming there is pathology or pathological processes in "CFS"

He knew exactly what he was doing. He was much worse than just a "poor fit." As the late internist Paul Lavenger, MD said in an interview in a New York newspaper, CDC "is winning the war on ["CFS"] patients."

Sing August 6, 2012 at 3:21 pm

Going back to "the smoke-filled room", he never got a strong definition or understanding of this illness. For that, he/the CDC, needed the most experienced clinicians for their advice and direction–they weren't there, as far as I have heard. It would have been different if a single bug could have been isolated right away as "the cause". Then the CDC could have been off and running on their research without so much input from the doctors who knew the illness. But without "the cause", he/the CDC, were and are dependent on the views of the most knowledgeable doctors–and at this point, the most accurate research that has already been done. I feel that the CDC will continue to compound the inadequacies of his leadership and legacy until they adopt the CCC or ICC, with reviews and updates as better and more research clarifies the picture.

justinreilly August 6, 2012 at 3:47 pm
usedtobeperkytina

Don't know if it is all him, but the main obstacle to CDC progress was their isolation from clinicians who worked with the patients and other researchers. Let this be a lesson. Even if you disagree with someone, it does not work to make them the enemy and isolate them, if they are in power.

When he was removed from CFSAC, did that help to influence him? No.
Be careful what you ask for.

I don't agree with Unger on everything. I'm sure other researchers don't either. But, no progress will be made if everyone just stands across from each other throwing stones. Must be talking and doing research projects together in order to influence. CDC had no confidence in what everyone else was doing and in time, other researchers lost confidence in what CDC was doing.

Tina

But Cheney and Peterson, for example, made huge efforts to try to educate and involve CDC and were met with derision, incompetence and intentional failure. CDC intentionally cut themselves off from the clinicians. Patients have put an incredible amount of effort into trying to guide CDC and they dont listen. CDCs mission is to crush us. We can only work so much with our enemies before it becomes destructive to us.

justinreilly August 6, 2012 at 3:53 pm

Reeves and Unger are not stupid. They came up with and continue to use the Reeves criteria precisely because it is meaningless and does not define ME. The Reeves criteria are so patently invalid and arbitrary, there can be no other conclusion.

justinreilly August 6, 2012 at 4:16 pm

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. Res Ipsa Loquitor, these things speak for themselves. It is implausible that this type of misinformation is caused merely by incompetence. This stuff was proven decades ago. They know this. They are intentionally deceptive. It is clear as day.

HowToEscape? August 7, 2012 at 1:16 am

Reeves was in charge when the "Dear Sirs, I am SICK" insult was posted at a CDC office, as seen by reporter Hilliary Johnson. It remained posted for more than one year, not a day or two.
I'm unsure of the policy here re links, but if one googles "CDC CFS Dear Sirs I Am Sick letter" enough hits will surface.

taniaaust1 August 7, 2012 at 3:26 am
Cort

. I still can't imagine why the CDC never jumped on the repeat exercise studies and replicate them; what a huge boost that would have been…(then again, with their cohorts maybe it was better that they didn't)…

Maybe they really never wanted to prove this illness real and that would of been an area which showed promise.

(I personally often wonder if there is an actual conspiratory to keep our illness hidden as much as possible. It certainly wouldnt surprise me from the actions of the CDC).

Jessica L. August 7, 2012 at 4:32 am

I must say I agree with Justins viewpoint on this one. I know anger does no good for us, but the removal of Reeves from the CDC was long overdue from all that I have read. It is a shame he passed away, but I think it was fitting that he was removed prior to his death. Was he a skapegoat? perhaps, but that being said he was part of the problem for us and his legacy and continuation of ignorance is something we pay for still….of course this is just my opinion,and I realize others may not agree. I guess its important to just try to look positively to the future, there are alot of great researchers out there like Peterson,Cheney,Komaroff and Klimas, Hyde ,Bell to name a few…we need to focus on their efforts and the new primer looks promising as an option to cdc toolkit [which is a joke]
….I think the conspriracy idea is disturbing but possibly holds some validity ,only as I hear there are many documents kept hidden from public view, Id like to know why is this? why the secrecy…? but here again, its probably not the best way to move forward as it just makes us look paranoid….I don't think we should put too much trust or faith in the cdc as long as it is continuing to misinform the public [ie "toolkit"=bad joke.] well, thats my opinion, foe what its worth. I've had this for 6 years, it is "not in our minds". as in we can wish it away, yeas, we can be proactive and adapt our whole life around "IT' to survive and improve but thats what it takes just to get by and it would be just great if the CDC would help at least with public understanding regarding the illness….oh,well…I will try to stay optimistic ,while not expecting to much and hope others can do the same. There is some promising research, thats where i hold my hope, and doing whatever I can to improve what I can.

currer August 7, 2012 at 7:16 am

I dont like to bang on about a single subject but – it all makes so much sense!!!!
Just suppose – the real motive to block research into ME is because it sometimes follows / is triggered by vaccines?
Now we know not all ME cases follow vaccination – but real research into immune dysfunction and ME might throw up some expensive/embarrasing facts best kept hidden in the interests of mass immunisation protection programmes that the CDC itself is responsible for, and has to fund and implement

What has the CDCs record been on Gulf War illness – another disease linked to experimental vaccines?
Autism? ? ?

Cort August 7, 2012 at 8:11 am
justinreilly

But Cheney and Peterson, for example, made huge efforts to try to educate and involve CDC and were met with derision, incompetence and intentional failure. CDC intentionally cut themselves off from the clinicians. Patients have put an incredible amount of effort into trying to guide CDC and they dont listen. CDCs mission is to crush us. We can only work so much with our enemies before it becomes destructive to us.

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…

Everybody has their viewpoints….the viral researchers, the cardiovascular, hormone, etc. researchers…they all think they have a piece of the puzzle and maybe they all do. I don't think trying to wrap some sort of conspiracy over a very difficult scientific puzzle is accurate..

Reeves had a viewpoint and a way of doing things…that was not very successful……he's certainly not alone in that in our history. It's really, really too bad he was in charge of the biggest CFS program on the planet. I think we would have been much further along if somebody else was in there; I think he was a failed researcher…I can't think of any real breakthroughs on his watch – he produced a terrible Toolkit…..he couldn't get along with alot of people very well….but a conspiracy to destroy CFS.. not at all…for me its much more simple than that; he just wasn't up to the task.

Cort August 7, 2012 at 8:33 am

We opened a CDC CFS Resource Center that includes links to article and blogs here. Suggestions are welcome.

Old Salt August 7, 2012 at 9:14 am
Cort

We opened a CDC CFS Resource Center that includes links to article and blogs here. Suggestions are welcome.

Old Salt August 7, 2012 at 9:20 am

If the cause of CFS is a common denominator in most all of the degenerative diseases, and is identified, it could/would eventually be devastating to the entire Medical Industry! Primarily, the drug manufacturing division. They are not stupid.

floydguy August 7, 2012 at 9:54 am
Cort

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…

Everybody has their viewpoints….the viral researchers, the cardiovascular, hormone, etc. researchers…they all think they have a piece of the puzzle and maybe they all do. I don't think trying to wrap some sort of conspiracy over a very difficult scientific puzzle is accurate..

Reeves had a viewpoint and a way of doing things…that was not very successful……he's certainly not alone in that in our history. It's really, really too bad he was in charge of the biggest CFS program on the planet. I think we would have been much further along if somebody else was in there; I think he was a failed researcher…I can't think of any real breakthroughs on his watch – he produced a terrible Toolkit…..he couldn't get along with alot of people very well….but a conspiracy to destroy CFS.. not at all…for me its much more simple than that; he just wasn't up to the task.

Unfortunately, the actions of the CDC don't line up with your speculation. The "Dear Sir" letter is a fact and underscores from day one the CDC position on the illness.

As mentioned before, Reeves was clearly over his head. A competent person who really wanted to make progress would have accomplished much more than Reeves did. IMO, it is total speculation that because one is a scientist they are trying to discover or make progress on what it is they are studying.

In politics, there are frequent references to "useful idiots". The history of the CDC program demonstrates that such people have quite likely been assigned to the CFS program. They can't comprehend nor care about issues above their pay grade. They are happy to do nothing while making a nice government salary with nice benefits.

Tito August 7, 2012 at 11:57 am
Cort

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.

If you are not a bully.
But if you are a bully, you choose option a) and you ridicule the victims.

I personally think that was the sort of individual he was. Once I was bullied. I read quite a lot to understand what it was, the purpose of it, etc. From what I read about this man, he seems to fit the description. I was like you Cort trying to see the rational aspect of the facts (this is the characteristics of a non-bully) and then I understood : a bully is a person who enjoys his victim's suffering and the power he has on his/her victim, and that joy is more powerful that any medal, acolade he can get as a mediocre person ('those who can, do; those who can't, bully').

MDL August 7, 2012 at 1:06 pm
Hi Cort–How are you? How hot is it in San Miguel?
You asked for suggestions. Perhaps you could join this thread with the one on the same subject about Dr. Reeves in General ME/CFS news. I'd also suggest you include the slides I posted in the CDC Resource Center. They give first-hand information about how this disease was approached by the CDC under Dr. Reeves.

caledonia August 7, 2012 at 2:29 pm

I don't necessarily believe in conspiracies, but there is evidence of collusion with disability insurance companies over the selection of the name "chronic fatigue sydrome" (see Osler's Web). Making the illness psychological means they can deny benefits or cut off benefits after two years. This saves them from having to pay benefits to the fastest growing category of illness, which usually lasts for a lifetime – a huge cost savings.

Assuming methylation is the root cause of ME/CFS, nobody could have figured this out before the human genome project was completed in 2003. Even now, it's a science which is in it's infancy, and this explanation seems to be involved, but is not a sure thing.

So this essentially leaves the CDC with no explanation. They are not going to admit they have no idea. They have their egos to protect, and they want to continue to have a job and milk it as long as they can. So they glom onto the nearest reasonable explanation – it's psychological. The psychological angle has been used for many physical diseases in the past, including MS and autism. This is a well-worn path. And, as explained above, for their own greedy reasons, the insurance companies, who apparently have influence over the CDC, would also like it to be known as psychological.

This is still no excuse for making fun of patients. Even mentally ill patients deserve to be treated with respect. I think "bully" is a good word for Reeves and why patients dislike him so much. His policies have also lead to patients being bullied by their physicians, friends and families.

Tito August 7, 2012 at 3:08 pm

As mentioned before, I think we need to clearly identify two things:
1. ME as an illness. Reeves was unable to help. He was incompetent. Okay.
2. The mental (sometimes physical) abuse we've had to endure for years, because of what he said. I won't speak for others, but for me, that constant abuse led to a decrease of my quality of life at least similar to the illness itself. I think it's Dr Bell who once said that the majority of his patients were suffering of post traumatic stress disorder. It is appalling and it was entirely avoidable. We would not be cured from ME but we would have a better life without Reeves & co. This, more than anything else, pisses me off (sorry for the language but I don't know how to phrase this differently).

justinreilly August 7, 2012 at 4:54 pm

   I agree with everyone save except Cort.

Cort,

I was a psych major at Brown. OK, I'll wait for the laughter to die down…
OK, so I'm not an expert, but I do know from trying psychological legal cases such as abuse and neglect and mental health incarceration cases that there are such things as bullies and antisocial/sociopathic people out there and not all of them are in prison where they should be. Most people who have anti-social personality disorder and are born into poor families wind up in prison. Most who are born into upper-middle class families manage to eke out a somewhat successful business or political career.

the DSM-IV "clinical" features of Antisocial Personality Disorder : one must at least three of these characteristics:

1. Failure to conform to social norms;
2. Deceitfulness, manipulativeness;
3. Impulsivity, failure to plan ahead;
4. Irritability, aggressiveness;
5. Reckless disregard for the safety of self or others;
6. Consistent irresponsibility;
7. Lack of remorse after having hurt, mistreated, or stolen from another person

Dr. Reeves easily meets these criteria.

Of course, as we all well know, such constructs as criteria for mental illness are not written in stone and are only, at best, approximations of the actual state of reality.

My point is, as all of us know from living our lives, that bullies exist. Most people are not bullies and most scientists have noble and Nobel motivations, but when you see someone (eg Dr. Reeves) bullying someone else (us) he is probably a bully. A bully may value and enjoy tormenting others more than he does receiving academic or professional honors. The schoolyard bully spends time attacking others rather than doing homework. And Dr. Reeves spent more time tormenting us than laboring in the lab to win the Nobel prize.

Bullies gravitate to jobs where they can bully people. We were and are sitting ducks because it is hard for us to fight back. I would speculate- and this part is of course speculation- that he relished how some of us, though no fault of our own, developed a kind of Helsinki syndrome where we tried to rationalize the actions of our abusers since we are to a great extent dependent on them (eg abusive parents or CDC whom we are dependent on for validation that we have a real disease and for their role in educating doctors and the public about our disease, as well as the research they do). We may not want to admit even to ourselves that we have been abused, because it is painful to do so. No one wants to feel like a victim. We also may not want to anger our abuses by speaking out about the abuse, if we are dependent on them because things may temporarily get worse. But pls remember that in the long run things get better.

Ok the above may sound patronizing. I think we can all relate to a feeling of frustration when family members or doctors have sat us down and tried to get us to have a positive attitude and not focus on the "possibility" or "false cognition" that we are physically sick. So, of course, I don't know what is going on inside someone else's head. My guesses about what is going on inside the heads of those who feel Reeves and CDC are just mediocre or incompetent are just that, guesses. Maybe I shouldn't conjecture about such things. Just know I am really am not trying to be rude to anyone who thinks this. Sorry if anyone is offended.

What I do know for sure is that reeves and especially Unger are bright people. Again it is implausible that they simply have a different innocently erroneous theory about what CFS is. It is very clear to anyone who has looked into it as long as they have that it is a specific neuroimmune disease, not hysteria, not any other psychological disorder, and not simply the low end of the spectrum of tiredness and functionality (which is the reeves definition). It is abundantly clear that Reeves, Unger and the Wessely school know exactly what they are doing.

Dreambirdie August 7, 2012 at 6:24 pm

Hey Justin–You are a man after my own heart. ;) I have a psychology background too, and was thinking along the same lines as you in regard to Reeves psychopathology. I would speculate that some of his bully-like behavior patterns could certainly be indicative of someone with a Cluster B personality disorder, as most abusers, bullies, and criminals have traits from those criteria…. especially the narcissists and sociopaths. And there is NO shortage of either types in the business world, the government, the medical profession, and in positions of power in general.

It's interesting that you suspect Reeves to be a sociopath. Maybe..? But because he seemed to have a great concern for his image (as evidenced by his actions to become a whistle blower in order to save his own skin), as well as a grandiose sense of self-importance and entitlement, I would think he could be a narcissist. NPD is certainly a possibility. A lack of empathy is a trait of both disorders, so who knows…? One thing's for sure, Reeves was seriously lacking in the ability to reflect on his behavior, to admit when he was wrong, or to show any remorse about the hideous effects his actions had on such a huge population of very sick people. That's common to many with PDs.

I also don't believe for a second that Reeves was incompetent. Just seriously flawed in character, and harmful to many because of it.

Narcissistic personality disorder (NPD)

  1. Has a grandiose sense of self-importance (e.g., exaggerates achievements and talents, expects to be recognized as superior without commensurate achievements)
  1. Is preoccupied with fantasies of unlimited success, power, brilliance, beauty, or ideal love
  2. Believes that he or she is "special" and unique and can only be understood by, or should associate with, other special or high-status people (or institutions)
  3. Requires excessive admiration
  4. Has a sense of entitlement, i.e., unreasonable expectations of especially favorable treatment or automatic compliance with his or her expectations
  5. Is interpersonally exploitative, i.e., takes advantage of others to achieve his or her own ends
  6. Lacks empathy: is unwilling to recognize or identify with the feelings and needs of others
  7. Is often envious of others or believes others are envious of him or her
  8. Shows arrogant, haughty behavior or attitudes.

justinreilly August 7, 2012 at 6:44 pm

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.

Why? one reason we know for sure is in order to cover up their past misfeasance and nonfeasance re ME. Once they had misappropriated the ME budget and lied about it to Congress the first year, they couldn't go back and admit that ME is a serious physical disease, because then they would get in trouble. Things then snowballed from there. As the misdeeds and lies mounte, the stakes have grown ever higher, making it more necessary to continue the deception.

There are other, additional plausible motivations. These include:
1) cruelty, sadism and similar mental problems of CDC investigators, (and the related, historically more adaptive, natural desire of society to marginalize the chronically ill in order to avoid spending a lot of resources on us)
2) sexism,
3) a desire to satisfy health insurers including the biggest one in the world, HHS (Medicare, Medicaid, VA benefits etc), the same department that houses CDC and NIH,
4) a possible desire to prevent some fact or facts coming to light, such as perhaps that vaccines may be involved, or that the government somehow otherwise contributed to the genesis or spread of the disease, etc, etc

There are probably others that we can identify.

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. She made the connection between HPV and cancer, I think. This makes me think that a lot of the impetus for CDCs method of operation re ME I s coming from above, that her career would be in substantial danger were she to do her job in a bona fide manner.

Esther12 August 7, 2012 at 6:54 pm

I've not been able t keep up with this thread, but I think that a lot of the work around personality disorders is pretty weak, and the idea of diagnosing someone one has never met is a prime example of how they can be used to lend a false aura of legitimacy to personal and political attacks.

I'm sure people could read this thread and then start claiming it indicates CFS patients have certain abnormal personalities or mental health problems… and it would be quackery.

(This sounds harsher than I mean to be. Sorry about that! As chatty speculation, I know this sort of thing can be fun… but it just reminds me of the sort of things I dislike about how others treat CFS patients.)

justinreilly August 7, 2012 at 8:08 pm

I don't know enough about the topic to assess the science or lack of it behind the constructs of personality disorders.

My point is we all know that
1) some people act from immoral motives.
2) William Reeves was one despite being a scientist working for the government.
It seems Cort does not agree. I find it bizarre at this point to have to argue about such obvious points.

Sing August 7, 2012 at 8:33 pm

One thing I wonder about is what the legal liabilities of the CDC or individuals therein, might be, were they to "admit" or reveal their malfeasance. My guess about them is that the glacial pace of their progress in a scientific direction, with regard to ME/CFS, has to do with this–how they don't want to create any clear distinctions or demarcations that anyone could draw which could have legal consequences between their policies and what becomes seen as valid. Am I being clear?

In other words, it isn't safe for them to say, "Oh sure, we've been wrong. Let's correct that and begin by changing the case definition and name immediately, then admit the validity of the research which has already been done, and pursue more right where it leaves off." No, they have to be obscure, indirect, tangential and pursue yet more irrelevant work–albeit in the realm of genetic minutiae and the like, rather than psychiatric ones, while creeping at an absolute snail's pace towards a different approach to our illness (if, indeed, they ever get there).That is my impression. I see them as involved in a a rear-guard, face-saving operation, which is about more than prestige, it may very much be about legal liability. Anybody who knows the applicable laws want to comment? Bring in the lawyers!

justinreilly August 7, 2012 at 10:02 pm

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").

justinreilly August 7, 2012 at 10:03 pm

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").

Wayne August 7, 2012 at 11:02 pm

I don't have a lot of energy tonight, but thought I would mention just a couple of things.

1) I've long thought that the CDC felt a MAJOR embarrassment when they were forced to admit back in the '80s that they were wrong on CEBV being the cause of CFS. So much that followed that was so detrimental to pwCFS resulted from that early CDC mistake, with a lot of it feeling to me like retribution.

2) If during Reeves' tenure at theCDC, he would have just gone in and sat in a closet doing nothing all day, we would all be far better off today. But I suspect Reeves was just a product of the CDC attitude toward us back then. And if he hadn't done what he did, the CDC would likely have found somebody else who would generally have done pretty much the same thing.

MishMash August 8, 2012 at 12:09 am

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.

Ember August 8, 2012 at 5:27 am
justinreilly

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?

Sing August 8, 2012 at 7:27 am
justinreilly

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.

Enid August 8, 2012 at 7:46 am

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

justinreilly August 8, 2012 at 2:58 pm
Ember
justinreilly

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?

justinreilly August 8, 2012 at 2:58 pm
Sing
justinreilly

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

justinreilly August 8, 2012 at 3:00 pm
MishMash

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 August 8, 2012 at 6:09 pm
justinreilly

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?”

jimells August 8, 2012 at 9:44 pm

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??

Ember August 8, 2012 at 11:04 pm


“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

Andrew August 9, 2012 at 12:25 am
Cort

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.

Sing August 9, 2012 at 7:05 am

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.

MishMash August 9, 2012 at 2:51 pm
jimells

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.

justinreilly August 9, 2012 at 3:29 pm
Ember
justinreilly

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.

GracieJ August 9, 2012 at 9:15 pm

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.

GracieJ August 9, 2012 at 9:45 pm

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.

CJB August 9, 2012 at 9:57 pm

Welcome back, GracieJ:hug:

alex3619 August 9, 2012 at 9:58 pm
Sing

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

Cort August 10, 2012 at 7:12 am
Sing

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.

Cort August 10, 2012 at 7:15 am

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…

Sasha August 10, 2012 at 7:29 am
Cort

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?

alex3619 August 10, 2012 at 8:06 am

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.:eek:

justinreilly August 10, 2012 at 1:38 pm
Sasha
Cort

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?

Sasha,
I think Cort was saying That it would be too early for the CFI Lipkin study which I believe is the one looking for novel pathogens in ME. The Lipkin HGRV/XMRV study is overdue, yes and they keep saying it'll be out in a few more weeks or months and then it gets delayed again.

justinreilly August 10, 2012 at 1:51 pm

Sasha,
I think Cort was saying That it would be too early for the CFI Lipkin study which I believe is the one looking for novel pathogens in ME. The Lipkin HGRV/XMRV study is overdue, yes and they keep saying it'll be out in a few more weeks or months and then it gets delayed again.

justinreilly August 10, 2012 at 2:04 pm
GracieJ

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.

Gracie,

I agree on all your points.

In particular, I wouldn't care about the name "CFS" if it didn't cause and compound so many problems, so I don't think it's nit picking. And I wouldn't care what they called it either if they were going to do bona fide science to figure it out, but they're not, that's their whole plan, not just an accident.

So to make them do bona fide science and to get some measure of relief from the every day abuse, changing the name (ME is the best candidate now) is critical, and it is something we can do right now ourselves at no cost.

What else can we do that takes no effort or money that will lead to better understanding, science and treatment?

justinreilly August 10, 2012 at 2:05 pm

Jimells, that last part was in response to you.

jimells August 10, 2012 at 3:57 pm
alex3619

I think modern psychobabble does the same – and that includes any theory about hysteria, which is a made-up unsubstantiated illness.

I still see physician intake forms that list "nervous breakdown" — what the H does that mean, anyway? Is that in the DSM?:mad:

alex3619 August 10, 2012 at 4:18 pm

Nervous breakdown is an old term – I am not sure what it really means either. Just more babble I think – this patient can't cope, lets call that a nervous breakdown. The question is, can't cope with what?

maverick76 August 10, 2012 at 7:13 pm

He probably died peacefully in his sleep.

richvank August 10, 2012 at 7:28 pm
Cort

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.

Hi, Cort.

I agree with you on this point.

For what it's worth, the GD-MCB hypothesis grew out of interactions in the internet groups with people who actually have ME/CFS, starting with detailed questionnaires about their histories to figure out what the causes are, and constantly coming back to their symptoms to see if these could be explained by the proposed biochemical model for the pathophysiology.

This effort resulted in proposing that there is a variety of root causes, but that there is a common core to the pathophysiology. The common core is what makes it an identifiable disorder, and the variety of causes matches what is found in this population.

The thing that pulls these two disparate-seeming concepts together is the body's known nonspecific response mechanisms to the whole variety of stressors (a la Hans Selye), and the fact that they all end up placing demands on glutathione and producing the same chronic vicious circle mechanism.

In a situation as amorphous as this one is, a "germ's-eye view" is more productive than an overflight.

Best regards,

Rich

Ember August 11, 2012 at 4:09 pm
Cort

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.

Dr. Reeves had another option, Cort, and so does Dr. Unger. Shortly after the Canadian government allowed a panel of experts to base their criteria on consensus clinical opinion, Dr. Reeves chose instead to operationalize the Fukuda definition. Recently Dr. Levine suggested that CFSAC should consider developing an international, consensus-based, clinical case definition. Dr. Rose added that starting with the CCC, which already separates ME from depression, would enable us to start getting some meaningful research.

For the CDC to insist on its “data driven” process is for the CDC to maintain its control, instead of allowing clinicians to bring their own data and expertise to bear. The CDC is asking clinicians to provide CFS data, but it is not allowing them to specify which case definition they've used. CFS is defined in the US by Reeves (2005) and Fukuda (1994). So if the CDC asks for 400 CFS patients, then that's likely what they'll get. Their data will be driven by their question. Subsequent to Dr. Fletcher's telling the CDC that Dr. Klimas uses the CCC to identify her patients, the CDC gave notice of a follow-on sole-source contract that apparently excludes her.

According to Dr. Unger, “The question being asked over and over is, how do the patients differ in people’s practices…. Is that why the findings in the laboratory are not always translatable?” To answer that question, the CDC plans to define the heterogeneous syndrome that it calls CFS by first gathering data on pre-existing domains and then utilizing unspecified instruments (subject to there being any good ones) to establish severity cut-offs. Reeves et al. (2005) similarly used specific cut-off values on the SF-36, MFI and Symptom Inventory to operationalize Fukuda and identified groups (CFS, ISF and Not Ill) by severity, using cluster analysis. Consistent with Dr. Unger's question, Reeves et al. (2005) purports to “help to clarify the extent to which patients from different referral clinics are similar (or dissimilar).”

Dr. Unger has embraced both Dr. Reeves' methodology and his goals. But she hasn't committed to any methodology for identifying subsets. Fukuda et al. (1994) states, “The central issue in chronic fatigue syndrome research is whether the chronic fatigue syndrome or any subset of it is a pathologically discrete entity, as opposed to a debilitating but nonspecific condition shared by many different entities.” Without committing to a test-retest protocol, how will Dr. Unger address this question?” She writes, “We are planning to collect standardized data on all the domains of illness included in the Canadian Consensus Criteria of CFS/ME (sic), the 1994 CFS definition and the newly proposed International ME definition.” Will Dr. Unger measure PENE and the associated neurological, immune and energy metabolism/transport symptom clusters of ME?

Fukuda et al. (1994) also states, “We support changing the name when more is known about the underlying pathophysiologic process or processes associated with the chronic fatigue syndrome and chronic fatigue.” The ICC incorporates what is known about the underlying pathophysiology of ME. Will Dr. Unger's definition do the same?

biophile August 11, 2012 at 9:36 pm

So it took the CDC about 25 years to start collecting standardized data on the clinical experiences of physicians and ME/CFS patients? Maybe we should take 25 years to pay our taxes.

Lisa Simpson September 9, 2012 at 9:45 am

No amount of paltry achievements can make up for the harm this man did. He purposefully and determinedly stymied meaningful research into what he undoubtedly knew was a serious disease. Millions of lives have been lost one way or another as a result of his actions. He achieved nothing of note in his long tenure, he helped no one. The harm he did is incalculable. That's the truth of it.

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