Friday, March 11, 2011

Reeves Strikes Again - "It's Your Uterus, Dearie!"

Just when you thought the nightmare on Clifton Rd (location of the CDC) was over, Bill Reeves rises from the crypt to once again assert "It's your uterus, dearie."

A 19th Century medical myth, "hysteria" or the case of the wandering womb, has once against metamorphosed into what passes for research in the pretzel-logic and sham research tradition into "CFS" perpetuated by Bill Reeves and Co.

Gynecological History in Chronic Fatigue Syndrome:
A Population-Based Case-Control Study
Roumiana S. Boneva, M.D., Ph.D.,1 Elizabeth M. Maloney, M.S., Dr.P.H.,1 Jin-Mann Lin, Ph.D.,1James F. Jones, M.D.,1 Friedrich Wieser, M.D.,2 Urs M. Nater, Ph.D.,1,3Christine M. Heim, Ph.D.,4 and William C. Reeves, M.D., M.Sc


In the January 2011 issue of "Women's Health" (what else? we all know CFS is a woman's disease, right? Let's just ignore the fact that Dr. David Bell's practice finds 50 % of his ME/CFS patients are male and many of them are or were children when they first became ill.) Reeves and the usual suspects like Jones, Heim and Nater once again get it backwards.

They note, or just try to infer, that women with a lot of gynecological problems are more likely to have "CFS". Therefore, those gynecological "abnormalities" must be causing the "CFS", right? It couldn't be that what causes "CFS", like retroviral and viral infections and maybe bacterial co-morbidities could be causing those gynecological "abnormalities", could it?

Reaching back into the good old days when not many had yet noticed that the CDC's Viral and Chronic Infectious Diseases Branch had nothing biomedical to say about ME/CFS, Reeves cites papers from as far back as 1986 to support his latest paper's thesis, but includes not a mention of the recent biomedical research that is so pertinent.


 
Reminds me of the map makers of long ago who believed that if you sailed far enough west you would fall off the edge of the Earth.

 
 He can't resist citing himself and his co-conspirators a few times as well. He's still hawking his psychological pseudo-theories in the footnotes:


44. Heim C, Wagner D, Maloney E, et al. Early adverse experience
and risk for chronic fatigue syndrome: Results from
a population-based study. Arch Gen Psychiatry 2006;63:
1258–1266.
45. Heim C, Nater UM, Maloney E, Boneva R, Jones JF, Reeves
WC. Childhood trauma and risk for chronic fatigue syndrome:
Association with neuroendocrine dysfunction. Arch
Gen Psychiatry 2009;66:72–80.

I'm sure it's comforting to the parents of children with ME/CFS to know that the CDC has determined they must have sexually abused their children and/or traumatized them in some way, to cause them to get the disease. Let's just ignore the family studies that show that children with ME/CFS often have parents, especially mothers, who either have ME/CFS or MS and the high rate of autism occurring in those same families. Let's just ignore all the viral, retroviral and infectious disease research that has accumulated over the last 25 years. Let's pretend that the 2009 Science paper never happened. Prescient as always, Bill predicted the CDC wouldn't find XMRV, and by golly, they didn't.

I'm still waiting for the CDC and/or Reeves, maybe with the sponsorship of CAA, to do a study of "CFS" in the boys sexually abused by Catholic priests over the decades. Seems like the perfect cohort for testing the sexual abuse hypothesis, doesn't it? Maybe Suzanne Vernon could help design the study.

There is nothing scientific about this whole paper, although its writers go to great length to give the impression that there is. They wedge the idea of mental illness into it by noting a third group of mainly depressives with "insufficient fatigue", into the narrative and in the illustrative figures, but then go on to say that this group was not considered in the "analysis". Then why mention it at all? I guess they just couldn't warp the science enough to find a way to include this group but tried to infer "guilt by association" somehow.

"Participants who met some but not all three criteria
for CFS constituted the ISF (insufficient fatigue), a separate group that is not
included in the current analysis."

Sort of like saying "In our study of pumpkins and gourds, we wanted to include some carrots, since they are orange, ("some, but not all the criteria"), but they didn't meet the criteria of being produced by a vine. We're including the attributes of the carrots just in case. But we didn't include those "participants" in our "analysis".

Their "cohort" was the notoriously unrepresentative Wichita cohort, obtained by the Publisher's Clearing House method: random digit dialing to households with telephone numbers in the current phone book database. They couldn't just contact the physicians who have patients with the disease, could they? No, those doctors are "contaminated", according to the CDC. This "contamination" is of the mental type, of course, in that they follow
Sir William Osler's recommendation that they listen to the patients in order to diagnose. He liked to say, "He who studies medicine without books sails an uncharted sea, but he who studies medicine without patients does not go to sea at all." His best-known saying was "Listen to your patient, he is telling you the diagnosis," which emphasises the importance of taking a good history.

Instead they take their standards from the disability insurance industry which has a policy of declaring that doctors who actually see the patients can't possibly know more about them than their own on-staff doctors who only go through the files, never seeing the patient, but finding that the patient couldn't possibly have the disease since there are no "objective" findings.

Then they try to turn the weakness in their cohort selection into a positive, using the CDC's trademark pretzel-logic:

"A major strength of the study is its design as a population-based case-control
study, avoiding referral biases inherent to studies of CFS from
referral clinics and the use of convenience controls."

Uhhhhh..., right! Random digit dialing must be better than "referral biases" (what?) from "referral clinics". In other words, we're not going to let any patients with a bona fide diagnosis from a clinician who knows how to diagnose ME/CFS into any of OUR studies! Likewise, those damned "convenience controls". Our random digit dialing is inherently better!

There's one thing the CDC has been very effective at: keeping the disease "mysterious" and making sure that none of the tests, biological markers or treatments ever get tried and tested. Keeping them forever "experimental" means that no insurance, including Medicare, has to do the testing that would prove the biomedical abnormalities present. With no "objective" evidence of disease, the disability and health insurance companies usually don't have to pay up, neither for disability nor for treatment. Those who have the money to outlast them can win. It took
Samuel Salomaa 8 years in court to win his disability claim against Life Insurance Company of America, despite having the support of CFS specialists, including Dr. Natelson. It took Clinton Merrick 13 years in the courts to win his CFS disability claim and punitive damages against the disability insurance companies that tried to rip him off. The infamous UnumProvident was a part of that case. Those who don't have the money to defend themselves are simply hung out to dry.

In addition to their bogus cohort, this study uses their bogus criteria/definition of the "syndrome". They say they used the "International Definition" and the "empirical definition". Both were invented to suit their purposes, with the input of the likes of Michael Sharpe from the psycho-quacks of UK. "International" actually means that the US and the UK got together and agreed on the best way to define the disease out of existence: by diluting it to include the depressed and the simply "fatigued".

Then they add a lot of boilerplate statistical mumbo jumbo, much ado signifying nothing. They make a big deal out of the "CFS cohort" having "significantly more" pregnancies that the controls. Actually the "CFS" women had 2.8 pregnancies each and the controls had 2. Why is having nearly 3 pregnancies "significantly more" than two? They go on to state that they didn't ask (it was all done with questionnaires) how many births, miscarriages, abortions or stillbirths any of these women had, essentially admitting that the number of pregnancies couldn't be interpreted to mean anything at all. Yet it was "significant".

None of their other "findings" were significant either, but they ended up concluding:

"In conclusion, the higher prevalence of gynecological conditions
and surgeries in women with CFS highlights the importance
of evaluating gynecological health in these patients." (Uhhhhh....wouldn't evaluating gynecological health be important for all women?)

Translation: "Give us some more money and we'll do some more bogus research" without ever seeing any patients who have the disease and without taking into consideration the
Emory study that found XMRV in the reproductive organs of the female and male monkeys. It's not like they never heard of Emory. That's where they've done a lot of their "mind-body" "research", using money from the Chronic Viral and Infectious Disease Branch to not investigate the chronic viral and infectious aspects of the disease.

A little CYA and pseudo-humility amongst the hubris:

"Our findings are derived from a population-based study in
which most patients with CFS reported gradual onset of
symptoms and may not apply to women with sudden onset or
postinfectious fatigue. Participants in this study were somewhat
older than in other studies.8
A different participation
rate between cases and controls may also have introduced
selection bias."


 

Translation: After all that random dialing, they could only find 36 women with "CFS" in Wichita!

And where at CDC are the studies on "postinfectious fatigue"? Or "sudden onset", for that matter? No, no, no. No viral or infectious diseases here, folks. Just pre- and post-menopausal women who were sexually abused as children and are stressed out about it. That and their raging hormones, or hormones that don't rage enough.

Where are the studies of men who have this disease? Children? Maybe not enough men and children were home when the random digit dialing took place, hmmm?


The frosting on this rancid cake:
"We acknowledge Elizabeth Unger, M.D., and Daisy Lee of
the CDC and Suzanne Vernon, Ph.D., formerly of the CDC,
for their contributions to the study protocol."

About a year ago, in a public forum, Cort Johnson told me Suzanne Vernon, currently the "scientific advisor" for CAA, and Bill Reeves "hate each other" in one of Cort's many defenses and apologies for behavior disloyal and counter to the interests of ME/CFS patients by the CAA. I don't remember if that was before or after his editorial saying the CDC wasn't up to anything nefarious - they honestly believe they're right. Right! I didn't believe it then and I don't believe it now. I used to think Vernon was a "Trojan horse" in the CAA but now I realize she and Kim McCleary are in tandem harness, pulling in the same direction, in perfect harmony.

Now aren't all you guys with this disease happy to know your gynecological history is probably what caused your disease? Aren't we all glad that Bill Reeves, no longer at CDC, is still producing such wonderful research with the limited funds available?

Please, Bill, sail west and fall off the edge of the Earth. Take Suzanne, Kim and Elizabeth with you.

15 comments:

  1. No apologies or embarrassment when the CFIDS Assoc. mentioned this study in their CFIDS Link email blast today.

    "GYNECOLOGIC PROBLEMS COMMON: Gynecological histories of 36 women with CFS were compared to 48 nonfatigued controls. Women with CFS had more gynecological conditions, including non-menstrual pelvic pain, endometriosis and amenorrhea. CFS patients had a higher mean number of pregnancies. 76% of the women with CFS reported hysterectomy compared to 55% of the healthy women. 56% of the women with CFS had one or both ovaries removed, while only 34% of healthy controls had this surgery. The CDC authors conclude that more research is needed to clarify the chronological and pathophysiologic relationships between these conditions and CFS. (Journal of Women's Health, Jan. 2011)"

    I'd say unbelievable, but unfortunately, I've come to expect this from the CFIDS Assoc. But really, this should have come with a warning, an explanation of why this was NOT good research, and an apology for ever having had anything to do with the CDC.

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  2. Bill Reeves and Suzanne Vernon--together again! I have to wonder if they ever really parted company. Perhaps Vernon's move from CDC to CAA was simply strategy. It is difficult to believe that the CFIDS Assn of America is still acting as though it speaks for M.E. sufferers. Obviously, it does not. Please read this petition and sign if you agree. Petition to disassociate from CFIDS Association of America as our advocacy representative http://www.change.org/petitions/petition-to-disassociate-from-cfids-association-of-america-as-our-advocacy-representative#signatures?opt_new=t

    Patricia Carter

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  3. Who knew that the USA and UK authorities,
    could get their health care, health insurance and disabilty help, to be so well synchronised?

    Amazing how neither countries authorities can find biomarkers in their cohorts. Astounding!

    Yep it's totally weird how these biomarkers only ever turn up in treating doctors cohorts.

    Well thats not true now is it, how was the UK XMRV study candidates picked, who's cohort were they?

    What about the patients that purchased XMRV tests privatly?

    So patients can find cohorts with XMRV,

    expert treating doctors can find XMRV in their cohort.

    But the USA and UK TAX PAYER funded "EXPERTS" cant.

    Odd that!


    Great blogg Thanks

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  4. Not in love with the author or the ridiculously small sample size, but ME and gyn problems are known. FMS and gyn probs known for years. Someone presented in Reno in '09 about it.

    I have a long history (almost 20 yrs) of gyn probs, heavy painful menses, endo, 12 cyst ruptures (no joke), ovary removed, pain continued, come to find out that psoas (sp?) muscle pain mimicks ovary pain. They saw the complex cysts and thought removing it would help the pain...NOT. Deep tissue massage is killer, but the only thing that helps my pelvic pain.

    Now my 21 yr old daughter previously diagnosed with FMS by Dr. E, has similar symptoms emerging...sometimes I just want to scream...PLEASE help us!

    Hopefully XMRV will end up being the culprit and I can get her treatment soon. I only have another 10 or 20 years to suffer, she is just a kid!

    Sorry for the rant, as you can see I'm mad as hell.

    Karen Ravitz

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  5. Maybe Reeves and Vernon should read Singh's patent closely. The pre-cancer and cancer revealed there should give them a big clue.

    Pre-Cancerous cervical and uterine dysplasia are common and many with CFS get this and therefore get preemptive hysterectomies. Ovarian cysts are common; if left alone, they burst with incredible pain...if left unattended, does XMRV make them into cancerous conditions? Who knows?

    This is blatant discrimination against women. Reeves is one sick puppy.

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  6. One up on you here- many of the patients in this study actually did not have CFS at the time the study took place by any definition, but rather had been 'previously diagnosed' with CFS in the years prior to the study.

    Between 1997-2000, CDC did an expensive random dialing thing in Wichita and identified a bunch of people who qualified for a diagnosis of CFS. They brought these people in to clinic, did a bunch of expensive tests on them and asked if they would like to participate in the hospital study that was to be done.

    Then in 2003, when it was time for the hospital study to be done, CDC called all these people up and when the people came in for the study, 2/3 of the individuals previously identified as CFS no longer met the definition.

    As CDC had already spent a truckload of money identifying these people and running exclusionary tests, they went ahead and included them in the study anyways. When the results were published CDC gave a brief mention in the first low-profile paper that the individuals had been 'previously diagnosed' as CFS, then in subsequent papers it got even more low-key with the CDC usually tucking this quite pertinant info away in some random table or something.

    They certainly have not made it clear that 2/3 or the 'CFS patients' in the studies using the Wichita dataset actually did not have CFS at the time the study took place. This is also the same dataset that the much-hyped Pharmacogenomics papers were based on, as well as being the dataset a substantial proportion of the CDC's publications in the past half a dozen years have used.

    A population-based study of the clinical course of chronic fatigue syndrome
    "This study considered CFS subjects who were identified during any year of the study and who had at least one follow-up visit."
    http://www.hqlo.com/content/1/1/49

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  7. Karen, I have some gynelogical problems of my own and I have no doubt they are related to my ME. The point I am making here is that the gyn problems do not cause ME/CFS as this excellent example of Alice-in-Wonderland-science attempts to direct us. If Reeves and Co had bothered to look at real scientific research, they would have noticed that whatever causes ME is also causing gyn problems.

    Oh wait! They probably DID look at that research and this is their smoke and mirrors approach to refuting it! Unger has done research on viral cause of cervical cancer. She knows better than to put her name on garbage "research" like this.

    And Suzanne...wasn't she modest not to mention in the CAA bulletin that she helped design the "protocol" (what?) for this study. Unger may have the coward's excuse that she still works in the good 'ole boy network. What's Vernon's excuse?

    John, I think Mary Schweitzer made all who are interested aware of how bogus the whole 'Wichita cohort' really is. I didn't include this info here because it was old news to me, but thanks for pointing it out again.

    Notice that in this "study" they say they didn't use their ISF (insufficient fatigue) group, but infer they may mock up some other "study" and use it there.

    At best, it's just another in a long history of diversion of taxpayer money away from finding the biomedical cause and treatment of ME. At worst, it really is a crime against humanity. Once again, who benefits? The disability insurance companies.

    Men, I think you should be contacting your elected representatives about this waste of money on something that is obviously not a 'woman's disease'.

    FWIW, the NIH has $3.9 BILLION on tap for research into "Women's Health";plus $1 million for vulvodynia;$27 million for uterine cancer;$106 million for ovarian cancer;$3 million for PID;$27 for HPV & cervical cancer VACCINES;$89 million for cervival cancer;$19 million for uterine fibroid tumors;$248 million for 'estrogen';

    And $329 million for prostate cancer.
    $521 million for "Mind and Body".
    $2.9 BILLION for 'Health Disparities" (creating them or...?);
    $2 BILLION for 'Emerging Infectious Diseases'

    And $15 million for TMJ - temporomandibular joint problems. Now we see the effectiveness of so many dentists sitting on the panels that vote on WPI research grant proposals. Buddies of Dennis Mangan?

    $5 million for 'chronic fatigue syndrome' vs. $521 million for 'mind and body'. I wonder who gets to vote on those research grants??? Maybe that guy who went to "Mental Health Surveillance" last year?

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  8. I interpeted the research findings as pointing to hormonal disfunction ... Which is valid based on some other research findings that whatever the cause, viral or not, reproductive organs are favored as host. this is more proof of biological cause.

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  9. Anon, "host" for what? Why isn't the CDC trying to find out the "what"? All of Reeves's "research" points to behavior of the patients as causal. This money should have been spent on finding the biomedical cause(s) of these hormonal dysfunctions, if there are any. Careful reading of the paper did not reveal anything new in that respect, but it did ignore men and children who have "CFS", while promoting the idea that it is a "woman's disease", as usual. Female hormones do not cause ME/CFS - not in women, men or children. On the other hand, a great deal of research has already indicated that viral and retroviral infections can affect the whole endocrine system.

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  10. @oerganix, I totally agree, ME is causing the gyn problems. I personally think that XMRV fits.

    Oh and the Wichita cohort, oy vey, you should see Dr. E talk about it! Yup don't know of any fans...lol.

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  11. ""We acknowledge Elizabeth Unger, M.D., and Daisy Lee of the CDC and Suzanne Vernon, Ph.D., formerly of the CDC, for their contributions to the study protocol."

    After reading this, I think I need a good stiff candy bar.

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  12. Yes, Flo, chocolate is a medicinal herb in my mind. Especially in a liqueur.

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  13. Really nice post, I find this very useful. I think that it is quite important to know about this. Thanks for sharing.

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  14. Bill Reeves's definition of a CFS patient:
    A woman abused as a child with a personality disorder and a bad uterus.

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  15. LOL, Caroline!
    Actually, that's the "Reeves Disease" definition.

    ReplyDelete