State of the Knowledge Workshop ME/CFS Research April 7-8, 2011

State of the Knowledge Workshop
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Research
April 7-8, 2011

Building 31, Conference Room 6C10
National Institutes of Health, Bethesda, MD  20892

This NIH workshop will bring together subject experts who will discuss multiple aspects of ME/CFS, including epidemiology, etiology, pathophysiology, diagnosis and treatment.  The workshop panelists will identify gaps in knowledge and opportunities for new biomedical research. 

Workshop Agenda, Online Registration, and Visitor/Hotel Information.  This workshop is open to the public. Please note that attendance is limited, and we encourage registration for those attending in person. For those who are unable to attend, the workshop will be available via NIH VideoCasting (http://videocast.nih.gov/) both during and after the event. 

Individuals with disabilities who need reasonable accommodation should indicate your needs on the registration or contact Infinity Conference Group at (703) 925-9455 ext. 0 or by e-mail at icg@infinityconferences.com. Sign Language Interpreters can be provided if requested.

This workshop is sponsored by the NIH Office of Research on Women’s Health in collaboration with the Trans-NIH ME/CFS Research Working Group.

Preliminary Agenda  DAY 1 – THURSDAY, APRIL 7  8:00 – 8:05 WELCOMING  8:05 – 8:15 OPENING  8:15 – 9:15 PLENARY TALKS  9:15 – 10:45 INFECTIOUS DISEASES  10:45 – 11:00 Morning Break  11:00 – 12:15 SYSTEMS BIOLOGY  12:15 – 1:00 Lunch (On your own)  1:00 – 2:00 IMMUNOLOGY  2:00 – 3:15 NEUROLOGY  3:15 – 3:30 Afternoon Break  3:30 – 5:00 EXERCISE PHYSIOLOGY AND ENERGY METABOLISM  DAY 2 – FRIDAY, APRIL 8  8:00 – 8:15 Reconvene  8:15 – 10:20 DIAGNOSIS AND BIOMARKERS  10:20 – 10:35 Morning Break  10:35 – 12:30 TREATMENT  12:30 – 1:30 Lunch (On your own)  1:30 – 2:30 COMMUNICATION OUTREACH  2:30 – 2:45 Afternoon Break  2:45 – 4:45 SUMMARY AND CONCLUSIONS  4:45 – 5:00 CLOSING

Sponsored by The Office of Research on Women's Health, National Institutes of Health (NIH) In collaboration with The Trans-NIH ME/CFS Research Working Group

If you have any questions, call (703) 925-9455 ext. 0 or e-mail icg@infinityconferences.com **************************************************************************** Online registration needs to be done by March 30. https://www.infinityconferences.com/InfiniBase/Registration/Reg.aspx?ptguid=bf17bb1b-7df8-4ba5-b7a0-ba91edfbd56c Let us hope that the session called EXERCISE PHYSIOLOGY AND ENERGY METABOLISM will have real biomedical information, not the psychobabble from the UnumProvident controlled psychopuppets from UK and the CDC. More info: http://orwh.od.nih.gov/CSF%202011/newsEvents.htm

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 StudyRoumiana 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.