Some of you have been following the IOM proceedings and know the background of the workshop. But I thought I would provide some background for those who do not know what it is, or how it came about, or why it matters. If that sounds like something you’d like to know, a backgrounder follows. . . .
I thought I might share with the community why I believe the IOM process is too one sided to further patient interests. I am disheartened by the fact that the Lyme community is facing another stacked panel (4 of 6=IDSA) and most of the speakers who have key presentations are IDSA physicians. As far as patients are concerned, the IDSA does not know how to run a clean review process. It only knows how to root for the team. The IDSA’s review panel on Lyme disease did little more than whitewash its controversial guidelines. More after the jump. . .
TFL, LDA, and CALDA, announced today that they are withdrawing from the IOM Lyme Workshop due to bias and the lack of balance in scientific viewpoints scheduled to be presented at the conference. The three groups had been commissioned to write a paper for the proceedings and Diane Blanchard of Time for Lyme had been slated to speak. Four of the six IOM panel members responsible for selecting speakers, topics and timeslots are members of IDSA, which is known to have a strong bias against the diagnosis and treatment of Lyme disease. The resulting agenda reflects this bias with key speaking positions granted to Dr. Wormser, who chaired the IDSA Lyme guidelines panel, and Dr. Aguero-Rosenfeld, who until recently worked with Dr. Wormser at NYMC. No comparable time slots were awarded to provide the opposing viewpoint, and no ILADS physicians are scheduled to speak at the conference. Details and Press Release follow. . .
Dr. Liegner has been in the trenches a long time treating Lyme disease. He was working side by side in the early days with government scientists when they were curious and truly interested in learning something about this disease, before dogma took the place of science. Yesterday, he told the IOM how it is for Lyme patients, treating physicians, and researchers in this environment of fear, suppression, intimidation, indifference, and silence: "Physicians who have cared for persons with chronic Lyme disease have faced harassment at a minimum and for some, their careers have been ruined. Researchers who have seriously dedicated themselves to the scientific study of chronic Lyme disease in humans and/or animals have often found themselves attacked or marginalized. To persist in their researches would have resulted in virtual career suicide and some have been forced, by exigencies of survival, to leave the field." He also points out how the IOM feeds into this by allowing Dr. Wormser to speak unopposed and not permitting ILADS physicians an opportunity to speak: “The process of planning the meeting has been, as far as I can tell, quite opaque and it is notable that clinicians who actually treat persons with chronic Lyme disease have been nowhere to be found on either the planning committee or the panel. Neither is any clinician afforded adequate time to present, in a formal way, an opposing position to what must be viewed as the “keynote” speech by Dr. Wormser. Dr. Wormser’s extreme view on the existence of the entity of chronic Lyme disease needs no repeating but does need rebuttal.” His full letter follows the leap. . .
The IOM has slotted Afton Hassett to speak about “Potential Bio-Marker Applications for Lyme Disease: Aligning Multiple Symptoms with Biological Measures”. You might think he was a microbiologist or, or, or ? Well, it turns out that she is a Psy.D. What is a Psy.D.? It is a newish graduate degree in psychology. It does not focus on research or statistics, it focuses on the “soft” side of psychology, generally therapy (which is not a bad thing, but why should it weigh in on biology?) What does a therapist have to say about biomarkers specifically and why was she chosen over say, someone who actually knows about biomarkers, like Dr. Ben Luft? I shudder to think that this is about the psycholigization of an illness—namely turning an illness caused by a bacteria into a psychiatric illness, as in “don’t worry, it’s all in your head”. Afton Hassett, Psy.D., hails from the Chronic Pain & Fatigue Research Center, Department of Anesthesiology at the University of Michigan Medical School. Her view in a nutshell? Is that patients are nuts. How refreshing. She publishes with Dr. Lenny Sigal, a highly vocal anti-chronic Lyme light seeker. How reassuring. Some of her quotes follow after the jump. . .
Today, ILADS sent a letter to the IOM expressing its concerns about the lack of balance in the panel and the speaker list for the Lyme State of the Science conference. Not surprisingly, it was concerned primarily about the exclusion of ILADS physicians from presenting at the conference and with the large roles handed to Dr. Wormer, chair of the IDSA Lyme guidelines panel, and Dr. Aguera-Rosenfeld, who until recently worked at NYMC with him, are both known to have biased views regarding the diagnosis and treatment of Lyme disease. Exclusionary conduct on the part of the IDSA has prevented the type of scientific debate that is essential to understanding where the science in Lyme disease rests. ILADS took issue with the large roles handed to the IDSA in the diagnosis and treatment issues at the conference, stating: “There is a significant disconnect between IDSA and the community of physicians who treat Lyme disease. There is also an urgent need for transparency in recognizing the limitations of the existing Lyme research. The bulk of the research on Lyme treatment has been controlled by IDSA researchers. Their research is based on sample populations that do not reflect those seen in clinical practice.” Lyme treatment research has been plagued by sample sizes that are too small to measure clinically relevant treatment effects and that do not reflect the types of patients seen in clinical practice. The link to the ILADS letter follows the jump. . .
Finally, the Institute of Medicine (IOM) came out with its agenda for their “State of the Science Hearing”after much hemming and hawing. Patient groups (including CALDA) who asked for transparency in the study process received a mere “no comment” response. Well, we never got transparency, and we only got the agenda after it was finalized and released to the public. So, here’s the score: its 3 for 3 in the ‘Final Inning’ in favor of the IDSA.
Four of the 6 IOM panel members are IDSA members.
10 of the 14 physician speakers were authors on the IDSA guidelines or the copycat guidelines issued by members of the IDSA panel or members of the IDSA.
Zero ILADS physicians have been chosen to speak. Let me repeat: ZERO, zip, nada, not a single ILADS physician was chosen to speak!
Dr. Gary Wormser, poster boy of the Connecticut IDSA antitrust investigation, is kicking off the game.
Oh, there’s window dressing to be sure. A personalized tour of the Agenda after the great leap forward. . .
What are we to make of the recently launched journal “Ticks and Tick-Borne Diseases” that includes on its editorial board five members of the IDSA Lyme guidelines panel? Dr. Wormser, who chaired the IDSA Lyme guidelines panel, is an associate editor of the journal. Do you think that they might have a bias or might exclude others points of view? If so, is this peer review or is it censorship?
Some people don’t think that evidence-based medicine is about evidence. They think it is about power and ownership. I was a bit stunned to read Cerar et al (coauthor Dr. Wormser) take on the author of a meta-analysis on Lyme disease by boldly declaring that her conclusion was “not evidence based.” Kind of makes you wonder whether evidence is in the eye of the beholder and whether Cerar and Wormser have authority to settle scientific debates by proclamation of what constitutes “evidence”. Much as a scornful Humpty Dumpty did in Alice in Wonderland: "When I use a word. . ., 'it means just what I choose it to mean – neither more nor less." "The question is," said Alice, "whether you can make words mean so many different things." Does scientific debate really boil down to WHO says and how LOUDLY they say it? Should it? More after the jump.
Does history repeat itself? Did you know that the initial CDC definition of AIDS did not include women? And, because it did not include them, women were not included in research and they were denied disability payments. So much for disease definitions just being about “surveillance”. It took them 4 years to change the definition and there were a lot of government hearings. Turns out the hearings were just for “show and tell”. Not real hearings intended to accomplish real things. Kind of reminds me of the IOM hearings going on right now. Here’s an interview from Maxine Wolfe in 2004 at ACT UP describing the scene. Let me know if you see any parallels here. I sure hope I don’t.
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