LYMEPOLICYWONK: Lyme Patient Groups Withdraw from IOM Lyme Workshop
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. . .
The failure to present viewpoints that oppose those of Wormser and Aguero-Rosenfeld, the failure to allow clinicians who treat the most patients with Lyme disease to present, and the lack of balance of time and viewpoints from the medical perspective means the patient perspective will not be heard.
The groups believe that the IOM workshop, as presently structured, cannot achieve an objective review of the state of the science in Lyme disease or present the broad diversity of scientific viewpoints as required by the Appropriations language. This bias undermines the integrity and the credibility of the IOM proceedings and will necessarily be reflected in any report summarizing the proceedings. The groups withdrew with great reluctance but felt that continuing to participate in a biased process would harm Lyme patients throughout the country.
Contact: Melissa Chefec, MCPR Public Relations, 203-968-6625
For Immediate Release
NIH Does Not Comply with Congressional Appropriations Language
Lyme Patient Groups Compelled to Withdraw from Scientific Meeting September 20, 2010 –
In a move designed to protest the Institute of Medicine’s upcoming Lyme disease workshop, three of the nation’s largest and most influential Lyme groups have pulled out of the process. After much deliberation, speaker Diane Blanchard, co-president of the Time for Lyme (TFL- CT) has withdrawn from the panel. The national Lyme Disease Association (LDA- NJ) and the California Lyme Disease Association (CALDA), along with TFL, will not participate in the workshop and their IOM commissioned scientific paper will not be submitted.
The scientific workshop was promoted by the Institute of Medicine (IOM) to be a conference about the state of the science regarding Lyme and tick-borne diseases. Despite the groups request for transparency and a balance of scientific viewpoints, as delineated in Congressional Appropriations language, neither the hearing panel nor the speakers selected by the IOM satisfy the Congressional intent or objectives. The IOM’s mission was to provide “independent, objective and non-partisan” advice to policy makers, yet the majority of the participants sitting on its Lyme disease panel belong to the Infectious Diseases Society of America (IDSA), a medical society with a known bias. Many key speaker roles were given to physicians who are IDSA members and supporters, a number of whom were involved with the IDSA’s controversial guidelines for Lyme. IDSA’s Lyme guideline development process was investigated by the Connecticut Attorney General which resulted in exposing the guideline panel as being riddled with undisclosed conflicts of interest.
In spite of the recommendations to NIH by Congress, the conference opens with perhaps the most polarizing figure in the chronic Lyme debate– Dr. Gary Wormser of Westchester Medical Center — who chaired the IDSA Lyme guideline panel and whose highly controversial biased views are well known. There are no scheduled speakers with opposing viewpoints of similar scientific weight to balance his presentation about the research gaps in Lyme disease. Many state-of-the-art scientific researchers and experienced clinicians have been relegated by the IOM and NIH to simply spectator positions.
The patient-oriented Lyme groups believe that this amount of bias undermines the integrity of the scientific workshop and that its final report will reflect this lack of objectivity. “We believe the entire process has the potential to cause additional harm to patients. After much deliberation our only recourse is to withdraw our support for this seriously flawed process. From the inception, TFL, LDA and CALDA have communicated our concerns, which were ignored. We remain hopeful that NIH/IOM will revamp the program to comply with the Congressional language which was responsible for initiating the workshop,” the groups said in a joint statement.
Time for Lyme, www.timeforlyme.org, the national Lyme Disease Association, www.LymeDiseaseAssocation.org, and California Lyme Disease Association, www.lymedisease.org, are non-profit organizations that were founded by individuals who had personal experience with Lyme disease, in order to address the lack of research, education and support services available for this emerging infection.
Contacts for Media:
Time for Lyme, Diane Blanchard, Co-President, 203-461-3417
The California Lyme Disease Association, Lorraine Johnson, Chief Executive Officer, 310-365-3233
Lyme Disease Association, Pat Smith, President, (732) 938-4834
You can contact Lorraine Johnson, JD, MBA at firstname.lastname@example.org.
- September 20, 2010 at 10:46 pm
CONTEMP OF CONGRESS?????????????
- September 21, 2010 at 3:31 am
IOM told me on the native american phone call that they would act in "good faith" when I addressed this at the beginning of comments from those on conference call! hog wash!
Lying thru their teeth; proof again!
THANKS FOR PROTESTING!
We need a huge rally before Nov. ELECTIONS!
Are we going to take this lying down, I'm NOT!
bettyg, iowa lyme activist … disgusted at the injustices going on above! PU
- September 21, 2010 at 5:52 am
So how can this situation be addressed at the original Congressional Appropriations level?
- September 21, 2010 at 11:31 am
The decision to withdraw from the IOM must have been a painful one. As it seems clear that the atmosphere and agenda are just more of the same, then I'm sure other Lyme patients (like me) support that decision.
- September 21, 2010 at 3:10 pm
I commend your honorable decision to forgo this insult to humanity and science. We the people are behind you.
To right the unrightable wrong
To love pure and chaste from afar
To try when your arms are too weary
To reach the unreachable star
This our Impossible Dream.
- September 21, 2010 at 5:23 pm
I am relatively new to the whole debate, so there may be things going on that I don't know about, but I don't quite get how this type of protest helps us at all. The IDSA wants to keep our advocates quiet and on the fringes, so the advocates protest by shutting up and walking away? I don't get how this helps…
- September 22, 2010 at 7:01 am
I have attached my letter that I will be sending to my congressional representatives to show my support for the decision by CALDA, the LDA and Time for Lyme to withdraw from the IOM work-shop. Those who are interested in using my letter should insert their own personal reason for writing. In writing my letter, I borrowed liberally from the CALDA, LDA and Time for Lyme press release on this issue.
As a mother of a thirteen-year-old girl with multiple tick-borne infections, I support the decision of the Lyme Disease Association, the California Lyme Disease Association, and Time for Lyme to withdraw from the Institute of Medicine conference focused on the state of the science for Lyme disease and tick-borne illness research. Patient interests will not be served by the biased panel of speakers that have been chosen for the workshop.
The Institute of Medicine meeting came out of a mandate from congress for the NIH to oversee a balanced, transparent process for developing a workshop to discuss “a broad spectrum of scientific views” leading to new directions for Lyme disease and tick-borne illness research. The NIH delegated responsibility for the conference to the Institute of Medicine. Under IOM direction, the majority of panel members belong to the Infectious Disease Society of America, a medical society with a known bias. Many key speaker roles were given to physicians who are known IDSA members and supporters. There are no scheduled speakers with opposing views that were allotted any significant speaking slots. Many state-of-the-art scientific researchers and experienced clinicians have been relegated by the IOM and NIH to simply spectator positions. The patient-oriented Lyme groups believe that this amount of bias undermines the integrity of the scientific workshop and that its final report will reflect this lack of objectivity.
The balanced and open process mandated by Congress has been corrupted and the federal dollars allocated for this hearing are being misused. Oversight is needed to insure that the NIH/IOM comply with the original Congressional mandate.
- September 22, 2010 at 9:32 pm
I agree with Laura. All groups must stand strong in the face of this adversity, not back down. Say what you need to say, get it on the record, as Tom Petty said "Don't Back Down, Stand Your Ground."
This latest little IDSA trick just proves to me once and for all that something is seriously, fundamentally wrong at the CDC/NIH etc. – all the more reason to stand up and fight it. I'm a CALDA member, please stand up for me and fight this corruption. I will write to my elected reps as well. Thank you for this website and everything you do.
- September 23, 2010 at 11:42 am
great letter, thanks for sharing it. I especially like your last paragraph which makes an excellent point that we should all pass on to our legislators.
- September 23, 2010 at 11:11 pm
Your letter is excellent Karla! Thanks for sharing that. I have written to my representative and Senators too.
I agree with Laura that the groups should not back out. Instead, you should change what you say and give the testimony of the ILADS physicians, researchers, etc according them credit of course. Don't back down and stand up to this IDSA's latest demonstration of arrogance, defiance and corruption. Use the opportunity to speak up, and say what needs to be said.
- September 25, 2010 at 8:27 am
I hope so much that these three organizations change their mind (now that their point has been made) and rejoin the conference. We need to take every opportunity possible to present our side, and the more educated and informed people we have representing our interests, the better we look. If the IOM will not give us equal time, we need to take the time they do give us. We need to get our rebuttals onto the record. Though our point of view is not yet the mainstream, the more often it is presented, in as many forums as possible, the more it will be registered on the record as well as in the public mind. We need this to happen, and withdrawing and refusing to speak does not do anything to help get our point across. And isn't our real goal here getting our point across, anywhere possible?
- September 26, 2010 at 11:23 pm
The bias/corruption of IOM (IDSA) panel is in violation(s) of (ILAD's)liberty rights under the lst (freedom of speech), 4th (due process), 5th (taking of life,liberty and property),6th (self-incrimination), 11th (prohibition of state actors from immunity of discrimination) and the 14th (equal opportunity and protection)Amendments of the US Constitution – with an 'intentional' "flagrant" pattern of practice of unlawful- Discrimination/victimization(injury) and Abusive Harassment (humiliation, intimidation, coercion and manipulation) – due to money and power of pharmaceutical, insurance and stockholders' pocketbooks deemed more important to protect the public's health, safety and welfare – a known growing epidemic of
Lyme and co-infections affecting families, miscarried, stillborn and innocent children some suffering autistic spectrum disorders w/out voices w/ "blatant" Contempt of (evidence-based medicine) and Congressional Appropriation of federal funds.
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