posted
The National Capital Lyme and Tick-Borne Disease Association
NEWS
FOR IMMEDIATE RELEASE: Contact: Monte Skall (703) 821 8833 [email protected]
Washington, DC - Thursday, April 21, 2011. The Institute of Medicine (IOM) released their report on April 20, 2011, on ``The Critical Needs and Gaps in Understanding Prevention, Amelioration and Resolution of Lyme and Other Tick-Borne Diseases.'' The report confirmed what Lyme patients have known for years - that Lyme disease is a serious illness, and significant gaps remain in our understanding of the disease.
At the request of the National Institute of Allergy and Infectious Diseases (NIAID), the IOM was entrusted to plan and hold a two-day workshop to assess the state of the science of Lyme and other tick-borne diseases. A committee was formed, which provided a forum for broad scientific and public input, and produced a summary report on the critical needs and gaps in research.
Although we share the concern with many in the Lyme community that treatment was not included in this workshop, we are pleased that other critical themes were addressed. The National Capital Lyme Disease Association (NatCapLyme) would like to thank the IOM for completing this arduous task with integrity within the guidelines they were charged to respect.
Pamela Weintraub's powerful presentation at the IOM workshop last October made a notable impression on the IOM Committee. In its preface, the IOM Committee wrote: ``Pamela Weintraub spoke eloquently about her personal experience and her family's challenges with Lyme Disease.'' Echoing Pamela Weintraub's call for research, the IOM report states that ``a new environment of trust and a better environment for more constructive dialogue [is required] to help focus research needs and achieve better outcomes.''
We commend the IOM for so effectively establishing the convergence of science with real-life situations and highlighting both the need for more scientific knowledge and the serious societal challenges that need to be addressed.
Importantly, the IOM Committee noted that ``the burden of disease is a growing concern.'' The Committee recognized that ``tick-borne diseases (TBDs) represent some of the world's most rapidly expanding arthropod-borne infectious diseases, yet significant gaps remain in our understanding and knowledge about them.'' Some of the themes discussed in the IOM report suggesting greater emphasis and more research are:
- A national integrated research plan for advancing the science on tick-borne diseases;
- A long-term study of Lyme disease and other TBD patients; Educational programs for the public;
- The current status of diagnostic tests and biomarkers for tick-borne diseases;
- Biorepositories for tick-borne diseases; Biological understanding of persistent symptoms;
- The impact of coinfection in severity of human TBDs;
- The role of immune response to tick-borne infection and its effect on bacterial load and disease manifestations;
- Animal models that explore mechanisms of pathogen persistence following antibiotic treatment.
A diverse group of scientists and physicians with expertise in tick-borne infections discussed a breadth of scientific topics. Some profound insights shared by several of these presenters include:
- ``Science is not belief, but the will to find out'' (Benjamin J. Luft, M.D.)
- ``Everyone is studying the early stage of this infection, no one is studying the persistent phase of this infection.'' (Stephen Barthold, D.V.M., Ph.D.)
- ``You do not require an antibody response to develop this disease'' (Janis J.Weis, Ph.D.) ``Treat the patient, not the test'' (Juan Olano, M.D.)
-``[For the child] long-term effects last 50-70 years'' (Richard F. Jacobs, M.D.)
- ``...the poor understanding of the true incidence and geographical distribution...I don't think we have a clue'' (Richard F. Jacobs, M.D.)
- ``How can you say, `I've treated you for four weeks and therefore you no longer have Lyme disease.' The fact is, we don't know!'' (Sam T. Donta, M.D.)
- ``Under-powered studies which purport to demonstrate universal efficacy need to be viewed with circumspection'' (Sam T. Donta, M.D.)
- ``All that shouting drowns out all the complexity and the nuance and the work that needs to be done'' (Pamela Weintraub, senior editor at Discover magazine, and author of Cure Unknown: Inside the Lyme Epidemic)
In addition to thanking all the presenters, we want to express our gratitude to the Lyme community for supporting our effort to see this workshop through. The thousands of Lyme patients who responded to our surveys and allowed their stories to be shared in ``The Human Dimension of Lyme and Other Tick-Borne Diseases: The Patient's Perspective,'' the NatCapLyme paper commissioned by the IOM, provided a valuable contribution to the IOM workshop and report. http://www.iom.edu/Reports/2011/Critical-Needs-and-Gaps-in-Understanding-Prevention-Amelioration-and-Resolution-of-Lyme-and-Other-Tick-Borne-Diseases.aspx (p. A-67)
The IOM workshop brings us another step closer to improving the lives of Lyme patients and their families who have been profoundly impacted by tick-borne infections, and who have been caught in the crossfire of opposing views for such a long time. The next logical step is collaboration between all stake holders to fill in the gaps uncovered in this workshop concerning diagnosis, addressing the topic of treatment, and the need for a consistency of language in discussing Lyme disease. ``Medical progress should no longer be impeded by the polarizing controversy that has characterized Lyme disease research in the past. The dialogue must continue and encourage mutually respectful collaboration across scientific disciplines and among researchers, clinicians and patients, even when view points differ, if we are to make progress.'' (Gregg Skall, Womble Carlyle Sandridge & Rice, PLLC)
We implore Congress to fund and the IOM to convene a second workshop that would address research needs for effective treatment for persistent Lyme disease.
posted
As each new strain of Lyme and new strains of co-infections evolve, the 1990 studies by Dattwyler, Barbour, and Steere become more and more irrelevent. Pam understands this...she is on top of the science, and refuses to sulk in the sandbox as so many want to do.
If the science in our camp was finished, then we would all respond to treatment and we would be cured. Behind the scenes, there are people in the so called "anti-chronic Lyme group" that recognized we are persistently ill Lyme patients. This may be the beginning for change.
Everyone moaned and worried that the IOM report would be biased and judgmental. When they adhered to the guidelines set forth, and did not make recommendations, now I hear complaints that they should have made recommendations, and they complained about the whole process. All the IOM did was report what was presented....period! The science from the anti-chronic Lyme group" validated we are persistently ill, that testing falls short, that we need to be using the same terminology, and that evolving new strains add more complexity to our illness. They showed we have serious gaps in the science, and we need more funding.
Of course, if you think the past 20 years of our stance has moved us forward and produced results, then keep critisizing those of us who chose to stay involved in the workshop.
posted
For the record, THIS is the unedited statement I gave at IOM, word-for-word. Any critique of my statement ought to refer to what I actually said, not to external interpretation or commentary by others, including IOM. They are of course allowed their own commentary, but you should distinguish between me and others:
posted
I think you are lumping all the agencies with what happened at the IOM. I watched the workshop for two days, went over presentations in the days after it was finished, and I have looked over the report. There was no stance at that workshop that Lyme patients need to "stop complaining".
Researchers/presenters recognized at the workshop we have people who are seriously ill with persistent symptoms, testing falls short, we need to be using the same terminology, they want collaboration, and we need more funding to fill in the gaps. I urge everyone to take the time to read the report.
I have decided I am going to take the high road with what took place. I refuse to stay in the past sulking that the workshop did not hand me everything I wanted to hear. I am not interested in "it's my way or the highway" mindset. I am looking to the future for a second workshop....I want to know what gaps were filled and let's look at more effective treatments for persistent Lyme disease.
Posts: 134 | Registered: Dec 2002
| IP: Logged |
posted
Thanks Onbam, There are some typos in the IOM release, but it is just a draft --for instance, where I said the mainstream insists "treatment response is guaranteed," the IOM left out the word response --making it seem like I said "treatment is guaranteed," a much different meaning. These are just unintentional typos in a draft statement, and there are other areas like this as well. I feel confident that they will be more than happy to make these corrections --and that their interest is just in getting it right.
I assume that is why they put this out as a draft, for this kind of input at the last minute. But for the record, I was very careful to read my response exactly as linked here, because every single word was thought out, and these words were so important that I did not want to miss or misstate even one of them. Best, Pam
posted
It was clear at the workshop that Pam was held in high esteem, and her words struck a chord that reverberated throughout the day and a half remaining the the process.
That Lonnie King chose to quote her in the summary was very significant in establishing a tone and attitude in moving forward. I think Pam was universally embraced as a hub - the one person with the best vantage point for seeing and understanding all aspects of this very complex issue. Her integrity, knowledge and experience have carved a unique and important role for her in advancing resolution of this issue. We are so lucky that she has devoted so much of her valuable time and energy to this point.
So, thank you Pam. I hope you will continue to participate; for I think you have the ear of all the players.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
| IP: Logged |
posted
It was clear at the workshop that Pam was held in high esteem, and her words struck a chord that reverberated throughout the day and a half remaining the the process.
That Lonnie King chose to quote her in the summary was very significant in establishing a tone and attitude in moving forward. I think Pam was universally embraced as a hub - the one person with the best vantage point for seeing and understanding all aspects of this very complex issue. Her integrity, knowledge and experience have carved a unique and important role for her in advancing resolution of this issue. We are so lucky that she has devoted so much of her valuable time and energy to this point.
So, thank you Pam. I hope you will continue to participate; for I think you have the ear of all the players.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"There was no stance at that workshop that Lyme patients need to "stop complaining".
Actually, you might want to check Dumler's (IDSA author from Hopkins) transcripts. He went on about it for a good while at one of the workshops. I believe there was another mention too, but can't remember who off the top of my head.
53:39- Dumler
"I'll be very frank about this and those people who know me know I've been quite intimidated by some of the causative responses directed toward me as a result of my participation in the IDSA guidelines preparation..."
"But what I'm not willing to do is to participate when I'm when my my when my reputation is besmirched and I'm am accused of having conflicts of interest that don't exist, I'm accused of being in the back pocket of insurance companies and things like that- those are not conducive to me being able to function along side patient advocates and other clinicians.
"I think many people out there that I've talked with... but I don't want to get into a position where I'm feeling continously intimidated .... but it is an overall feeling that sometimes we get out of this... I would prefer not to have that."
"See if we can't actually figure out how to fix those things together. I really do believe an ACTG -like clinical group would really facilitate our coming together it would bring a critical mass of patients together to try to solve these issues together, but the intimidation, the negative comments have really got to stop."
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic