As you know, some Lyme advocates have chosen to pull out of the IOM Lyme Disease workshop http://www.iom.edu/Activities/Disease/TickBorne.aspx. They are legitimately concerned that the agenda is heavily biased against the patients' interest. We respect their concerns and their decision to pull out of the workshop. However, upon careful consideration, we have decided to participate in the IOM workshop to represent the Lyme patient's perspective and show support for our presenters. While we have our own reservations, we are working hard to improve the agenda.
Here are some facts and thoughts to consider in making your own decision:
1)The IOM Lyme workshop is not a forum to debate whose science is right or wrong. It is, rather, an assessment of the state of the science as presented from all points of view, for the purpose of determining the science and research still needed. This workshop is not designed to draw conclusions, but to determine where future research needs to go.
2)If Lyme patients and Lyme doctors fail to participate, the only perspective presented will be that of the IDSA. If our Lyme doctors and advocates don't participate, the committee can't include them in the record and it will appear in the report as if we don't exist or care.
3)The IOM committee will accept comments for the record up to 3 or 4 days after the workshop. If you don't know what was said at the workshop, you cannot draw intelligent comments.
4)Clinicians will have a microphone reserved solely for their use, with extra time allocated to their questions or comments which will be included in the final report. Lyme doctor participation is critical or the IDSA clinicians will be the only ones at the microphone and on record.
5)A Congressman worked hard for the appropriation to fund this project. Abandoning this workshop is abandoning him, and will compromise his future ability to argue successfully for Lyme patients in Congress. This Representative needs Lyme community support at this workshop. We cannot ``burn our Congressional bridges'' with the very people who are critical to our cause.
6)When you withdraw from the Washington process, you won't be asked back again. Each time this happens, we lose our ability to be taken seriously. History shows that progress is made when we work within the system, not when we abandon it. Admittedly, it is by nature, a long and arduous process.
Bottom line: the workshop will proceed with or without our community; without representation we concede to the IDSA. We can't let that happen! If the situation warrants it, there will be time to write a minority report.
Please attend this workshop and explain your views on the gaps in science and the research you think is needed. For example, the gaps in diagnosis that caused your disease to go unrecognized; the lack of uniformity in approaches of the states; the problem of underreporting; the unreliability of testing and the other issues you believe should be addressed by the science.
Thank you,
Monte L. Skall Executive Director, the National Capital Lyme & Tick-Borne Disease Association
Linda Lobes President, Michigan Lyme Disease Association
Lisa Torrey President, National Tick-Borne Disease Advocates
Judith Weeg President, Lyme Disease United Coalition Affiliates: Lyme Disease Association of Iowa Minnesota Lymefighter's Advocacy Nebraska LDUC Ohio LDUC South Dakota LDUC Nevada LDUC Indiana LDUC Kansas Lymefighters, Inc. Oklahoma LDUC Washington (State) LDUC North Dakota LDUC In the Lyme Light, MN LDUC Wright County Minnesota LDUC Georgia LDUC Annondale, MN LDUC
posted
We are not trying to create a rift in the community, but to enlighten people as to what will happen if we don't participate in the IOM workshop. The information we are providing will hopefully help you make an informed decision.
I do agree, it is a tough call on which way to go with this, but I personally feel at this point we have no choice but to participate if we don't want the IDSA to dominate the workshop and the final report to only reflect their view points.
I respect every patients and advocates right to make their own decision in this matter.
Hugs Linda
Posts: 107 | From Michigan | Registered: Nov 2004
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You have voiced all of the concerns I had when I read about them pulling out! I thought it was just my Lyme brain, once again, not being able to put 2+2 together. I mean surely they know what they are doing.
I am frightened at the prospect!
Posts: 471 | From NJ | Registered: May 2009
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You can protest the process and still participate. As this press release points out, there are still opportunities to get our voices into the record.
Pam Weintraub - totally withdrawing leaves her in that workshop alone. Do we really want to do that to her?
Though it is not a balanced list of presenters, we do have others on there who will be presenting the views we hold. Take a look at the agenda on the IOM website. You will recognize a few of them. But there are others you may not recognize that I am confident will have some information to support us.
How will the media perceive a total withdrawal/boycott? Will it improve their attitude toward us or will it give them more ammunition to portray us negatively as we were in the Forbes article a couple of years ago?
To use a poor analogy - If we pull out, we are not just giving the hijackers the keys to the car, we are giving them the title as well.
Just think about this from different angles, then do what feels right for you. That is what each of us has to do.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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posted
"Please attend this workshop and explain your views" ---- I don't think any of the topics you have listed are actually being addressed by the panel of speakers --
difficulty in getting a diagnosis, under reporting etc etc
I previously expressed the same concerns -- that the agenda is so one-sided already -- but even if the groups attended do you really think 30 minutes or whatever allocated to our side will really offset the 2 days giving the other (IDSA point of view)?
Also item #2 -- I know I read somewhere that the report would be edited -- if that is really true then I have serious doubts that dissenting viewpoints will make it into the final report.
As to clinicians being allowed to speak -- first I have heard of that.
But what about microbiologists at the few labs that are actually working on this problem -- hubby has 2 unidentified organisms -- one a bacteria and one a protozoa that noone has been able to gene sequence.
There is so much wrong with the agenda and list of presenters I just don't see how it can be fixed at this point.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I certainly can see why this a divisive issue and why there is a struggle about it. Every group that has ever come together against a vested, powerful interest has had their disagreements.
I want to point out one thing, though--you said:
A Congressman worked hard for the appropriation to fund this project. Abandoning this workshop is abandoning him, and will compromise his future ability to argue successfully for Lyme patients in Congress. This Representative needs Lyme community support at this workshop. We cannot ``burn our Congressional bridges'' with the very people who are critical to our cause.
It seems here has been a major breakdown in the congressional process--the organizers (NIH/IOM) are not being required to carry out the true intent of the task at hand. Does anyone in Congress have authority or oversight to look at what is being done in their name? If the Congressman did, I would think that the process would look very different at this point. The report was very specific in what it demanded in terms of giving a fair hearing to all points of view and that is not what has come about.
Once our side has participated it is like giving tacit support to the process--there will be no protest later. It will just sound like sour-grapes...'you had your say and this is what the committee has agreed upon'...
Some have hope that the IOM will do the right thing, even though the process has been severely flawed all along. We hoped that would be the case with the IDSA guidelines and look how far that got us. Ultimately, we are endorsing the process if we participate in it.
Posts: 688 | From Florida | Registered: Aug 2001
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I truly understand both sides...
So what ever they decide to do is alright by me.
Personally I think they too will leave it up to
Congress to decide anything just like they leave
everything that has anything with shaking any
trees. They dumped SV 40 like a hot potato. But then so has everyone else...
Congress knows what we fight.
The CDC knows what we fight.
The IDSA knows what we fight.
Who don't know what we fight? The people. The people must decide.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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You have voiced all of the concerns I had when I read about them pulling out! I thought it was just my Lyme brain, once again, not being able to put 2+2 together.
I agree.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Levity (and Bea)- you're exactly right.
Sad reality is though, there always seem to be a few Lyme groups willing to participate in these farces, and thus to freely provide a fig leaf of legitimacy.
I duly note that the same reasoning is always provided-- that to not participate in event X or lobbying of X or meeting with X is to deprive the Lyme community of a voice, and that it is always better to work within the process, etc etc etc.
I also duly note that those voicing this opinion are always fervently sure that their opinions are the soul of reason and reasonability, and that their hearts are always in the right place.
What always baffles me, though, is how anyone or any group active in politics of any kind, much less those who have been active in the guerilla warfare that is Lyme politics, can not draw elemental distinctions about policy and process.
Any political or policy process that has been thoroughly corrupted (taken over, co-opted, etc etc) ahead of time, by whomever, for whatever reason is be definition one which is rigged.
A rigged process will spit out a predetermined outcome or conclusion, period.
There is no value and nothing to be gained in participating in such a process. The act of refusing to be used as cover by participating carries far more weight.
As it is, sigh, as usual the message the IDSA and their ilk get to feed on and promulgate is that the Lyme community is divided...
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
Dilly - you got it 100% right. Why can't our activists learn from the past? And see what it is coming down the tracks before it hits them?
Posts: 8430 | From Not available | Registered: Oct 2000
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