IOM Lyme Disease Workshop

Hi all!
I just received this in an email today & thought maybe this could reach more people that need to know. Maybe a few of us here could go?? Just a thought. ~Trav

P.S. IOM = Institute of Medicine


From: [email protected]
To: [email protected]
Sent: Friday, September 24, 2010 3:13:21 AM
Subject: Urgent Message to the Lyme Community

Please Distribute to all:
September 23, 2010



Dear Lyme Community:



As you know, some Lyme advocates have chosen to pull out of the IOM Lyme Disease workshop 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



Tracie Schissel

Chairman, Minnesota Lyme Fighter’s Advocacy

Vice President, Lyme Disease United Coalition



Tina J. Garcia

Founder, Lyme Education Awareness Program



Eva Haughie

President, Empire State Lyme Disease Association

Hi Needshelp,
That would be great if you could go!! I'm in a state where these kinds of things are never held. Being how you are both patient & scientist, I would think that you have the potential to comes away with quite a bit of info!

I didn't see how much it costs anywhere, but if you click to register (lower left hand corner of opening page under "upcoming events"), it'll take you to another page with some contact info - both email & phone #'s.

BW- I opened the 'Agenda' pdf file & it looks to be an interesting two days!!!

If you do make it there, maybe you could let us know what kind of an impression you got, or what - if anything - you learned???

Thank you in advance!!!!

Trav

WOW! I just tried to read my last post & one would think I was drunk & typing that!!! Although I do have to admit that it would only take three beers to get me to that point any more!!! - giggle!!

I fully understand, Simela!! I couldn't make that kind of a trip either!! It would take me about three or four weeks to recover after making a trip like that - literally.

But I wanted to put this up in case someone could travel to this & give them the opportunity to go,

Way cool!!! I hope you are able to enjoy yourself while you are there!!

As far the big toll it takes on you - traveling is hard on a healthy body, so it's no wonder we can feel it soo much worse.

I have almost no memory, could you remind me -are you in treatment?

I am so happy for you, needshelp! Please do post a new topic when you get a chance about your experience. I am also waiting for the Oct Conference. Do you have a link where we can see the meeting on line?

Thanks!

Needshelp, thank you for the update for my brain!!! I am sorry that you have been in treatment for so long & have had to deal with those darned insurance people that have no clue what they are actually denying us of.

I would suggest that you rest up as best as possible before any event you go to, plan out the food you will eat & eat as healthy as you can with several small meals each day - they say that we should eat 4 or even 5 times a day for regular people. Also, do you detox? You should be sure to take what you need to continue to detox while away, as I believe the added stress of traveling will definitely affect your body's ability to detox.

I hope that this helps in some way!

I look forward to your impressions of what went on there!!!
Trav

Trav,
I do detoxing with chlorella (sp?) although probably not as much as I should.

Missy Joy,
Yeah I tend to agree with you. I think I'll wait until I return to start the Flagyl. Thanks for your input.

Trav,

What kind of detox do you recommend? 

Traveler,

I found your comments on the unfortunate decision to boycott the conference to be right on target. It does not make sense to boycott - our voices will not be heard.

I attended the Phil conference Oct 2 & 3 and I am sorry I did not approach Pat Smith and voice my opinion. I think she should re-evaluate and get as much representation as possible at the conference. Is any one willing to approach her and have a relationship with her?

Again, I cannot express enough dismay at the leadership decision to do this.

bcaring

I just got an email saying the DC metro will be doing repairs on Monday and that it will cause major delays getting to the conference location. Unfortunately, this may deter people from going. Sounds like it is going to be a real mess.

There is indeed a lack of organization and leadership on the part of Lyme advocates. In my opinion, pro-Lyme folks need to stop focusing our efforts on fighting the IDSA and instead focus on science and research. I'm not sure the fight with the IDSA can be won (too much money and corruption is at play). Regardless, of who is right and who is wrong, clearly people with Lyme can suffer chronic and severe medical problems. We should push for research on BOTH chronic infection AND auto-immune problems. At the end of the day, I don't care who is right. I just want to be WELL again. Just my 2 cents.

One last thought, we also need to push for better understanding of our illness. Most medical professions (including sciencists and infectious disease MDs) think Lyme is rare and just causes minor muscle and joint aches. This needs to change. We need folks to realize that this is a horrific illness that affects a large number of people.