Monday, October 13, 2008

Statement From National Capitol Lyme Disease Assoc.

Achieving Progress; One View

Now that all the chatter has died down about our Congressional Briefing, it is incumbent on us to address the many issues that were raised about it. I would first like to thank all the people who supported our project both financially and in spirit. You helped us reach our goal of having every congressional office receive a copy of Andy's DVD & Pam's book. We talked to people from all over the country and made many new friendships as well as cementing old ones. Your encouragement and faith in what we were trying to achieve was a great inspiration to us. The great success was not about us but about you and your support. Our critics were few, but their voices were loud.

It is tempting to be angry about the mischaracterization s and attempts to discredit our goals, as well as the efforts to stop the event itself. Despite all of that, we were pleased to report a packed house and very favorable reaction from the members and staff that attended. We have sent out over 85 thank you letters to members of Congress and their staffs who attended. We choose to not publicly address our critics who demand harmony and cooperation, at the same time depicting good faith efforts as creating discord and chaos merely because they were not done in their name or under their umbrella. The NatCapLyme organized congressional briefing was designed to include all. The idea throughout was to make it a grassroots project that represented the efforts and plans of many, without making any person or group the exclusive central focus.

From the first, help and support was sought from all support groups and their members from across the country, with a sense of common purpose and joint effort. To make one group more prominent than another would have detracted from that goal. Everyone had to be treated equal or the project would have failed. To succeed, our legislators had to perceive that our Lyme community was united. Pat Smith and LDA were invited to participate. In fact, all groups and their group leaders were invited to participate. Each was contacted by email and a follow-up telephone call. Not all responded. There has been criticism of the strategy, timing, choice of content, method of invitation, and funding of the congressional briefing. We welcome the discourse and diversity of opinion. However, we are content to let the results stand for themselves, even when it is claimed by some that the success of the event was really because of their separate activities. That does not matter. What does matter is the outcome, and we're happy to have everyone who wants to take credit, do so.

It is important to clarify that NatCapLyme is not a part of or associated with either LDA or LDF and neither it nor our members are working to promote either's agenda. We have worked with and supported both organizations as well as independent groups and ILADS over the years. Rather, NatCapLyme has been and is an independent organization; we take pride in being open and accessible to all and in trusting our own judgment and making our own decisions. We believe that strength comes from considering all opinions and approaches, just as does our Supreme Court when it held that the truth will emerge from the widest possible dissemination of information from diverse and antagonistic sources. We do not believe that a national organization is imperative in achieving unity. Unity will come from respect and acknowledgement for each other and validating our mutual efforts.

There are many groups and individuals who have worked tirelessly for this cause. Diversity of opinion leads to dialogue and dialogue leads to change. For far too long this community has lived in fear, anger and distrust. It would be gratifying to see these behaviors disappear in favor of open dialogue and mutual affirmation that will encourage the type of change we sorely need in our community for forward progress. If you have any questions about this message or would like additional information, please feel free to call me at 703-821-8833.

Monte Skall National Capital Lyme & Tick-Borne Disease Association************ **


  1. How MANY different LYme-support groups are there? Could you list them for us?

    What is the major problem between these groups. That is not clear.


  2. That's a good question. There are a couple of main groups that are larger. The Lyme Disease Association(LDA) is probably the largest and works very hard to recruit other groups to be under their umbrella. Contracts are signed, with rules to follow. Myself and others feel that this restricts diversity of goals, and actions. Most of us feel that monopolies can be inherently dangerous.

    The Lyme Disease Foundation was the original Lyme activism group but has been a bit quieter in recent times.

    CALDA is the California Lyme Disease Association and is one of the affiliates of the LDA.

    There are many affiliates of the LDA, here in the US and some abroad.

    The National Capitol Lyme Disease Assoc. is an independant group from the LDA. They have had problems with the LDA interfering and trying to stop their Congressional Briefing. This is what the original post is about.

    Other smaller groups are LEAP Arizona, a Michegan group,The Greater Hartford Lyme Disease Support and Action Group, some in Florida and then independant activists who are not affiliated with any groups but are there to offer any help they can give to those groups they feel are actually making a difference and have the patient's best interests at heart.

    Those in the smaller groups are usually smaller because they are don't have govt backing...and actually , many don't want govt backing as that would stifle and slant activism and research efforts

    The main concern is that the biggest groups with govt funding may be diverting activism efforts to areas which help to support the agendas of the corporations (which are now intermeshed with our govt). The LDA is affiliated with The Department of Energy and the Military. What does this mean and how does it affect their activism efforts?

  3. I don't understand. What agenda do corporations have that Lyme activists resist?

    What goals do each of the Lyme groups have in common?

  4. Supposedly there are conflicts of interest which Attorney General Blumenthal has found in his investigations. Some of them include patents on test kits and vaccines.

    It would be nice if all the different lyme groups would all have the same basic goals in common....but this does not seem to be the case. All the facts are not yet laid on the table so it is difficult to say in public what a certain group's main mission really is. Hopefully whatever is in the best interests of the patients, will eventually come to be.