Members of the Parents of Children With Lyme Support Network join National Capital Lyme and other organizations in supporting speakers representing the patient population by continuing to participate in the IOM Workshop. Though the process may be flawed, we believe it is in our best interest to listen, learn and share at this workshop in hopes of advancing dialogue and collaborative effort, even if it is just by a single step.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"speakers representing the patient population"
Who would that be? The only one assigned for that position resigned.
posted
Tincup, You seem to have access to the list of speakers/presenters at the IOM conference...can you supply a link? Thanks.
Posts: 688 | From Florida | Registered: Aug 2001
| IP: Logged |
In response to first question: We realize that Pam is there to present based on her journalistic investigations; but we all know her findings. We consider her representative of our experiences. Also, we trust her judgement. If she feels there is merit to following through with her presentation, we believe she merits our support via our presence physically or webcast. There are other presenters who likely will be sharing information that supports our experiences. I base that on researching their work. Also, I am sure that some of the doctors in the trenches will be there. Though I haven't asked directly, I am pretty sure my own daughter's doc will be there - the office called to reschedule an appointment made for one of the workshop days.
In response to second question: About 6 years ago, four mothers met through lymenet, realized that we lived in the same area and decided to meet for lunch. We have been meeting ever since, and the numbers joining us have continued to grow over the years, all by word of mouth. We now have two lunches monthly - each strategically located to allow people on the extreme ends of our geographic area to attend at least one. Additionally, we have a sub group of parents who have lyme themselves who have begun meeting monthly. They face an even more complicated journey and have found the support they provide each other for this specific situation to be profoundly beneficial.
Over the years, however, the email communication has become our most active component. We are NOT an activist group, we are truly a support and resource sharing group. Rather than a leader, we have a facilitator who manages the communications and lunch reservations. Sometimes someone will suggest inviting a professional (doctor, school psychologist, nutritionist) to speak. If there is enough interest, we follow through. We are very loosely organized.
I would say that the most valuable aspect of this group is sharing experiences in support therapies, school issues, doctor status updates (who is taking new patients, etc.). For this reason, this group works best if it is regional. I would encourage others to develop a group in their area. I will always be grateful to lymenet for giving us the opportunity to connect.
Levity,
You can find the workshop agenda by going to IOM's website: www.iom.edu/ Type "lyme disease" in their search box. Click on the first link that pops up. That will take you to the Workshop page. If you scroll to the bottom, you can click on the "Agenda" link on the left.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I am there to speak on the patient experience --but will draw from my journalism to talk about more than myself. Just because I have not pulled out does not mean that I do not support the groups who have. To the contrary, I stand in solidarity with them: However, I am an individual, not an advocacy organization and my burden of responsibility and perspective and mission is different. I remain very hopeful that the acts of those who have dropped out AND those who remain in dialog with IOM will, together, IN AGGREGATE, make a change in this workshop SO that we have a more balanced presentation of the science. Pam Weintraub
posted
Pam, that is a balanced perspective. It seems to me that taking two approaches to this should not be perceived as divisive. Anything accomplished by those who are withdrawing benefits me. Anything that might be accomplished by those participating benefits those who are boycotting. I like to think that we are covering all the bases.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
| IP: Logged |
posted
Pam, that is a balanced perspective. It seems to me that taking two approaches to this should not be perceived as divisive. Anything accomplished by those who are withdrawing benefits me. Anything that might be accomplished by those participating benefits those who are boycotting. I like to think that we are covering all the bases.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Spoken like true Knights. Thanks.
-------------------- 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
| IP: Logged |
Pam, thank you for letting us know what your perspective is on the proceedings--it's good to know that you are not feeling abandoned, as had been suggested, and it helps to diffuse some of the friction that has arisen around differing viewpoints.
You have done so much for Lyme patients with your excellently researched book--we all owe you a debt of gratitude. Cure Unknown is one of the most powerful tools that we have to lift the veil of misinformation that surrounds Lyme disease.
After looking at the agenda and thinking that some of the names looked familiar, I looked back at Cure Unknown and found that you had interviewed and written about several of the researchers who will be presenting at the workshop.
Hopefully, these are scientists who will attest to the persistence of Bb and its craftiness in disabling its victims and their immune responses. This is heartening--and may add some balance to the bias of Wormser and others.
Posts: 688 | From Florida | Registered: Aug 2001
| IP: Logged |
Please feel free to PM me with names and contact information of those who may be interested in joining the POCL Network. I, or one of the other moms will get in touch with them. Will that work?
lymeout
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
| IP: Logged |
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