posted
I watched a portion of the IOM session and was thrilled to see at least 5 Lyme-literate docs taking turns going to the microphone to speak during Q&A/comment sessions. The Q&A/comment sessions I watched were dominated by Lyme docs and Lyme patients. I'm glad that many decided to participate because it was very obvious that there is a huge population of patients that do not fit inside the IDSA box. The panel would have to be blind, deaf, and dumb to dismiss all of these speakers as irrelevant in their findings. Not saying that's not still a possibility, but... I definitely think it was good for the panel to hear from our side.
Posts: 57 | From VA | Registered: Feb 2010
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Watch Dr. Jacob's presentation (after Dr. Fallon). Though he does not focus on borrelia, he delivered a powerful message on the burden of chronic illness in children. He states that they are not little adults - their central nervous system is different, their immune system is still developing and, "their long-term effects are going to last 50 to 70 years, not 10 or 20!
He also had a recommendation that deserves exploring and perhaps pursuing - bio-informatics and bio-repository systems. He says that there is a National Children's Study, with centers strategically located throughout the US that follows pregnant women from pregnancy for 20 years to study various health issues. There is a section in place for infectious disease in which he recommends we promote tick-borne disease to be included. I don't remember if the bio-repository is part of this program or if he is recommending it separately, but this idea was also mentioned by Dr. Luft. Both of these should at least be explored.
One thing I learned from hearing these presenters who are obviously passionate about their work ( with a couple of exceptions), is that we can't limit our focus to just lyme/borrelia. We already know that there is co-infection impact here. I think that this is pretty universally accepted across the disciplines. That provides common ground on which to build.
Watch the webcasts with all of the tick-borne infections in mind and you will find threads of cohesiveness in this body of information that was presented.
I know the report is important, but I think it is secondary to the seeds that were planted, the networking that occurred and the universal acceptance that we are dealing with a most complex medical mystery that demands collaborative study.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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posted
I think you need to keep in mind that the motives of people who do medical research may not include helping sick people. There was an interview with a researcher a while back who had made some breakthrough and a person helped by this was included in the interview. The researcher said he just worked on it because it was an interesting problem. And, my guess is, he could get funding for it.
You would be surprised how funding sources affect what kind of research is done and the conclusions that are reached. Our government health agencies are supporting the other side, which is why they are so well funded, and others are not. People who see that may then produce the right results, so they keep getting funded. And if they don't produce the "right" results, their institutions can be penalized too. And they may not get their research published.
This is the real conflict of interest in the IDSA crowd and its supporters. Yes, they may have income from test kits, vaccine research, insurance cases, etc. but the real source that influences their views is the medical establishment support for the status quo.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
You are right about the researchers not being focused on sick people. They work pretty much in isolation on very specific things. You can see and hear that in their presentations. I keep remembering the one guy who loved ticks! He talked about their beauty! He definitely is far removed from the sick people. But he has passion for what he does; and I think he is probably also far removed from the IDSA end of things. Now, NIH is another matter, and you make great points about their funding power driving the direction.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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posted
Due to this funding bias, that's why I think we need to also publish a concise report of what was said and recommended, including what was said at the mike by patients and doctors.
Posts: 13116 | From San Francisco | Registered: May 2006
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I agree very much. As a NIH sponsored IOM conference I look back to the UOS interview and remember just who is in control=Lest We Forget how much control the NIH has:
In fact the discoverer Willie Burgdorfer was not allowed to speak in private with reporters..
-------------------- 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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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
There is a new direction within the orthodoxy and a bit of fear of the advancing nature of the disease. I also believe they see things we don't as to the demographic severity of these diseases. It is why the concentration of ideas toward prevention was so prevalent. I felt many of the researchers on the commitee are moving differently.
Things to look for in future IOM converences which I believe they have to move toward. Is how to help with treatment alternative an infected population.
As an aside: one novel approach to lyme came from one of the researches. Instead of a vaccine, how can we make people allergic to tick saliva. If you can become allergic to the ticks presence the tick never attaches. There were many new ideas presented from the researches from this converence. Activism is important, but being at the converence and getting fresh new ideas from these researchers is important dialogue as well.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Yep.
-------------------- 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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