SpecialK82
Ohio, USA
- Messages
- 993
- Location
- Ohio, USA
Wow - Ian Lipkin is a warrior, so impressive.
It was interesting, I thought when Dr. Lipkin was listing all these agents that he wasn't finding in either the plasma samples (Montoya) or from the spinal fluid (Peterson), and that he was finding irregular expression of cytokines, that he was going to conclude that it looked more like an auto-immune problem. (He even mentioned that their are medicines that will lower cytokine expression. HOWEVER - he was very firm in saying not to go out and ask for medicines to lower cytokines - they are still trying to understand why this is happening.)
He says later on that he still thinks this disease in from an infectious agent! And, he explained that they need to go on and perform a microbiome study that involves fecal samples. He said it is very important to understand what is going on in the gut (I'm paraphrasing here) and this study could be a big turning point, like it may actually find the causative agent. (Someone please correct me if you understood it differently)
This study is extremely expensive and they don't have the funding to finish it, they only have 10% of it. They are collecting patient samples now and moving forward. I wish he would have told us how much he needed - it would be a good follow-up question for him.
He said part of the reason that we don't have the money is because sequestration (US budget cuts) and everything is very, very tight. He urged us to write our Congress representatives and persuade them to fund this study. I do think we patients could put together a much stronger letter if we could get some facts and preliminary findings from Dr. Lipkin and again, how much is needed.
Cross-posted with Sasha below:
Maybe we have advocates who could work with him to come up with a suitable letter, even if he was just advising rather than signing. He has a much better idea of how stuff works than we do. Does anyone have a contact? @Nielk? @medfeb? @jspotila?
We need to do this well, not on the fly.
I couldn't agree more!!
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It was interesting, I thought when Dr. Lipkin was listing all these agents that he wasn't finding in either the plasma samples (Montoya) or from the spinal fluid (Peterson), and that he was finding irregular expression of cytokines, that he was going to conclude that it looked more like an auto-immune problem. (He even mentioned that their are medicines that will lower cytokine expression. HOWEVER - he was very firm in saying not to go out and ask for medicines to lower cytokines - they are still trying to understand why this is happening.)
He says later on that he still thinks this disease in from an infectious agent! And, he explained that they need to go on and perform a microbiome study that involves fecal samples. He said it is very important to understand what is going on in the gut (I'm paraphrasing here) and this study could be a big turning point, like it may actually find the causative agent. (Someone please correct me if you understood it differently)
This study is extremely expensive and they don't have the funding to finish it, they only have 10% of it. They are collecting patient samples now and moving forward. I wish he would have told us how much he needed - it would be a good follow-up question for him.
He said part of the reason that we don't have the money is because sequestration (US budget cuts) and everything is very, very tight. He urged us to write our Congress representatives and persuade them to fund this study. I do think we patients could put together a much stronger letter if we could get some facts and preliminary findings from Dr. Lipkin and again, how much is needed.
Cross-posted with Sasha below:
Maybe we have advocates who could work with him to come up with a suitable letter, even if he was just advising rather than signing. He has a much better idea of how stuff works than we do. Does anyone have a contact? @Nielk? @medfeb? @jspotila?
We need to do this well, not on the fly.
I couldn't agree more!!
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