Shortly after I submitted this thread, I signed up for the summit since I'm in DC. A few days later, I got a
rejection email (below) from Christian John Lillis.
Based on his LinkedIn profile, it seems like his main source of income is consultation to nonprofits like Openbiome, and recruiting patients for clinical trials.
When running a clinical trial, one of the largest expenses can be test subject recruitment. From what I've read, many trials purchase advertisements on social media. It looks like the The Peggy Lillis Foundation grows a patient network by saying that they are doing important advocacy for C. diff patients. They can then refer those patients to clinical trials for a fee.
None of this is particularly problematic. Nor does it necessitate an adversarial relationship with someone like me. It all depends on your outlook. Some people only see an enemy, and others see a potential opportunity and partner. For example, if you're a Democrat, you can view Republicans as enemies and react with pure opposition, or you can try to find common ground to work on with each other and hopefully nudge them more to your side. I think the latter is far more productive and intelligent.
Their response seems to indicate that they were unable to see any common ground or potential benefit of collaboration, and thought that me showing up there would only be a detriment to them. Perhaps by jeopardizing their only/main source of income. Perhaps he thinks his sponsors would only consider me an enemy and would disapprove of him allowing me to be there.
Overall, it seems like a purposeful overreaction in order to have an excuse to deny me entry.
I wonder about the pharma company sponsorships though. Is being a source for test subjects really enough to warrant sponsorships from all those companies?
Hello Michael,
I just learned you registered for Peggy Lillis Foundation's March 31 Summit and Lobby Day. I have heard of you before and am somewhat surprised our paths have never crossed.
I was troubled to see today that you wrote a snarky and dismissive blog post based on an interview I did with ContagionLive. In particular, you wrote, "In the contagionlive video, PLF’s CEO Christian John Lillis is blaming chronic disease on agriculture/diet... Is he really not familiar with Dr Martin Blaser and the long-term harms of antibiotics? Incredible that even the CEO of the major C. Diff foundation is seemingly so ignorant about the microbiome."
Since you seem unfamiliar with me and did not reach out to me before you questioned my knowledge and impugned my reputation, I want to correct the record:
First, the role of diet and nutrition (as well as the US's agricultural policy's role in both) in chronic diseases is well established. Here is just one example:
https://pmc.ncbi.nlm.nih.gov/articles/PMC9921002/ In the conversation you selectively pulled from, I spoke about community-acquired CDI patients who have not recently taken a course of antibiotics. The use of antibiotics in our food is also well-established and may be one of the reasons why people's microbiomes are so degraded.
Second, I am not only familiar with Marty Blaser; we've known each other for thirteen years. He was the honoree at PLF's second annual Gala, and my mother's story begins the "Antibiotic Winter" chapter of his book, Missing Microbes.
Finally, your business sending stool to anyone who requests it without oversight is not in keeping with our values. While I personally agree that stool should not have been regulated as a drug (in fact, I attended several public FDA hearings to argue it should be a distinct class), your choice to violate the regulations governing stool banks poses risks to our public health.
Given your lack of respect for me, our organization's values, and your dangerous business practices, you are not welcome at the Summit or our lobby day.
Please confirm receipt of this email and acknowledge that your registration has been revoked.
Sincerely,
Christian
--
Christian John Lillis
Chief Executive Officer
By "blog post", he's referring to this forum thread.
Since you seem unfamiliar with me and did not reach out to me before you questioned my knowledge and impugned my reputation
First of all, I read an article and watched a video and then submitted them to the forum with my comments. That is what a forum is for. If someone objects to my comments, they're welcome to reply to the forum thread. That's how forum discussions work.
If someone publicly spreads misinformation or harmful or misleading information, it is the duty of other people to publicly correct it. I commented accurately on public statements you made.
Secondly, I didn't have your contact info. I was considering whether to pass on the link to this thread to the person who initially contacted me or to wait and talk to you in person about it. I was considering sending a LinkedIn invite and then emailing you about it with my questions, but I noticed that you viewed my profile first and didn't send me an invite, so I thought I'd just wait.
Thirdly, my brain function is extremely poor right now. It takes me a long time to ponder new circumstances. Plus, I have a lot on my mind, and I'm extremely busy right now, going to the Senate buildings nearly every day.
the role of diet and nutrition (as well as the US's agricultural policy's role in both) in chronic diseases is well established
I don't disagree that it plays a major role. The issue is leaving out other important factors.
The notion of diet and exercise being the only contributors, or even the main contributors to the chronic disease crisis, seems to be a pharmaceutical company narrative given that it's a way to throw up our hands and say "There's nothing we can do". This perpetuates the current phenomena of the vast majority of the population being in extremely poor health, taking a ton of pharmaceutical medications because of it, and thus funding this massive trillion-dollar industry that gets rich off of sick people.
When I saw the senators do it during the hearings related to chronic disease, my reaction was frustration and disappointment that they were so poorly informed. But here is someone who should know better, and they were perpetuating that same uninformed narrative.
In the conversation you selectively pulled from
The article only included a short clip. If there is a longer version with more context, feel free to share it.
Second, I am not only familiar with Marty Blaser; we've known each other for thirteen years
Yet you didn't mention his work or the role of the microbiome and antibiotics in the chronic disease crisis. So my statements were accurate and warranted.
While I personally agree that stool should not have been regulated as a drug
I'm glad to hear we have some common ground.
your choice to violate the regulations governing stool banks poses risks to our public health.
I disagree. Feel free to share specifics. Here are some specifics on my end that support the opposite of your claim:
Analysis of OpenBiome's safety and efficacy (Aug 2018)
And more:
https://forum.humanmicrobiome.info/forums/fecal-microbiota-transplant-fmt/?prefix_id=71
