People have asked me, "Camp, what is this middle you talk about, that is neither about the IDSA nor ILADS?" and my response is as follows:
During the October 2010 Institute of Medicine (IOM) workshop, Pamela Weintraub gave a presentation and told of her own personal experience with Lyme Disease, an experience which has been written about in Cure Unknown and also issued as a written statement for the IOM.
This story - as usual - is gripping and hits me to the core, as it does many Lyme patients. But as much as that was gripping, what was said during the Q & A session afterward was more thought-provoking because I hadn't heard it before:
Lonnie K (IOM mod) asked:
"Question for Pam: What do we need to do to find common ground and move forward?"
And Pam said:
"This very polarized fighting is the most destructive thing out there and #1 reason so many people are so sick out there and we’re still here. So many other journalists have capitalized on the sound bites of either side and the drama. For me that’s a distraction to the story.
When I went out and interviewed many people of high expertise, most scientists working with this on a deep level were very intelligent, thoughtful people who had very nuanced ways of looking at this. And in the nuance I was able to see a path. But when you pull back out and read these articles about the controversy, it becomes shouting that drowns out the actual complexity and nuance... and work we need to do.
I don’t know what can be done. Patients are very angry, I understand, look what happened to me with a classic case in my son and I had to go to doctor to doctor. There was such a political sense of staying away from Lyme or finding other diagnoses first.
I don’t know how to heal this. I think there are people who can work together to heal this, but they’re not the people at the extremes... they’re the people in a center space. I wish everyone could get there together because then perhaps patients could be healed. This can’t be dumbed down, it’s not going to get us anywhere."
This entire response that Pamela Weintraub said where the Lyme controversy can only be dealt with by those who are coming from the center space, or middle.
I want to know how to find that center space or middle, too, if that is what is going to get me and others out of this mess.
And for me, I think finding it involves learning as much as I can about the microbiology, research, researchers, and decisions behind the scenes that form policy in treating this disease.
On a larger scale, I think finding it means building alliances within the scientific and patient community, and this requires the collaboration of many different people.
Coming from the center space or middle is not going to be the work of one person or even a small committee. It's going to take many people all working towards a common goal.
And it isn't just Pam who is saying this. In 2010, Dr. Brian Fallon, of the Columbia University Lyme & Tickborne Diseases Research Center, gave an interview which emphasized the need to look at the gray area in what we know and don't know about Lyme disease and the importance of meeting in the middle:
TFL: "Should Lyme patients be optimistic about the research being done on Lyme?"
"Yes, I believe there is tremendous progress being made with excellent research both nationally and internationally. We see that research is revealing the “gray” in our understanding of Lyme disease and that the extreme positions held by polarized camps are no longer tenable and must move closer to a common middle ground. We are hopeful that this evolving knowledge will curb some of the polarized opinions about Lyme disease.
Paradigm-shifting research in mice shows that the spirochetes that cause Lyme disease can persist, even after antibiotics, thus possibly contributing to ongoing disease. Research by Dr. Alaedini using serum samples from our Columbia human specimen bank now demonstrates that patients with chronic symptoms have elevated levels of anti neuronal antibodies in their blood; this key finding suggestive of an over activated immune system may help to explain why so many patients have chronic symptoms and are not benefiting from existing antibiotics. This finding opens up new opportunities to study novel non-antibiotic treatments.
Neuroimaging studies now demonstrate that patients with chronic Lyme symptoms have specific areas of the brain that are compromised metabolically; this confirms the importance of the central nervous system as a mediator of the pathophysiology of chronic symptoms and helps us to understand why so many patients have “brain fog”.
Research with ticks conducted by our former Lyme Center Fellow Dr. Tokarz has led to the development of a new testing method that assesses for multiple co-infections using only a single specimen of fluid. This work also demonstrated that a small portion of NYS ticks also carry the Powassan virus, another dangerous organism. In all, researchers are looking at many different issues to do with Lyme and we are all motivated and encouraged that the conclusions will result in significant advances in diagnosis and treatment."