3 Pam Weintraub at 2010 IOM: on being in the middle

I realize that in my rush to write extensively about the Chicago Tribune's *clears throat* journalism... I hadn't mentioned what brought my mention of Pamela Weintraub to my blog in the first place, and why what she said is such an important part of gaining acknowledgement of Chronic Lyme Disease and beginning to understand the complexity of tickborne illnesses.

During the October 2010 Institute of Medicine (IOM) workshop, Pam 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.

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.

I know some of you absolutely love Pamela and she did a tremendous amount of work on Cure Unknown and help in getting the Chronic Lyme patient's story across. (You should know, by the way, that she does not use the term "Chronic Lyme" for herself, and I may follow suit, regardless of the familiarity it brings - read about it in comments here.) I also know that some of you who are reading this blog might find her to be an unreliable source of information because she is a science journalist and not a scientist, and many a science journalist has oversimplified the facts or missed a crucial piece of information that would change the entire message of their article had they published it. Everyone is entitled to their opinion, of course.

That said, I think Pam is right about this one: Fighting and polarizing this issue for years - and I mean years - has not gotten people very far in terms of acknowledgement and treatment. 

I'm glad a few bills got passed to protect doctors who prescribe long-term antibiotics - that certainly helps patients in some ways - but it is a case of too little, too late, for many patients. Including patients who should be getting their treatment covered by insurance and not selling their homes to finance it. 

How do I think we can work from the center or the middle? Difficult question. I'll take a stab at it, though.

I think it requires taking a step back and assessing where we are as patients, activists, advocates, and those standing alongside them. What are we doing? What are our goals? How do we spend our time?

It requires knowing who and what your detractors believe and why. What is at stake for them? Does all of the IDSA believe as the guidelines panel does, or do some of that 8,600 have doubts or never even really learned about Lyme Disease and other tickborne infections?

I think it requires uniting all the patients and their advocates and working toward a common goal, not twenty or two hundred different ones, all with their own personal bent.

The AIDS community was able to rally their efforts together for a cure. In ten years they ended up with a treatment that has extended their lives so that many are now living long lives HIV+; working and playing while managing their condition. And there is ongoing work on a cure, though they're not there yet.

Ten years.

We've been at this shit with Lyme for what? Over thirty years? Beginning with Polly Murray?

It's been said that the AIDS community could only get the attention for their disease because it was immediately clear it was sexually transmitted and transmitted through transfusions, whereas Lyme Disease is not (though I know there is speculation about both of these, let's put these issues aside for the time being - it's not really relevant to where this is going right now). And this may be true, but this is not a good reason for Lyme Disease and other tickborne infections to not get attention. 

The one thing the AIDS community had that the Lyme community currently doesn't have is enough commonality of direction. Each group has its own drives towards somewhat different goals (though there is overlap) and groups are not united enough towards one specific goal. Unfortunately, the one thing the Lyme community currently has that the AIDS community did not have is one select group of panelists setting the standard of care for Lyme Disease and other tickborne illnesses worldwide - and not even just the US, which is its intended jurisdiction.

If what Dr. Willy Burgdorfer says is true - that 30 years of research has produced the same thing  - nothing - and the development of new serology has to be started from scratch; if he and other researchers say that Borrelia can persist and symptoms can vary based on genotype - then what is needed is more research and for the word to get out about existing research from the researchers themselves.

Science is what turned things around for AIDS patients. Science can turn things around for Lyme Disease and tickborne infection patients as well.

I don't think anyone should have to wait for a cure to continue treatment, and as long as we have LLMDs there is a shot at getting it. But I do think in order to continue to justify the need for treatment (I know, crazy isn't it? People need treatment now!) and to make it more widespread, that the first goal should be to make sure the case for persistence in humans and its significance is beyond questioning. 

Otherwise, there may always only ever be a handful of LLMDs treating this. Is this what everyone wants for their children? For their family? For their friends? 

I'm concerned about it, because watching changing epidemiological Lyme Disease (and other tickborne illnesses) data for humans and animals together is scary. It's only going to get worse as time goes on. And then we'll have what... even fewer doctors treating even more patients? Or worse - just more people who are sick and without treatment?

Instead of beating at the brick wall that is the guidelines panel, look for Volkman and others who have rejected it. How about Dr. Luft and Dr. Barthold's new research? How about more research that's already been out there for ages that needs to be brought to light?

How about pushing for clinical trials with larger patient populations - to prove persistence in human patients, and not just whether or not specific long-term treatments with antibiotics will work or not? 

Those four clinical trials with small sample sizes that get cited ad nauseum? What if they weren't about long-term antibiotic treatment, which many medical professionals are loathe to touch? Have trials that show persistence first. Incontrovertible proof.  

Then it will be much easier to get better-designed long-term antibiotic trials done and push for research for better antibiotics and other medications. Antibiotic R & D has been incredibly behind the curve in years and that alone is going to cause problems in the future.

Heck, I'm about ready to sign up and have someone take a biopsy from me from several places - those places are hurting anyway and that isn't going to change any time soon from my experience!

Instead of tearing at your neighbor there on Lyme-whatever-group who is arguing with you about the value of detoxing and bouloke or Samento, put your enmity aside and work towards the issue of persistence. You can still make whatever choices you're going to make. But I think this one is going to be a big one to not duck out of. Because once peristence and its significance is established beyond a doubt, then all the naysayers on the Tribune and the panel and science blog and god-knows-where-else can STFU and there will be support for antibiotic and antiprotozoa treatment, where and when it is needed. And insurance should cover it, and doctors will stop getting cited and disciplined for treating.

I think this is THE issue: persistence. 

Not whether or not you need to challenge someone's posting because they said something about treatment you disagreed with, or because you want to use an herbal treatment like Buhner's or Zhang's protocol instead of antibiotics because you can't afford the antibiotics, anyway. 

All those issues? They are detracting from the main one underlying it all. All those issues will still be there as you live your life day to day, but in the meantime progress will really be made if this one issue - persistence - is worked on. 

And all those issues? A lot of those issues are bound to become non-issues if everyone's access to treatment improves and more research is done to develop better antibiotics and other technologies to stop persisting Borrelia and other infections from wrecking havoc on your body. And if it turns out that there is an immune dysregulation process going on, that will probably also be confirmed in the process of looking at persistence. But it isn't going to happen unless research is encouraged in that direction.  Otherwise, it's just going to remain someone's seemingly unsupported speculation of some panelist's wet dream of what is happening in "Post Lyme Syndrome" until then.