Justin, interesting to hear (see) you have moved.
Justin, I can't speak to how you would get a Lyme clinic to include ME/CFS and / or fibromyalgia. If they have enough patients with the Lyme group, they may not want any more. If they don't have enough patients, then ME/CFS and fibromyalgia are naturally the diseases to include. ME/CFS includes infections of all sorts and has similar symptoms to chronic Lyme. And 70% of people with ME/CFS and lots of those with Lyme have fibromyalgia.
The difference in what I am doing here is that I am starting from scratch, no existing clinic.
First, a politician who has one of these diseases opened the door for me to meet with the CEO of the hospital system. It's who you know. And I just happened to stumble across a politician with a personal interest. I met him through work I do for another client while I was at a chamber of commerce meeting. So, be a member of a non-profit org., such as PANDORA or a local non-profit / support group that has 501c3. Higher ups, including CEOs and politicians listen to org reps more than they do individual patients. Sad, but true.
Then, connect with people in power: politicians and business people. They can get you connections to the medical people in power. In addition to working on this center, I am working on a resolution with a state policy person, who I met through work with another client and met at a chamber meeting. He has agreed to help us get a grant, also.
Here is a key if you are starting from scratch. You can't make it about one disease. There are advantages and disadvantages to each of the diseases: ME/CFS- hard to diagnose and few money-making tests, procedures or treatments, advantage- underserved and fairly large number of patients; fibromyalgia- easier to treat, also underserved but not as much, higher percentage of population, disadavantage-not as underserved; Lyme- highly controversial as a chronic condition, low prevalence, treatments not covered by insurance, advantage- underserved in many states.
So, the advantage of one cancels out the disadvantage of another. If someone has an objection to one, you have another they can embrace. Marly's idea of seeing these diseases as a group is effective in dealing with outsiders. It's not just one obscure, mysterious, controversial disease. (Who would want to do a center on that?) It's a group of diseases with lots of people that need specialized care to make the delivery system more efficient and relieve the main street clinicians of spending time on patients and diseases they know very little about.
Now, I have showed the population numbers and showed the demand to these administrators. The survey helped to show the problems in care. They have some preconceived notions and skepticism. But, we are overcoming these. One thing you need to know, be strategic. Don't try to convince them of the science you believe about any of the diseases. Don't get into a scientific debate with administrators. You are not a clinician or scientist. Just show the patients exist and a center is the best way to go to solve the problems, both for the clinicians and the patients. When you get them to agree to pursue setting up a center, or at least doing CME courses, then you can approach the science part of it and educate the physicians in what you want them to know. Also, must take a conservative approach. Whether it is the clinician at the center or the CME courses, can't be someone hocking vitamins as the cure all when no studies support it. It's not what I believe that counts. It's what I can get in front of them. Once we get a clinician in a center, we'll get them educated on the other stuff. One step at a time.
I started off with the approach that there are thousands of patients in the state and many more will travel here if a center is created. I thought of it like a business man needing customers. I showed the lack of services available in the state. However, as I had the multiple meetings, I discovered their physicians are hesitant because they see us as patients who require long visits without enough financial reimbursement, compared to more patients with shorter time required. Also, the diseases are complex and confusing and the patients never get well. What doctor wants to do a center like that? As Komaroff said, we are a clinician's nightmare. (paraphrased). Want to go broke as a clinician and live with daily frustration, start treating people with these diseases. No good diagnostic tools, not effective treatments, lots of time and not enough reimbursement for that time. I called a rheumatologist randomly here in the state. He said that he accidentally ended up having lots of fibromyalgia patients. The clinical director he worked under had a sit-down with him and explained that since he was spending so much time with the patients and not being reimbursed enough, he wasn't even making enough to cover his malpractice insurance. That rheumatologist left that clinic and now works at the V.A.
We must address the long time the patients require if we are to increase access to good care. In the recent phone call Unger had with patients, she said the response from physicians who are taking the Medscape CME course is that long office visits are the main barrier to their offering good care to ME/CFS patients. (She said 85% say that.)
So, I changed my strategy from "look at all the patients you will have if you have such a clinic" to "these patients are here and more are coming to your physicians; they aren't going away; what is the most efficient (profitable) way to provide care for them?"
I am encouraging and pushing the physician primer. I have already distributed three copies to these administrators. That is based on the CCC. I am particularly looking for clinicians somehow associated with the CCC to suggest as instructors for the CME course.
I've sent you a private message. Please read it and respond.