It's great to air out our concerns here. The site has a contact e-mail; better yet to use it and write the clinic. Some here have done that. I spent considerable time doing so yesterday, and appreciated people posting here.
Beyond the name, a concern of mine is what the bill will be spent on. The summary .pdf of Canadian Consensus is copywritten by Carruthers and another, but the full deal is in the Journal of CFS that Klimas helped start. Some form of it, for patient and doctor education, should be up there.
Ten years ago, my first Dx of "CFS"/CFIDS came out of a pediatrician with quite a waiting list. His office had sent a list of tests they wanted you to try to get done before seeing him - mostly immune oriented, little that an HMO did not cover, actually (Sed Rate, CD4/CD8, EBV titers, CMV antibodies, etc.). I got a Dx on visit #1. I think Klimas' clinic should offer a similar list.
Now, infection PCR tests, that's different, especially if it's not a regular lab like LabCorp, Quest, Specialty, etc. That's where I forked over the bucks in ensuing years, even on a PPO. But we don't know what Klimas' lab expects beforehand and what they will test for.
My biggest beef is the referral-in-writing bit, and I asked them why.
This is a toughie. I could not understand, once I moved to Virginia, why every freakin' specialist was acting as a "consultant" and needed a referral. I was on a PPO: why did it matter? A chatty, Cheney-like neuropsych' explained the changes going on in the last couple of years. The government-medical-insurance industry is moving toward a system where all your records, in fact your entire medical history, can be accessed electronically. He was concerned about breach of privacy. We both agreed that the independence a PPO provides of choosing your own doc' is compromised. The "system" requires that all spokes lead back to a treatment hub, a central PCP who knows what's going on. Thus, all specialists want at least a PCP's National Identifier Number and perhaps a wink-and-a-nod.
Whether this has to be in writing - Klimas' instructions are the first I see this. Tell your PCP you want to see an infectious disease specialist, that's one thing. Ask them to write a letter to a specific doctor at a "Chronic Fatigue" clinic - if they'll even do it, they're going to wonder what on earth for, what Klimas vice someone they know is going to do.
Anyway, if you have concerns, voice them to the clinic. I think Klimas' heart is in the right place, though she's taken a lot of **** for striding the political fence. Unfortunately, some people who affect change have to do this for a long time 'til the circumstances allow, even though they know it's costing others tremendously.