I can't say I'm entirely surprised about the treatments offered, though I'm not sure there is any kind of belittling intent behind them. I went to a similar clinic in Toronto, and though I have no direct experience with the BC place, I suspect the situation may be similar. As I understand it, because the clinic wants to keep a certain amount of credibility and funding from the healthcare system, they can't do anything too far outside of the "mainstream", at least not without being very careful to go through exactly the proper channels. Officially their main treatment option was "patient centred self-management" but the doctor I saw was regretful and seemed genuinely frustrated that she didn't have more to offer me.
However, she's been trying very hard to get a Valcyte clinical trial going so that she could offer that to patients. She pushed the IACFSME Physician's Primer heavily with my doctor, including support of the medications listed in it. She definitely understood how very sick we can be, and firmly denounced my original misdiagnosis of depression. She talked a lot about my viral levels and documented the other objective physical signs of illness.
And although she set me up with an exercise physiologist for what could be classified as "GET" in theory, it was the type advocated by Dr. Snell and the Pacific Fatigue Lab types, overseen by someone who has studied their work - careful monitoring of heart rate, etc. and absolute avoidance of anything that might trigger a crash. My physiologist has never ever advocated doing more, or increasing my exercise or activity level. In fact, she's been very adamant about trying to make sure I'm doing less, resting more, etc. That's the same message I got from the doctor at the clinic.
It isn't a cure. And they know that. But it does help. And I didn't find anything in it reminiscent of what's going on in the U.K. Absolute validation of the physical nature of the condition, with emotional supports only in place to try to help make it through a difficult situation. Is that not the message that's coming out of the BC location?
The impression I get is that if they push too far outside of the currently accepted box, they risk being discredited or shut down. And it may be better for them to work slowly to change the climate than to be pushed out of it. I have received a certain amount of credibility from other doctors now that I can say I've been to see this clinic. So it has been helpful to me. Whereas suggestions that came via certain other doctors have been immediately dismissed, because those doctors are known for stepping too far outside of the bounds of regular medicine.
It's a sad state of affairs, and it shouldn't be that way. But I think it's the overall view of the other Canadian doctors that we need to change. I get the impression the folks running these particular places do understand, and mean well, and are trying to do what they can. I would hate to discourage them with negative backlash. The province needs to see that more help, more clinics, more support is needed for us. I would worry that if patients revolted against these places that the powers that be would see that as a sign that they were wrong to spend money in this direction because clearly there's no demand, rather than realizing the problem is that they don't go far enough. Compared to having no provincially-supported clinics at all, this seems like a tiny step in the right direction. A very tiny step, mind you, but still a step.
I think the clear message should be "this is a tiny step, but we need MUCH more" rather than "this is no good".
(unless for some reason the BC version is spinning ME as a mental illness, but that isn't the impression I've received - please correct me if I'm wrong)
