These thoughts cross everyone’s minds here. But you’re getting way ahead of yourself here. This speculation is exactly that, speculation.
1. The time it will take to get a treatment: We don’t know. But the faster we fund our researchers, the faster it will come. There could be drugs and treatments already available that will be helpful to us. There is also constant research into relevant tools and drugs that is happening independent of us. This does not appear to me to be “nowhere in sight.” Interest from the scientific community, and recognition from clinicians have come a long way in a relatively short time.
2. Adverse reactions to potential treatment: We all went through a traumatic experience here. None of are going to be able to take a drug or treatment without considering this again. That will take work to get over, but you’re way ahead of yourself here. We have no idea what a treatment will look like, so certainly not the safety profile of that treatment. Don’t catastrophize here. The treatments the experts expect to be relevant to us are increasingly specific without off-target impacts. Try to be optimistic, I know it’s hard - believe me.
3. Cost of Treatment: We don’t know this yet either. A lot of our experiences with clinicians so far has not been covered (at least in the US), that’s because our condition is not recognized and our healthcare system is shit. If it were recognized, it would likely be covered by insurance. I’ve worked in the regulatory field re. this before – I speak from experience.
Lastly, yeah I agree this shouldn’t be on us. But if there’s one thing that has been on full display the last few years, is that our world is not as just as we’d like it to be. The activist in me would say to you, we can change that. But for now, we have to be our own advocates. It sucks. It is not fair. And I too hate that we live in that reality.
But if we can pull ourselves out of this, it could only take a little effort to discover something that would bring about the external support we want and need.
I’m sorry @Taw, I’m not trying to rag on you here. Nor am I pressuring you do contribute more than you can. I truly understand your concerns. I don’t always feel optimistic, obviously this disease can bring you down. And I’m a pragmatist, but I think there is real reason to be hopeful. I wouldn’t spend my hard-earned money if I didn’t think we can do this. I hope you stay well man.