Completely agree. It is also indirectly quite useful with regards to future studies, as people wanting funding for hypothesis led investigation don’t always demonstrate a reasonable grasp of the clinical picture. Clear accounts like this are good information, too. The clear accounts of people’s symptoms and experiences have been demonstrably useful before.
Thank you for your willingness, it’s deeply appreciated. However, I would give it a lot more time before that step in your case. Some patients see improvement over time, some significantly so, and many get at least some degree of stabilisation after the crash. So please keep hopeful - we generally advise giving it at least 3 months after cessation before taking stock of where you are.
Unfortunately some of that will be unavoidable. As well as more straightforward financial motivations for opposition to acknowledgement, I’m sure there will be asymptomatic users for whom this will be uncomfortable. I’ve touched on this before:
This is a rare situation, and one that is really quite hard to imagine. I hope the majority reaction will be empathy, but equally there may well be a lack of it from some people. I hope patients don’t let it upset them if that happens. Mitch is right: It’s so, so much easier to dismiss and obfuscate this issue in abstract. Not so much when it’s clear it’s a human being. We’re moving in the right direction, and we’ll get there faster with more voices.