Are you not aware of Jessica in Unrest. She is not well but she is a lot better than she was as far as I understand. She was able to give a very good presentation at the House of Commons from a wheelchair. The problem is that you cannot draw any conclusions that are of any use to anyone else. Believe me, I have been in this situation of needing to find a way to develop a new treatment for a chronic disabling disease. I did not try 'off label treatment under careful medical supervision'. I set up formal trials, paid for out of my own pocket, and finally persuaded a drug company to take the treatment on. Clinicians who prescribe stuff off label without proper prospective planning or just lazy, and patients should tell them that. We need proper trials. But there is only any point in setting up a proper trial if you really believe it may work. I suspect most doctors who give out off label treatments realise that a trial would come out negative. That is why they do not do what I did.