Wifi, you point out the difficulty of carrying on a "conversation" via forums rather than interactively. The opportunity to ask questions during the flow is gone, and the reading of body language (more a part of our human communications than many realize) is non-existent.
I would suggest that the question you reference is still left unanswered due to ambiguity in the prior posts.
PBF made a celebrity comparison to Michael J Fox for Parkinson's Disease, implying that Lyme Disease needs an equally famous celebrity spokesperson.
The next post had this,
Actually Lyme disease, particularly what is termed chronic Lyme disease, is a very political issue with its celebrity spokesmen and all that goes with it.
...implying that Lyme already has "celebrity spokesmen".
I, the poster of the question, and probably others are still awaiting an answer on whom these spokesmen might be.
(FWIW, as I've had Lyme, and have no desire to suffer a repeat, I did a few Google searches and came up empty. I'm aware of the medical and political controversies involved. But I've never heard or seen a "famous" celebrity weighing in on the topic)