The reason why communities work is that problems in the world only get fixed if people engage with them. Problems don't fix themselves, and governments can't and wont address all problems in society. We have a deep need for answers and solutions here, and so we engage. We learn. It took some years for my knowledge to be useful. The more people we have, the more we contribute, the faster things move.
There is finally a resurgence in government and institutional interest, at least in the USA, Norway and Australia. Governments get involved when people get involved. There are also signs that some pharma companies aside from Hemispherx are interested in ME.
Its not a sin to not know something, especially with an ME memory, but its a strength to reach out and learn and to inform others. We all start learning somewhere, and its a lifetime need.