I'm sitting here at 6:20 am waiting to finish up with Whitney and unhook his j tube pump. I can't really think of how to convey how meaningful and wonderful it is to have Ben and Claire here. Seriousness, fun, sadness, laughter, profound connection. That will have to do.
The research he's talking about has been developing since Ron started working on this. Whitney's blood, one week at a time, week after week, only enough money to do one experiment per week. Gradually going deeper and deeper into the metabolism and mechanisms of his sick cells, developing technology along the way to answer each question as it came up. Now gradually seeing if what they've found is true for other ME/CFS Patient's (yes, so far) or healthy controls (no, so far). Excitement and anticipation building. Hope. Enabling tests of treatments. He's absolutely focused on doing things that will lead to treatment faster, and avoiding distractions. That's why you don't hear too much from him, why the video isn't done yet (will be soon!) and why no paper is published yet. Given the choice between writing and making progress, he chooses progress. Driven by the suffering of Whitney and all of you. And me. Care taking is hard and devastating, we are very hopeful and Ron, a conservative scientist, is optimistic.
This new NIH RFA is a hard one. Not enough money. Lots of requirements that may distract from his progress. But he's gathering a team and figuring it out.
Hang in there! And keep bugging NIH for more money, and keep up your wonderful fundraising that is keeping him going! Thank you so much to you and to OMF and Linda Tannenbaum!