There’s nothing like a crisis to expose fundamental weaknesses. As Warren Buffet likes to say, “It’s only when the tide goes out that you know who’s been swimming naked.” The coronavirus and long-COVID pandemic has exposed a lot of bare...
Advocacy Month Details Waiting on Broken Budget Our advocacy is expanding. We have more advocates every year. We’re reaching more people, recruiting more allies to our side every year – so it makes sense that Advocacy Week is no longer Advocacy Week but...
The NIH recently found a way to kick the chronic fatigue syndrome (ME/CFS) community in the teeth again. Jack Reacher couldn’t have done it any better. You have to give it to the NIH: they’re nothing if not masters of disappointment. Almost five years ago...
The big National Institutes of Health (NIH) effort on long COVID is rolling. It hasn’t come easily or quickly and the NIH has a lot of catching up to do. The world has known long COVID is a serious problem since last summer, but you wouldn’t have known it...
Art Mirin seemed hardly the person to lead a movement. A retired mathematician who’d been creating advanced climatological models at the famed Lawrence Livermore National Laboratory in California, Art had never done advocacy before. He had a sick daughter,...
Tom Hennessy and International Advocacy/Awareness Day Tom Hennessy created International ME/CFS/FM Advocacy day over 30 years ago. A fierce and creative fighter, Tom’s advocacy career was unfortunately curtailed by a tremendously difficult case of ME/CFS. To...
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