I strongly disagree that this isn't anything different than a lot of other diseases receive.
The NIH and CDC drag their feet, resist challenge, and try to drown reasonable protest in obfuscation and delay.
The same cast of characters botched HIV, autism, Gulf war,chronic Lyme disease, ALS and who knows what else. Procrastinating about paying Jeannette Burmeister is standard operating procedure.
The HHS viewed M.E. as merely the latest iteration of a faddish hypochondria and its near relative faulty interoception and hoped it would just go away. How this was compatible with the CDC framing CFS as serious as late stage kidney disease or COPD is cognitive dissonance at its starkest, but government can speak out of several sides of its mouth and not care much about the contradictory nature of its utterances.
That's why I've called this "bureaucratic nihilism."
I don't know what will happen in the future with m.e. I take very seriously what Hillary Johnson indicated about Fauci and Collins and their views of the disease. What is different is that someone with the cachet of
Ian Lipkin cannot be ignored. How many times have I listened to klimas as she described the cunning she had to use to get grants funded that were investigating some aspect of m.e. When Lipkin was denied his, he was able to establish why it happened and get the 2 members booted off the SEP. This is genuinely different from anything I've seen in the history of the disease.
Without going into detail, I was very close to the AIDS crisis from the beginning. People around me were horribly sick and dying and NOTHING was done. If the population had remained confined to gay men and addicts nothing would have been done, but it got into the blood supply. That was the turning point, just as the potential threat to the blood supply and vaccines represented by XMRV almost roused the interest of the health establishment.
As for us, we see the horror of neglect up close every day, many of us living it at a very intense level. The establishment,however, saw m.e. as a nuisance and funded it in that spirit. With the complicity of the academic medical world and the failure of what should have been an adversarial journalism, the pieces were in place to do nothing.
What people with m.e. are experiencing is the sort of treatment that marginal players receive in society, contempt, neglect, abandonment. Many of us come from white middle class or more affluent status. The world, no matter how aware of injustice we were, was a place where we realized dreams, an arena for ambition and self expression. M.E lays bare just how vulnerable you are if the right conditions obtain.
Something is stirring at the HHS, but we are looking through a glass darkly. Whatever happens the notion that m.e. is a trivial hysterical social phenomenon is beginning to recede. I think the right kind of science will eventually prevail but, unless something dramatic happens, it might still be long while before effective universally available treatment is accessible.
