Hannibal in the Alps
Aug. 1st, 2017 12:22![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
torquillScientists Edge Closer To Elusive Lab Test For Chronic Fatigue Syndrome
(Spoiler: it's cytokines, over a dozen of them.)
I'm sitting here, trying to sum up enough energy to go fix my bicycle and maybe deposit some checks. I've been down for a few days thanks to a hitherto-unknown allergy to raw cashews (hives everywhere, including, as of yesterday, on my air passages). It's caused an inflammatory flare which has sapped most of my functionality. I want to go talk to Walgreens to see whether they've got clearance from my insurance yet for the medication that my doctor at Stanford prescribed, which has the potential to improve my CFS symptoms. And then this link shows up on lily.
While it doesn't change my own situation right now, it's another sign that the cascade is continuing. The trend started in 2015 with the IOM report, which used 64 years of accumulated research to tell the CDC and NIH to stop sweeping CFS under the rug. Then came organized action, Dr. Davis' efforts to throw Stanford's weight behind a search for a solution, the NIH's (still paltry) doubling of funds in 2016, and the constant drip-drip-drip of research papers unraveling different parts of the metabolic puzzle. This is the latest.
I've been telling doctors for years that I have an inflammatory disorder. Every one of them ran a sed rate, then threw up their hands. Even my supposedly-hot-shit doctor who I paid out of pocket, who ran things like stool and hair samples before she gave up, didn't bother to run a simple C-reactive protein test... it took Stanford, 25 years in, to run that basic and non-specific marker. I'm reading now that it has no correlation with CFS, so the fact that mine is high may be a side-issue -- or perhaps I'm just an outlier. Either way, to find a study confirming that cytokine concentration (17 of them!) tracks with illness severity is vindication of my conclusion that my issues are inflammatory in nature. It's evidence that even without tools or a sample size bigger than one, I can gain some understanding of my disease just by living with it.
Every advance that has happened since 2015 has been balm to the souls of those of us who have been screaming and clawing at the medical establishment, only to be turned away with a shrug. It's little trickles of hope, an incremental return of some kind of faith that science, even medicine, might possibly be able to fix this. It's evidence that there are some doctors who still care, some people in bureaucracy who don't simply find us an irritating inconvenience, malingerers or hypochondriacs. We are finding our humanity and dignity being returned to us, bit by bit. Slowly, oh so slowly, but even a slow drip is welcome to the person dying of thirst.
With the science we have now, with the minds being turned to the problem, the progress is very likely to be exponential. One revelation can eliminate a near-infinity of dead ends, and the research entities working on this are so small and independent that they can pivot quickly. Right now the lines are starting to converge; once they do, once we have a good outline of what is probably happening, all our forces can be brought to bear on digging deeper and applying existing resources (such as drugs) toward a solution.
This means that not only will I see this unraveled in my lifetime, I'm likely to see it happen before the end of the decade.
It's an unexpected civil-rights battle, one to be won by science... but CFS sufferers may soon find ourselves returned to the ranks of good people who had the misfortune to become sick, rather than slackers looking for attention and handouts, or mentally ill people who obstinately refuse treatment. It's a victory which you will never see mentioned in announcements of a breakthrough, but it's just as important.
(Spoiler: it's cytokines, over a dozen of them.)
I'm sitting here, trying to sum up enough energy to go fix my bicycle and maybe deposit some checks. I've been down for a few days thanks to a hitherto-unknown allergy to raw cashews (hives everywhere, including, as of yesterday, on my air passages). It's caused an inflammatory flare which has sapped most of my functionality. I want to go talk to Walgreens to see whether they've got clearance from my insurance yet for the medication that my doctor at Stanford prescribed, which has the potential to improve my CFS symptoms. And then this link shows up on lily.
While it doesn't change my own situation right now, it's another sign that the cascade is continuing. The trend started in 2015 with the IOM report, which used 64 years of accumulated research to tell the CDC and NIH to stop sweeping CFS under the rug. Then came organized action, Dr. Davis' efforts to throw Stanford's weight behind a search for a solution, the NIH's (still paltry) doubling of funds in 2016, and the constant drip-drip-drip of research papers unraveling different parts of the metabolic puzzle. This is the latest.
I've been telling doctors for years that I have an inflammatory disorder. Every one of them ran a sed rate, then threw up their hands. Even my supposedly-hot-shit doctor who I paid out of pocket, who ran things like stool and hair samples before she gave up, didn't bother to run a simple C-reactive protein test... it took Stanford, 25 years in, to run that basic and non-specific marker. I'm reading now that it has no correlation with CFS, so the fact that mine is high may be a side-issue -- or perhaps I'm just an outlier. Either way, to find a study confirming that cytokine concentration (17 of them!) tracks with illness severity is vindication of my conclusion that my issues are inflammatory in nature. It's evidence that even without tools or a sample size bigger than one, I can gain some understanding of my disease just by living with it.
Every advance that has happened since 2015 has been balm to the souls of those of us who have been screaming and clawing at the medical establishment, only to be turned away with a shrug. It's little trickles of hope, an incremental return of some kind of faith that science, even medicine, might possibly be able to fix this. It's evidence that there are some doctors who still care, some people in bureaucracy who don't simply find us an irritating inconvenience, malingerers or hypochondriacs. We are finding our humanity and dignity being returned to us, bit by bit. Slowly, oh so slowly, but even a slow drip is welcome to the person dying of thirst.
With the science we have now, with the minds being turned to the problem, the progress is very likely to be exponential. One revelation can eliminate a near-infinity of dead ends, and the research entities working on this are so small and independent that they can pivot quickly. Right now the lines are starting to converge; once they do, once we have a good outline of what is probably happening, all our forces can be brought to bear on digging deeper and applying existing resources (such as drugs) toward a solution.
This means that not only will I see this unraveled in my lifetime, I'm likely to see it happen before the end of the decade.
It's an unexpected civil-rights battle, one to be won by science... but CFS sufferers may soon find ourselves returned to the ranks of good people who had the misfortune to become sick, rather than slackers looking for attention and handouts, or mentally ill people who obstinately refuse treatment. It's a victory which you will never see mentioned in announcements of a breakthrough, but it's just as important.
