A candle in the dark
This is probably going to get reposted to Tumblr, because it's personal-political.
I went to the second #MillionsMissing rally yesterday; I hadn't heard about the first, and only caught this one because feyandstrange mentioned it. It was put on by the Open Medicine Foundation as a way to bring visibility to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and demand adequate funding from public entities such as HHS and NIH. This effort only started ramping up last year, and I still don't know much about it.
I had expected to be one of a couple dozen people holding signs and chanting in an effort to be visible to City Hall and passers-by, but it was all quite organized, with posters, the CFS quilt (I hadn't seen it in many years; it's made from pillowcases), and a roster of speakers. There were about 60 people there, give or take. In the middle of it it was announced that the organization had been given an award by the SF city council, and Ed Lee had declared May 23rd (I think?) ME/CFS Awareness Day in San Francisco. So there was recognition from the people in charge, and some filming and livestreaming going on.
What I hadn't expected -- but probably should have -- was that the two most prominent speakers were Prof. Ronald Davis of Stanford and his wife, Janet Dafoe. They had been featured in a few news articles last year, as his son's sudden affliction had driven him to turn his considerable knowledge and connections to investigating the disease. He's the one who has lit a fire under the research community and started demanding action from the government.
Janet Dafoe spoke about their son's condition, but Prof. Davis spoke about the science. I had heard earlier in the rally that there were studies and papers coming out very soon, funded by private donations. What I hadn't heard was that some serious headway is being made -- he had spoken to a metabolic analysis company, who wrote custom software for the project and provided a metabolome analysis of his son's blood for free (with $20K of their own money). He had already used those blood samples (and those from other sufferers) to essentially rule out any pathogen involved in the maintenance of the disease; what the metabolites revealed was a severe problem with ATP/NAD metabolism, pointing to the mitochondria.
We already know that mitochondria are almost certainly involved -- it's a logical conclusion that has been around for years, but it's gone no further than speculation, and testing has been nonexistent. Prof. Davis consulted with a colleague who is a world-class expert on mitochondria and metabolism, and they worked up a couple of very plausible mechanisms for what's happening. More importantly, they've worked with engineers who have produced handheld devices which can detect metabolic markers of the disease -- not a diagnosis, but a pointer. He said that the development of those machines has given them data which can be used in cellular assays of existing drugs, which is far faster and cheaper than starting with clinical trials. He said, "In the lab we have a freezer full of every drug the FDA has ever approved. We will try them all."
I got to hear a top-shelf medical researcher say essentially what I've thought for a few years now. It looks very much like ME/CFS is a natural metabolic state, similar to those found in bacteria, which is a response to stress. It may be an evolutionary remnant, but it's inherent to human biology. The problem comes when the body can't pull itself back out of that state. To my mind, it's similar to shock: many kinds of trauma can result in shock, but it's easily recognizable as a distinct state, it's treatable, and when the body gets the right signals again (or the alarm fades) it takes rapid steps to restore normal function. People die from shock when they can't be sustained long enough to come out of it, or when it doesn't end in a reasonable length of time... ME/CFS is less life-threatening, but represents the same kind of serious disruption to physical systems, and sometimes it just doesn't turn off. Prof. Davis mentioned that ATP and NAD operate in tandem, handing off to each other -- if both sides get too depleted, you may end up in a hole you can't dig out of. If we could figure out how to get that seesaw going again, we might be able to reassert normal metabolism.
This is all happening incredibly fast for medical science. Barely two years in, we have new studies, new papers, new detection methods and the machines to implement them, and a good start on assays of potential drugs. This is lightning-fast, and happening without public funding. Think, they said, of what we could do with a substantial five-year grant from NIH. Compared to their $30 billion budget, even $250 million is not even 1%, and a huge step up from the measly $6 million allocated now. (Which is, it was pointed out, very slightly more than the NIH spends on hay fever.)
Prof. Davis said that with adequate funding, they could easily crack this disease in five years. Not to the point of just finding a drug that might help via trial and error -- that's been the approach for thirty years. He's talking about actually understanding the mechanism of the disease, finding a cure, and probably finding ways to prevent it from happening at all.
It took a while for that to sink in for me. Later in the day, as I worked over my impressions, I thought about it. They could explain this disease in ways that would be easily understood by doctors. There would be not only validation, but treatment possibilities. If nothing is fundamentally broken by CFS itself, it's possible that we could find "the switch" to flip and return the body to normal -- or as normal as it could be with the attendant sensitivities, deficiencies, and neuroses caused by years of being ill. A cure could be as simple as a couple of weeks of taking a pill.
I'm finding that I can't actually absorb that possibility. A cure is outside of the range of believability for me, no matter how real it may be. This condition is almost all I've ever known, and it's become the way life is. I expected -- still do -- to have it when I die of old age. I internalized the medical community's message of "it's an unknown, and there's nothing we can do"... and now things are moving so fast that I can't catch up. It isn't an unknown anymore. They're finding actual lab tests which return abnormal results, clear ones which point to specific causes. The thought that I might be part of this magical world of validation and information is very strange.
CFS has been a very personal demon in my life. Part of it is the physical isolation. Part of it is that it's my body, not some pathogen, which has crippled me -- I was born with the seeds of the disorder, and I present slightly differently than some others who get it later in life. Part of it is the lack of understanding, not only from friends and family who don't have it, but from doctors across the board -- Mrs. Dafoe said that when her son went to the hospital a year ago, none of the paramedics or ER doctors had even heard of ME, by any name. I've had to wrestle it alone, or in the passing company of other sufferers who know less than I do about my condition, however much they may know about theirs. I've had to adjust my life alone, as my current therapist is the only one I've seen with significant exposure to CFS, and no other medical professionals have had useful advice. We are a community of people who know what it's like to go it alone, without the support we so desperately need. The Immune mailing list gave me some support in the early years, but it's only now that I've felt like we're more than a collection of sick people huddled in the dark.
I'm starting to feel the bare possibility that there might be hope out there somewhere, hope of the normal life that I have repeatedly had to accept is not for me. It's not actual hope yet, as even the possibility is, as I said, too bizarre to contemplate. I'm not even sure I want to have the hope of real improvement. I've been burned too often.
Prof. Davis is optimistic that they will be able to crack this in a handful of years. NIH's director has told him they're moving forward on funding, and that we'll be pleased with the eventual outcome. And yet... there was a skit at the end of the rally, an awkward recounting of the last 30 years of ME/CFS in the public sphere. The CDC knew about it in the 80s, but botched it much like they botched the AIDS epidemic. NIH ignored us after tossing a few pennies at us. Thirty years of neglect has claimed countless lives, not just those which were ruined but those which ended. No matter what the official line says, CFS kills -- perhaps not directly, but when someone dies of "complications of Alzheimers" we don't question what the real driving force was.
My mother asked whether people in the 80s would have been able to run the tests which are so revealing now. I said yes. It would have taken more time and more money than it does today, but metabolites are just chemicals, and we've been able to isolate and identify chemicals for most of a century. This isn't genome sequencing, though that will probably help identify who is at risk and why the set of symptoms varies as it does... this is medicine, and with adequate funding and people, the medicine could have helped advance the science, as it has in other cases. But it stagnated. It stagnated because of deliberate neglect and the promotion of ignorance.
My therapist brought up the memory of the day the Bay Area Reporter plastered "NO OBITS" on its front page: the sign that anti-retrovirals had broken the AIDS epidemic at last. It was a triumph, but it brought to mind all the names which had run on that front page in earlier issues -- all the people who hadn't survived to see hope become reality. Yesterday they read about a dozen names of the hundreds they found who had fallen to ME/CFS, and there are thousands more who have never made it onto any list. People who will never see the validation, the potential cure, which could be found with just a few years of dedicated funding and attention. Funding and attention which could have started DECADES ago.
I think, if we do manage to crack this in under ten years -- NIH or no NIH -- the first reaction I would have is relief. The second would be suffocating rage.
I got sick in 1996/7. If the CDC had been on point, if the NIH had dedicated even $100 million to it, they could have figured it out within a couple of years of my falling ill. I wouldn't still be huddled in the dark twenty years later. We wouldn't have lost so many people to metabolic trauma, homelessness, medical errors, and suicide. So many lives and careers would still be intact.
The parallels between this and the AIDS epidemic are too close to ignore. I finally understand the frustration of feeling that this could be solved if only the people in charge would listen. I always believed that CFS was an end state, that it was irreversible, but now? Now I've heard a researcher state that the evidence points to it being curable, and I want to scream at the CDC "WHERE THE HELL WERE YOU?"
I'm not alone in this, not anymore. I never thought I would see CFS people agitating on the steps of City Hall, but only about half of the people there were allies and caregivers -- the rest, like me, had come out in person. What's more, I never felt like we actually had something to fight *for*. I've avoided making CFS a part of my core identity; I've finally found ways to accept my disabilities, but I have resisted shaping who I am around them. I do not consider myself part of the big-D Disabled community... but by god, if there's a fight here that we could actually win, I will climb into the ring and give it what-for. I need to find some places I can donate blood or surveys to, to add to the body of research going on.
I'm excited, terrified, and angry. I'm also disgusted that it took the fluke of a young man being struck ill whose father had the influence and knowledge to get people to listen. All I can hope is that his suffering doesn't go on for as long as mine has.
May my generation be the last to huddle alone in the dark.
I have an account as Torquill on Dreamwidth, and that's where I posted this. You can sign in with OpenID to comment on the original post, or you can go ahead and comment here; either way works.
I went to the second #MillionsMissing rally yesterday; I hadn't heard about the first, and only caught this one because feyandstrange mentioned it. It was put on by the Open Medicine Foundation as a way to bring visibility to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and demand adequate funding from public entities such as HHS and NIH. This effort only started ramping up last year, and I still don't know much about it.
I had expected to be one of a couple dozen people holding signs and chanting in an effort to be visible to City Hall and passers-by, but it was all quite organized, with posters, the CFS quilt (I hadn't seen it in many years; it's made from pillowcases), and a roster of speakers. There were about 60 people there, give or take. In the middle of it it was announced that the organization had been given an award by the SF city council, and Ed Lee had declared May 23rd (I think?) ME/CFS Awareness Day in San Francisco. So there was recognition from the people in charge, and some filming and livestreaming going on.
What I hadn't expected -- but probably should have -- was that the two most prominent speakers were Prof. Ronald Davis of Stanford and his wife, Janet Dafoe. They had been featured in a few news articles last year, as his son's sudden affliction had driven him to turn his considerable knowledge and connections to investigating the disease. He's the one who has lit a fire under the research community and started demanding action from the government.
Janet Dafoe spoke about their son's condition, but Prof. Davis spoke about the science. I had heard earlier in the rally that there were studies and papers coming out very soon, funded by private donations. What I hadn't heard was that some serious headway is being made -- he had spoken to a metabolic analysis company, who wrote custom software for the project and provided a metabolome analysis of his son's blood for free (with $20K of their own money). He had already used those blood samples (and those from other sufferers) to essentially rule out any pathogen involved in the maintenance of the disease; what the metabolites revealed was a severe problem with ATP/NAD metabolism, pointing to the mitochondria.
We already know that mitochondria are almost certainly involved -- it's a logical conclusion that has been around for years, but it's gone no further than speculation, and testing has been nonexistent. Prof. Davis consulted with a colleague who is a world-class expert on mitochondria and metabolism, and they worked up a couple of very plausible mechanisms for what's happening. More importantly, they've worked with engineers who have produced handheld devices which can detect metabolic markers of the disease -- not a diagnosis, but a pointer. He said that the development of those machines has given them data which can be used in cellular assays of existing drugs, which is far faster and cheaper than starting with clinical trials. He said, "In the lab we have a freezer full of every drug the FDA has ever approved. We will try them all."
I got to hear a top-shelf medical researcher say essentially what I've thought for a few years now. It looks very much like ME/CFS is a natural metabolic state, similar to those found in bacteria, which is a response to stress. It may be an evolutionary remnant, but it's inherent to human biology. The problem comes when the body can't pull itself back out of that state. To my mind, it's similar to shock: many kinds of trauma can result in shock, but it's easily recognizable as a distinct state, it's treatable, and when the body gets the right signals again (or the alarm fades) it takes rapid steps to restore normal function. People die from shock when they can't be sustained long enough to come out of it, or when it doesn't end in a reasonable length of time... ME/CFS is less life-threatening, but represents the same kind of serious disruption to physical systems, and sometimes it just doesn't turn off. Prof. Davis mentioned that ATP and NAD operate in tandem, handing off to each other -- if both sides get too depleted, you may end up in a hole you can't dig out of. If we could figure out how to get that seesaw going again, we might be able to reassert normal metabolism.
This is all happening incredibly fast for medical science. Barely two years in, we have new studies, new papers, new detection methods and the machines to implement them, and a good start on assays of potential drugs. This is lightning-fast, and happening without public funding. Think, they said, of what we could do with a substantial five-year grant from NIH. Compared to their $30 billion budget, even $250 million is not even 1%, and a huge step up from the measly $6 million allocated now. (Which is, it was pointed out, very slightly more than the NIH spends on hay fever.)
Prof. Davis said that with adequate funding, they could easily crack this disease in five years. Not to the point of just finding a drug that might help via trial and error -- that's been the approach for thirty years. He's talking about actually understanding the mechanism of the disease, finding a cure, and probably finding ways to prevent it from happening at all.
It took a while for that to sink in for me. Later in the day, as I worked over my impressions, I thought about it. They could explain this disease in ways that would be easily understood by doctors. There would be not only validation, but treatment possibilities. If nothing is fundamentally broken by CFS itself, it's possible that we could find "the switch" to flip and return the body to normal -- or as normal as it could be with the attendant sensitivities, deficiencies, and neuroses caused by years of being ill. A cure could be as simple as a couple of weeks of taking a pill.
I'm finding that I can't actually absorb that possibility. A cure is outside of the range of believability for me, no matter how real it may be. This condition is almost all I've ever known, and it's become the way life is. I expected -- still do -- to have it when I die of old age. I internalized the medical community's message of "it's an unknown, and there's nothing we can do"... and now things are moving so fast that I can't catch up. It isn't an unknown anymore. They're finding actual lab tests which return abnormal results, clear ones which point to specific causes. The thought that I might be part of this magical world of validation and information is very strange.
CFS has been a very personal demon in my life. Part of it is the physical isolation. Part of it is that it's my body, not some pathogen, which has crippled me -- I was born with the seeds of the disorder, and I present slightly differently than some others who get it later in life. Part of it is the lack of understanding, not only from friends and family who don't have it, but from doctors across the board -- Mrs. Dafoe said that when her son went to the hospital a year ago, none of the paramedics or ER doctors had even heard of ME, by any name. I've had to wrestle it alone, or in the passing company of other sufferers who know less than I do about my condition, however much they may know about theirs. I've had to adjust my life alone, as my current therapist is the only one I've seen with significant exposure to CFS, and no other medical professionals have had useful advice. We are a community of people who know what it's like to go it alone, without the support we so desperately need. The Immune mailing list gave me some support in the early years, but it's only now that I've felt like we're more than a collection of sick people huddled in the dark.
I'm starting to feel the bare possibility that there might be hope out there somewhere, hope of the normal life that I have repeatedly had to accept is not for me. It's not actual hope yet, as even the possibility is, as I said, too bizarre to contemplate. I'm not even sure I want to have the hope of real improvement. I've been burned too often.
Prof. Davis is optimistic that they will be able to crack this in a handful of years. NIH's director has told him they're moving forward on funding, and that we'll be pleased with the eventual outcome. And yet... there was a skit at the end of the rally, an awkward recounting of the last 30 years of ME/CFS in the public sphere. The CDC knew about it in the 80s, but botched it much like they botched the AIDS epidemic. NIH ignored us after tossing a few pennies at us. Thirty years of neglect has claimed countless lives, not just those which were ruined but those which ended. No matter what the official line says, CFS kills -- perhaps not directly, but when someone dies of "complications of Alzheimers" we don't question what the real driving force was.
My mother asked whether people in the 80s would have been able to run the tests which are so revealing now. I said yes. It would have taken more time and more money than it does today, but metabolites are just chemicals, and we've been able to isolate and identify chemicals for most of a century. This isn't genome sequencing, though that will probably help identify who is at risk and why the set of symptoms varies as it does... this is medicine, and with adequate funding and people, the medicine could have helped advance the science, as it has in other cases. But it stagnated. It stagnated because of deliberate neglect and the promotion of ignorance.
My therapist brought up the memory of the day the Bay Area Reporter plastered "NO OBITS" on its front page: the sign that anti-retrovirals had broken the AIDS epidemic at last. It was a triumph, but it brought to mind all the names which had run on that front page in earlier issues -- all the people who hadn't survived to see hope become reality. Yesterday they read about a dozen names of the hundreds they found who had fallen to ME/CFS, and there are thousands more who have never made it onto any list. People who will never see the validation, the potential cure, which could be found with just a few years of dedicated funding and attention. Funding and attention which could have started DECADES ago.
I think, if we do manage to crack this in under ten years -- NIH or no NIH -- the first reaction I would have is relief. The second would be suffocating rage.
I got sick in 1996/7. If the CDC had been on point, if the NIH had dedicated even $100 million to it, they could have figured it out within a couple of years of my falling ill. I wouldn't still be huddled in the dark twenty years later. We wouldn't have lost so many people to metabolic trauma, homelessness, medical errors, and suicide. So many lives and careers would still be intact.
The parallels between this and the AIDS epidemic are too close to ignore. I finally understand the frustration of feeling that this could be solved if only the people in charge would listen. I always believed that CFS was an end state, that it was irreversible, but now? Now I've heard a researcher state that the evidence points to it being curable, and I want to scream at the CDC "WHERE THE HELL WERE YOU?"
I'm not alone in this, not anymore. I never thought I would see CFS people agitating on the steps of City Hall, but only about half of the people there were allies and caregivers -- the rest, like me, had come out in person. What's more, I never felt like we actually had something to fight *for*. I've avoided making CFS a part of my core identity; I've finally found ways to accept my disabilities, but I have resisted shaping who I am around them. I do not consider myself part of the big-D Disabled community... but by god, if there's a fight here that we could actually win, I will climb into the ring and give it what-for. I need to find some places I can donate blood or surveys to, to add to the body of research going on.
I'm excited, terrified, and angry. I'm also disgusted that it took the fluke of a young man being struck ill whose father had the influence and knowledge to get people to listen. All I can hope is that his suffering doesn't go on for as long as mine has.
May my generation be the last to huddle alone in the dark.
I have an account as Torquill on Dreamwidth, and that's where I posted this. You can sign in with OpenID to comment on the original post, or you can go ahead and comment here; either way works.