heres a followup letter im writing to my fellow EI patients in hope of achieving some specific advocacy actions
“While I am very ill currently and need to spend most of my time figuring out my own care, it is not lost on me that our community is in many ways on our own and we need to fight even when we should be able to rest. We need to focus on the big picture even when we should be able to focus on the details of our own illness, avoidance and health.
This is why I made the video “Open Letter to the Open Medicine Foundation” in October. I wanted to address the scientists at the Open Medicine Foundation and tell them my personal story relating to mold and the difficulties of avoidance, but also the necessity of avoidance, and what I’ve learned throughout the process. I also wanted to illustrate that mold avoidance was a productive experiment that yielded results, but also more questions. What is different with mold and supertoxins in this day and age that wasn’t true hundreds of years ago? How could it cause my ligaments to degenerate so quickly that I now will need surgery?
I also wanted to point out that the lack of scientific inquiry by organizations such as the OMF, into environmental factors, is not only problematic from an empirical point of view, as it means missing major amounts of data about me/cfs, but is also a social and epistemic injustice that will lead to patients suffering a lot more and even dying.
So I made this video, and I thought I might get some response. I posted it on social media, and I asked others to share it, and I sent it to the OMF. I never got anything better than a form response that says “we want to look into mold but don’t have the technology or money to do it.”
In a follow-up video here: https://www.youtube.com/watch?v=ZnlFAiuQ_-E , I explain why I don’t find that response compelling or adequate. In short, scientists can be activists too, in fact they are in a better position to advocate for funding than sick patients are, especially if they find a great clue or compelling hypothesis like we are handing them.
I also am sick of them simply saying they might test for mold once in blood, or even a house. As we know, this issue is beyond simple, ordinary “Mold”. Mold is used as a shorthand, and Erik hypothesized that it is mold spores and mycotoxins combining with adsorbed nanoparticles. But that’s a hypothesis that needs to be tested. A broad net needs to be cast in the environmental research. I address some more concrete demands for the Open Medicine Foundation in this video: https://www.youtube.com/watch?v=FHupuLDeGYM
But all in all, it is a sisyphean task to do alone. This organization, the most well-funded and influential ME/CFS research org, refuses to budge on this. Because I am, in Erik’s words, a “mere patient”, I can be easily ignored.
However, my video is one of the top ten results when you search “Open Medicine Foundation”. As an advocacy organization that is small compared to orgs for other , more well funded diseases, Im sure they care about their image. What if there were ten videos like mine? Personal, heartfelt testimonials. Everything from narratives to pleas, to scientific literature supporting this. What if there were fifty? 100? Hundreds, even thousands? There are more than 10000 people within the broader “mold avoidance” community I’m sure. There is strength in numbers. If the top ten video results on youtube for “Open Medicine Foundation” were all videos like this, with similar titles, and criticism of the OMF, they might start to take notice. If they were bombarded with emails that contained these heartfelt testimonials, they might notice.
My personal health is fading fast. Mold, and various infections, all damaged my ligaments in my spine so badly that I cannot recover solely through avoidance, even though over the last year it has been a blessing. So I will have surgery, and my future is uncertain. Now I’m bedridden again, even though mold avoidance had brought me from bedridden to walking, talking, and reading a lot. It is hard for me to even write this. But I am desperate to secure a future for all of us. Many of us have been abandoned by mainstream science and doctors to the extent that we get nihilistic about the possibility of science solving this problem at all. I don’t think thats the right approach. It’s too big a problem to solve alone, and “small s” science is a democratic, empirical process that isn’t about institutional clout. We need to force scientists to do their job and save us.
So I am begging you, all of you, to take 2 or 3 or 4 or 5 or however many minutes out of your day you can spare, and make a video like mine. Title it “An Open Letter to the Open Medicine Foundation”, put any details you want in the description, and upload it to youtube. We are all in this together–on this dying planet, in this blind spot in medicine and science, and we have to fight to make it out alive.
https://www.youtube.com/watch?v=FHupuLDeGYM&feature=youtu.be “