It could be argued that my demands thus far have been too vague. I don’t believe this to be true, but “study environmental factors” could be seen as too vague a demand. Of course, it shouldn’t be for a scientist that has basic knowledge of epidemiology or ecology or biology; but just to not leave these kinds of things open to chance or accusations of vagueness, I have made more specific demands here. As always, interested in feedback.

I think that there are a wide variety of ways that the Open Medicine Foundation could conduct studies on environmental factors, even with their budget which is limited compared to the budget researchers studying more well-known diseases have. Basic epidemiological types of studies, like detailed maps, down to the county level or even neighborhood and house, would be helpful. Looking for geographical clusters. But also air samples with use of mass spectrometry: basically looking for anything that may be different in the air of houses of people with ME/CFS than controls. This could be anything from mold spores, to mycotoxins, to nanoparticulates of various materials. I admit the latter would be a bit more difficult than basic epidemiological study but its worth doing. If Ron Davis were to get in touch with me, or if anyone from the OMF were to, that is what I would desperately urge them to do.

This article is an excellent example of the detail, rigor, persistence, and ability to see second-order effects one needs when looking into possible environmental toxins. I recommend reading the full article, but the big reveal is essentially that while a given cyanobacteria was indeed producing the suspected eagle-killing toxin, it couldn’t do so without a particular chemical compound that is not “natural” and would be present only as a result of human-made pollution.

Another demand is that instead of simply telling patients that their real enemies are the NIH, who don’t fund this research generously enough, the healthy volunteers and employees at the OMF should actually help us with activism. I am bedbound, and I know the NIH is an enemy, but they find it even easier to ignore me/us, than the OMF does. So if the OMF is truly on our side, Ron Davis, and Linda Tannenbaum, and Janet Dafoe, should all be holding signs outside the NIH, or chaining themselves to something inside the building, rather than just pushing off the responsibility to patients who are far too sick to do this work. I am planning some virtual actions against the NIH, but god knows, it’ll take me way longer and more of my precious energy than it would a normal, healthy person.

My original video asking the OMF and Ron Davis to look into this was so long ago, I scarcely remember what I said, but I think it was fairly politely phrased. It didn’t seem to work. I hardly have any hope left, for a variety of reasons. I am sicker than ever. I am out of money. I am strongly considering assisted suicide. But the OMF and the NIH could change all of our lives. I continue to insist that it’s not impolite and that it’s totally warranted to go after the OMF like this. They receive the most research funding of any ME/CFS institution I’m aware of, much of it from patients, and they have refused to look into environmental causes for a long while.