Mold illness is claiming so many victims. Mold has a clear epidemiological and anecdotal connection to ME/CFS and yet the Open Medicine Foundation will not look into it.
However, people continue to ask them to do the right thing. Thanks, David, for your video.
David made it to Truckee, ground zero, along with Incline Village, of the original Lake Tahoe CFS outbreak, and the home of Erik Johnson, the patient zero of that outbreak, who pioneered mold avoidance.
Is the covid-19 pandemic, complete with the “mysterious” long term symptoms that linger in its wake, a replay of what happened in Lake Tahoe in 1985? Lisa Petrison thinks it may be.
https://paradigmchange.me/wp/coronavirus/
Here’s a link to an post by Lisa Petrison about the covid-19 pandemic and environmental toxins, specifically mold.
I think that while this post is addressing acute covid-19, that it is relevant to Long Covid. It’s possible that environmental factors could be a two way street. Apparently, clinicians and patients are discovering that covid is leading to MCAS (mast cell activation syndrome) in many patients. Mast cell activation syndrome is not a syndrome with a totally fleshed-out etiology, and the ultimate upstream cause is not known. Infection has been known to trigger MCAS, possibly bc Mast cells are part of the innate immune system which is the most primal first defense of the body to infection or toxin or invader if any kind.
If long covid involves immune dysregulation and dysautonomia, its possible that environmental toxins or pollutants are contributing to the syndrome. They wouldn’t have to be a first cause, but could be part of a multi factorial feedback loop.
Theo Theoharides is researching links between long covid and mcas already, claiming that mast cell stabilizer luteolin helps with the characteristic brain fog: https://iubmb.onlinelibrary.wiley.com/doi/full/10.1002/biof.1726
In fact, infection and “bad air” working in concert would be just like the original CFS outbreak in Lake Tahoe, or at least how proponents of what user “@Hip” on the Phoenixrising forum calls the “dual-factor theory of ME/CFS ” envision it. Immune suppression by something like mycotoxins or cyanotoxins or pollution makes it easier for a viral infection to become more serious, but also the viral infection causes long term immune dysfunction that makes the immune system react with intense inflammatory surges to environmental triggers. It’s a complex problem that would take many many years of air sampling and thorough epidemiology to get to the root of, but it’s important to start talking about it.
And if there is an overlap in the longcovid/environmental illness/ME/CFS venn diagram, then that means a possibility of increased funding for research on “whatever this cluster of syndromes is”, since long term covid symptoms seems to be receiving far, far more funding than ME/CFS, MCAS, or mold illness. See https://www.nature.com/articles/d41586-021-00586-y for what I’m talking about. Of course it may be overly optimistic that the NIH will actually help us, but it could happen almost by accident, with those funds trickling down somehow, or work in a related field illuminating mechanisms relevant to our disease. Even if we can’t count on the benevolence or competence of Walter koroshetz or Francis Collins, we may be able to count on the collective concern and increased spending on covid research to illuminate an older problem.
Additionally, with the knowledge of how covid is spread, a lot more attention has been paid to building ventilation, sort of vindicating the old “miasma” theory of disease, which was seen as mutually exclusive with the germ theory, which I think is a false dichotomy.
Hopefully, Ron Davis at the Open Medicine Foundation, who has received long covid related grants, will eventually warm up to the idea of using funding to research environmental factors and epidemiology of that disease and ME/CFS as well.
Here are a few relevant videos:
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.
I may edit this, to say more later, but all I can say is I feel bad for not posting this before and I’m thankful to Jeanette for helping me with this project. And I hope the Open Medicine Foundation and Ron Davis finally choose to listen to Jeanette and me and the many others who have asked them to look into environmental factors in their research.
As I have said in a lot of the recent posts, I am simple too tired to continue being the driving force behind this activist work, but I hope to have planted a seed, and I hope others read this and get in touch with me about doing webdesign or writing copy: storzwalker@gmail.com is the best place to reach me. Let’s try and work out a good plan to make the Open Medicine Foundation finally listen to reason.
By the way, I’d like to add a list of links to relevant websites:
A very important theory of the etiology of this disease
A very important post by Erik Johnson on his nanoparticle/mold combination theory
Very foundational article on outdoor toxins by Lisa Petrison
This was made awhile back, I really should’ve posted it then, but I’ve been doing terribly. Which has made it hard for me to do much useful in terms of theory or political action. But I will continue to try to pressure the Open Medicine Foundation into studying environmental toxins, and craniocervical instability, even though I’m very sick at the moment.
https://www.youtube.com/watch?v=rqRbXK_QVyc
Hi All, this is Admin/OP. I’ve been silent for awhile due to dealing with a lot of the challenges of this illness, but I plan to recover and to do a lot more work a lot better and quicker once I am recovered. And I plan to develop this website far beyond what it is now, and to put lots of pressure on the Open Medicine Foundation to make them research toxic mold/environmental toxins in general, and their role in ME/CFS. For now, just updating the site by posting some of these older videos should be enough to make me feel like I’m doing something.
We all know that the NIH counts on ME/CFS patients to be too weakened by their illness to fight back much, but as controversial as it may be to say I think that that this may be true of the Open Medicine Foundation too. They may be happy to not have to deal with more angry protestors–only one real thorn in their side–the thoroughly recovered, and basically fully healthy, but angry Erik Johnson. Imagine if there were many more patients like him! They would have to crumble to their demands. I’m trying to make the virtual version of that real, but an IRL version would be nice too, so if any of you are well enough to protest at Stanford, please consider it.
By the way, i’ll be adding some external links to, to sites that I think deserve the attention, if I remember to do it in between disturbing hypersomnia episodes (where I’m sleeping over 20 hours at a time).
(for SEO, some tags, lets see if this works: Open Medicine Foundation, Ron Davis, Open Medicine Foundation, OMF, CCI, Craniocervical Instability, Mold Illness, Toxic Mold, nanoparticles, MCAS)
I’m making this site out of desperation–the desperation of someone with a severe illness that knows a cure is possible if those who have the power to do so act decisively. It’s desperation, but a reasoned desperation.
This is my message:
I have started out meekly, just asking Ron Davis, a reknowned scientist, to look into the environmental aspects of ME/CFS. But I got no response. I felt powerless. The NIH and CDC has failed us, and I will do as much as my sick brain and body can to reach them as well, but even researchers that are working on this illness are not listening. I want to create a movement to make them listen.
Please watch this video. Please read more on this issue. And then please contact the Open Medicine Foundation, on their facebook or Twitter pages, or at this email address, and ask them to help us canaries.