Open letter to the OMF--help save us canaries

[frozenborderline]

Why do biology researchers underrate environmental factors in illness?

"These questions are like seriously burning in my mind, and it's easier to express, um, this way then through writing. So I have one huge question that's been in my mind for awhile, and it's. Why do ME/CFS researchers, and I think actually scientific and biological researchers in general seem to drastically underrate environmental causes of, um, illness and chronic illness in humans?

And I think I know the answer to that one. Um, but I don't know if it's possible to get it across to these people. I think that, um, it's not because they're bad people. It's not because they're stupid. In fact, most of these people are way, way, way smarter than me. Um, uh, Ron Davis is tremendously smart.

Michael van elzakker. Um, other researchers. And so it's not because they're dumb and it's not because they're ill intentioned. It's just purely a deep ideological stumbling block or blind blinder that many or all humans in industrial civilization have. But, um, it becomes especially problematic when.

You're in such a field, um, and I think that the ideological, some stumbling block is a kind of unwritten idea that we are separate from nature or ecology or that we are not subject to ecological changes in the same way that other animals are, that we're not subject to changes in the food, air and water chain because, um, we're somehow exempt from them because, um, we're like magic fasting? beings with opposible thumbs.

Um, and I think basically everyone has that unspoken thought, but it's especially interesting when it comes to scientists because I'm pretty sure if a scientist looked at, you know, animal extinction, they would look at environmental causes for that rather than social or genetic causes. Um, if they looked at a phenomenon like say, craniocervical instability, which is what I have, started happening a lot in a population of animals that didn't have head trauma, um, would they start with doing, like, genomics? I really doubt it. I think that, um, researchers would start with looking at environmental causes. Cause when you have such huge cascading environmental changes is we've had, um, it almost seems like that's the most reasonable place to look. Um, but the ideological funding stumbling block, we're not, um, a part of nature. We're not affected by nature. We can control nature or control our environment so much that it could never be the main factor in our health. Um, and I think that's a really, really hard stumbling block to get over. And I hope researchers can do some, uh, soul searching, um, on that and start thinking ecologically, um, start thinking that biology is a subset of ecology rather than just a totally separate field."

 

[Rufous McKinney]

Why do biology researchers underrate environmental factors in illness?

Our entire existence is based upon Better Living Through Chemistry. See: The Graduate.

This chemistry has now largely destroyed our ability to live on the planet.

And we will not give up our toys now. We are spoiled children. We refuse to see that we mere animals with some type of overwhelming selfish ego, with some kind of awareness of time, and hence- lets squander our lives on sparkling toys, and glittery shells.

So its the most forbidden topic- to discuss what we have done, what we have dumped, drained, tainted, dug up, spewed and defiled.

So we will continue to allow 100s of tons of pesticides to drench our food, our air and water and soil and other creatures and even ourselves and- the sheeples just let it happen.

So nobody is funding the studies we need and nobody is prohibiting the toxic chemicals which have weakened us. I don't see how the person behind their gate is safe from it, but then again, One country thinks they can Nuke the neighboring country and there is no such thing as "wind".

 

[Rufous McKinney]

Why do biology researchers underrate environmental factors

Next- try designing the null hypothesis which would test these types of factors. Thats some of the hardest research to do.

Plus- the environmental factors are synergistic. That bad air plus your lousy diet and that stress and chemicals leaking from your closet all serve to CONFOUND teasing out research results.

And follow the money. Who is funding research which shows that toxic chemicals are toxic?

 

[frozenborderline]

Next- try designing the null hypothesis which would test these types of factors. Thats some of the hardest research to do.

Plus- the environmental factors are synergistic. That bad air plus your lousy diet and that stress and chemicals leaking from your closet all serve to CONFOUND teasing out research results.

And follow the money. Who is funding research which shows that toxic chemicals are toxic?

i agree but i dont even think the next step is hypothesis testing, we havent even done basic epidemiology or data gathering yet.

first make detailed block/county level maps based on illness severity (to look for outdoor air issues) and do air sampling indoors to look for indoor air issues, before even getting into hypothesis testing.

 

[Rufous McKinney]

And I hope researchers can do some, uh, soul searching, um, on that and start thinking ecologically, um, start thinking that biology is a subset of ecology rather than just a totally separate field."

I went forth into the world, armed with what I'd learned from the scientists, the professors, the researchers..but I made a mistake. I thought it should apply to the actual real world right there before us.

What a mistake! I found myself vilified by the scientific community for speaking publically about issues that were ecological in nature. I lost much of the respect I had for tenured professors, at that point.

They refused to speak any public truths. And its was shameful.

 

[Strawberry]

My personal thought is that they are busy trying to figure out how to get us OUT of this predicament. Not how did we get into this predicament. And many people obviously aren't canaries. I think they know, have heard the stories, but it doesn't fix us 100%. Some, yes. But some, not.

 

[frozenborderline]

My personal thought is that they are busy trying to figure out how to get us OUT of this predicament. Not how did we get into this predicament.

We can't do that without a clear view of the etiology imo, which starts with basic epidemiology that we are asking for here

And many people obviously aren't canaries. I think they know, have heard the stories, but it doesn't fix us 100%. Some, yes. But some, not.

I am not promoting this as a cure, if you read my posts it obviously hasn't fixed me 100 percent, but it's a notable enough effect on enough people that it deserves more research than it's gotten. I think of the locations effect more as a clue than a treatment , though if you have enough resources it could be both.

I mean there are plenty of me/cfs patients without clear signs of viruses but we've done 100s of studies looking for viruses, nothing close to that with any environmental factors

 

[Rufous McKinney]

I mean there are plenty of me/cfs patients without clear signs of viruses but we've done 100s of studies looking for viruses, nothing close to that with any environmental factors

I Noticed this statement- at least its a direct comment from researchers-from the lastest Prusty/Naviaux research...

"More than 90 percent of people are exposed to HHV-6 by three years of age. The virus DNA can insert itself into a chromosome and remain latent in just a few cells for years, silently being copied each time the cell divides. For most people, this causes no problem.

“However, we found that exposure to new metabolic or environmental chemical stresses caused cells with an integrated copy of HHV-6 to secrete an activity that warned neighboring cells of the threat,” said Naviaux. “The secreted activity not only protected neighboring and distant cells from new RNA and DNA virus infections, but also fragmented the mitochondrial network and lowered their intracellular ATP reserve capacity. Cells without an integrated copy of HHV-6 did not secrete the antiviral activity.

“Our results show that cellular bioenergetic fatigue and cellular defense are two sides to the same coin in ME/CFS. When energy is used for cellular defense, it is not available for normal cell functions like growth, repair, neuroendocrine and autonomic nervous system functions.”

 

[frozenborderline]

I want to update this thread. Have received disappointing form letter sort of response from omf with excuses and no real commitments to change. Will be covering this in a follow up video if/when I have the energy

 

[frozenborderline]

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 "

 

[frozenborderline]

please, anyone who has these issues, help with this. i know not all me/cfs patients have environmental issues... but those who do, help me with the activism. i cant do this alone

 

[frozenborderline]

https://atomicchesterton.blogspot.com/2020/07/call-to-action-and-awareness-re.html?m=1

 

[frozenborderline]

https://atomicchesterton.blogspot.com/2020/07/keep-them-coming-new-video-by-kaylin.html?m=1

 

[frozenborderline]

is there anybody willing to help with this activism?

 

[frozenborderline]

I shared this all over but only got one person willing to help

 

[Rufous McKinney]

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.

I'm sorry that I'd like to help more. I just can't confidently link my lifetime of illness to- the various theories. So in my case, spending at least 13 years living surrounded by agricultural chemicals applied to almonds. During which I get my repeated impossible bouts of Mono-nucleosis.

So I"m not comfortable making videos but I would be Ok with sending them a letter about this aspect of it all generally.

My lifetime illness condition worsened considerably, after a catastrophic wildfire in which the entire surrounding 100,00os of acres burned up. Lawyers continuously described the after math as Toxic. Do sign up!

I had these toxins- blown into my face and was immersed in it all- for more time. I got far worse ME over the subsequent 6 month period. And whats with: six months?

 

[frozenborderline]

https://openletteropenmedicinefoundation.com/open-letter-to-the-open-medicine-foundation-a-playlist/

some people have helped with this. I put this information here.

 

[frozenborderline]

https://openletteropenmedicinefound...cine-foundation-and-other-me-cfs-researchers/

 

[gbells]

I support Solve CFS over OMF. Solve ME did good work with Bhupesh Prusty PhD.

 

[frozenborderline]

Hey all, heres a website I made, with transcript of this.

https://openletteropenmedicinefound...-open-letter-to-the-open-medicine-foundation/