Open Medicine Foundation (OMF)

mango said:
OMF has had a security incident/data breach that affects personal data. They have sent out an email to people who are affected (at least to people in the EU and UK, according to the email), explaining what happened.

"This breach occurred at some point beginning on February 7, 2020, and could have been in there intermittently until May 20, 2020."

I didn't know about it until now, I'm very disappointed that it took them this long to inform us.
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I gave them a donation a few years ago. I received the email too, and wrote straight back asking them to remove my information from the database, which they said they will do:
Your record will be dleted today. The database company was Blackbaud. We began a switch to another company before the breach and are no longer doing business with them. Furthermore, since I started last year, we have switched payment processors and no longer record the last four digits of credit cards.

We were informed late last year and thought that OMF was caught up in a breach of larger entities and that the information the hackers got from us was encrypted and useless to them. Everyone on our team was part of the breach and noticed nothing. Blackbaud told us that no information was exposed and that we didn’t need to inform our constituents. After further internal research, we decided to let everyone know just in case.

Thank you for your past support. Should you choose to support us in the future, your credit card information will never be attached to your OMF records. Please let me know if I can further address your concerns.
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Wouldn't it be more cost/time effective to see if the metabolic trap works in an animal model? My thinking is you would want to order genetically engineered mice and try to induce the trap to see if they come down with ME symptoms (both fatigue & cognitive dysfunction), euthanize some and go exploring to see if the trap is present in any type of cell. After isolating the cells that show they are in the trap, with the other mice you could develop a treatment plan/method to see if you can spring the trapped cells and evaluate if the symptoms return to baseline. To me, this seems to hold more value in seeing if the metabolic trap causes ME than a ten year old machine that needs repairs to test if FDA approved drugs and herbal extracts can cure yeast. If I’m missing the mark on this feel free to yell at me.
 
Possibly James May said:
Wouldn't it be more cost/time effective to see if the metabolic trap works in an animal model? My thinking is you would want to order genetically engineered mice and try to induce the trap to see if they come down with ME symptoms (both fatigue & cognitive dysfunction), euthanize some and go exploring to see if the trap is present in any type of cell. After isolating the cells that show they are in the trap, with the other mice you could develop a treatment plan/method to see if you can spring the trapped cells and evaluate if the symptoms return to baseline. To me, this seems to hold more value in seeing if the metabolic trap causes ME than a ten year old machine that needs repairs to test if FDA approved drugs and herbal extracts can cure yeast. If I’m missing the mark on this feel free to yell at me.
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Animal models don't work. When I was more cognitively able I worked on this, sometimes paid. An example of my work is Cancer researcher slams requirement for animal models | Phoenix Rising ME/CFS Forums

How would you test for cognitive function in a mouse???
 
Possibly James May said:
My thinking is you would want to order genetically engineered mice and try to induce the trap to see if they come down with ME symptoms
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I am not quite sure what is being suggested b ut surely if you need to genetically modify to induce the trap it won't be the same trap as PWME are hypothesised to have since they are not genetically engineered.

Animal models of causation of disease are almost always by definition self-contradictory. If you want to find out the cause of a human disease the one thing you know it isn't is whatever intervention is used in a lab to try to get something similar.

Basically, I agree with MeSci but animal models can sometimes be useful in confirming the effects of downstream pathways. What they are not good at it identifying primary errors.

I do agree about the yeast though.
 
People: Scientist Ron Davis Is Fighting to Cure His Son's Chronic Fatigue: 'It's Like a Living Death'
A short article. Seems to be a fuller one in the paper version.

Quote:

Ron, 79, a professor of biochemistry and genetics at Stanford University, explains the illness that has upended all of their lives.

"It's such a complicated disease," he says quietly."A few patients get over it, but very, very few."

But Ron, whose gene mapping techniques revolutionized the field of modern biology and were used in the Human Genome Project, is determined to defeat this.

"This is probably more complicated than cancer," he says. "We don't know what's exactly wrong in those who have this disease, but I'm optimistic we can come up with a strategy to solve it."
 
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A yeast model is one way to fast screen chemicals. It would be far faster and cheaper than, for example, mice. Once you have candidates though you would still need a lot more research to find out if its effective in patients. A LOT more research. As I see it this is just another early step in order to decrease the number of possibilities before moving to more resource intense options for deeper analysis.

What they would be studying is enzyme kinetics. They would want to show the problem, then show its resolution. At the least it would be an in principle test of the concept, even if none of the drugs that work on yeast work on humans.
 
Kalliope said:
People: Scientist Ron Davis Is Fighting to Cure His Son's Chronic Fatigue: 'It's Like a Living Death'
A short article. Seems to be a fuller one in the paper version.

Quote:

Ron, 79, a professor of biochemistry and genetics at Stanford University, explains the illness that has upended all of their lives.

"It's such a complicated disease," he says quietly."A few patients get over it, but very, very few."

But Ron, whose gene mapping techniques revolutionized the field of modern biology and were used in the Human Genome Project, is determined to defeat this.

"This is probably more complicated than cancer," he says. "We don't know what's exactly wrong in those who have this disease, but I'm optimistic we can come up with a strategy to solve it."
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Kalliope, I tried to open the link and there were other items there and nothing about Dr Davis. Is that just my idiocy?
 
MeSci said:
Animal models don't work. When I was more cognitively able I worked on this, sometimes paid. An example of my work is Cancer researcher slams requirement for animal models | Phoenix Rising ME/CFS Forums

How would you test for cognitive function in a mouse???
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I read over what you linked and definitely appreciate your work. I realized that mouse models weren’t the greatest way of seeing if something would translate to humans, but certainly not to the extent you laid out. The reason I suggested mice was mainly due to cost/ethics of it versus a trial on humans. To my understanding some of the cognitive dysfunctions that are found in ME patients could theoretically be evaluated in mice; slower thought/processing speeds & recall ability (Barnes Maze, Y & T mazes, Complex Alley, etc.). Is it perfect? Absolutely not, but you can preform it.
 
Averting a second pandemic: Open Medicine Foundation leads groundbreaking international study of Long COVID's conversion to ME/CFS
AGOURA HILLS, Calif., April 7, 2021 /PRNewswire/ -- Open Medicine Foundation (OMF) is leading a large-scale international collaborative study investigating the potential conversion of Post-Acute Sequelae SARS-CoV-2 infection — more commonly known as Long COVID or Post-COVID Syndrome — to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a chronic, life-altering disease with no known cause, diagnostic test or FDA approved treatments available.

Up to 2.5 million people in the U.S. alone suffer from ME/CFS; the COVID-19 pandemic could at least double that number. An estimated 35 percent of Americans who had COVID-19 have failed to fully recover several months after infection, prompting many to call it "a potential second pandemic."

OMF recognized a familiar health crisis emerging, one with eerie similarities to ME/CFS. This crisis presented a unique opportunity to understand how a viral infection — in this case COVID-19 — may develop into ME/CFS in some patients. The goal is to find targeted treatments for ME/CFS patients and ultimately prevent its onset in people infected with SARS-CoV-2 or other infections.

The federal government is only now investing in Post-COVID research, with no focus on its connection to ME/CFS. OMF has already engaged researchers for the largest-scale study of its kind, solely supported by private donors who have contributed over one million dollars to date. When fully funded, the five million dollar, three-year study will be conducted across the globe at OMF funded Collaborative Research Centers, led by some of the world's top researchers and ME/CFS experts.
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https://www.prnewswire.com/news-rel...ong-covids-conversion-to-mecfs-301263890.html
 
"...Ron Davis finishes the Nano Needle diagnostic tool it will prove this is an illness not a syndrome. When he then disseminates it to every lab in America and people all over the world start getting diagnosed, showing it to be a much more prevalent illness than anyone thought, the world will take notice." Whitney Dafoe on Facebook https://www.facebook.com/whitneydafoe/
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To be realistic, that sounds like decades in the future. Has OMF said anything about additional funding for a second Nano Needle study?
 
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