Open Medicine Foundation (OMF)

Its quite remarkable how little worthy research OMF has managed to publish taken into account how much funding they have gotten.

People would be better of funding Fluge&Mella who actually tries to find treatment within our lifetime. They do good research as well, and most importantly; they replicate.

 

Don’t agree with this assessment. ~$40 million *total* dollars in funding is basically a rounding error compared to *annual* funding budgets of many diseases in the USA.

Need hundred of millions of dollars.

https://www.fiercebiotech.com/research/top-15-nih-funded-disease-areas

https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2775642

https://report.nih.gov/funding/categorical-spending#/

 

I have no idea how funds are distributed from the Sovereign Wealth Fund, but can’t any Norwegians convince the government to use some of its 1.4 trillion dollar fund to fund more of Fluge’s research?

 

Its hard to do when the psychosomatic-lobby has destroyed the public perception of ME/CFS. Also theres no sense of urgency for the politicians. Ok, people are tired - so what? People dont understand the insane symptom burden ME-patients have to endure.

 

Seems good!

Welcoming Danielle Meadows, Ph.D., as OMF’s Vice President of Research Programs & Operations

https://www.omf.ngo/welcome-danielle-meadows/

 

>>Danielle has an extensive research background spanning various institutions and projects. At Leidos, she worked on the NIH’s All of Us Research Program [this includes a PwME cohort] as a Project Manager and Biomedical Scientist, supporting the development and implementation of new modules and initiatives within the program.

In her graduate studies at the University of Delaware, Danielle focused on biomedical engineering under the guidance of Dr. Emily S. Day. Her work involved developing biodegradable nanoparticles for photothermal therapy and targeted drug delivery to treat triple-negative breast cancer, using payloads like Notch-1 antibodies, ABT-737, miR-34a, and IR820. She designed, synthesized, and characterized these nanoparticles, conducted in vitro and in vivo studies, wrote manuscripts, and presented their findings at multiple conferences.

During her undergraduate studies at the University of Notre Dame and through a research opportunity at the University of Houston, she contributed to projects studying the development of wings in Drosophila melanogaster larvae and involving mutation analysis of TAL reporters for biosensor optimization, respectively.
<<

I wonder if she will be interested in the nanoneedle?

 

"Research Updates from the Melbourne ME/CFS Collaboration" from OMF's YouTube channel

https://www.youtube.com/watch?v=rAn_lsFOrhw

I fed the transcript of the above video to Claude (AI like ChatGPT) to create a bullet point summary. I think this is an effective way to allow people without the energy to watch the video to know what it's about. And it can do a much better job summarizing it than I can. It doesn't seem to have made any mistakes, but if I shouldn't use AI generated text here, let me know and I won't in the future.

 

I'm interested in the saline trial. I wonder why Dr Feinberg selected it to study.

I've had an experience of being administered saline infusions during a week of inpatient testing for a heart issue. Some of the testing was under a GA, others involved MRIs, CTs.

I would have expected to feel PEM at some point during the week but I didn't at all, nor after stress testing on a treadmill the following week when as an outpatient I had a concurrent saline infusion.
Will be interested to see what emerges.

This post has been copied and following posts moved to Saline Infusions

 

https://www.biorxiv.org/content/10.1101/2024.06.17.599450v1?ct=

https://twitter.com/user/status/1804255909805215930

 

https://twitter.com/user/status/1839706430024143287

From OMF’s Computational Research Center and the ME/CFS Collaborative Center at Stanford University: "A Network Medicine Approach to Investigating ME/CFS Pathogenesis in Severely Ill Patients: A Pilot Study"
LINK

 

I've been paying next to no attention to the OMF for years. Have they made any progress?

 

The OMF website might have that info? I couldn't find any section organized by date or most recent discovery so it could be they only use social media for their important updates vs. putting that info on the website.

But this page has links for current research (be sure to scroll down):

https://www.omf.ngo/the-end-mecfs-project/#major

 

Deep Proteome and Metabolome Profiling to Decode Myalgic Encephalomyelitis (DOMINO-ME)

Dr. Moreau, the Director of Open Medicine Foundation’s Collaborative Center at Montreal, is conducting a study on deep proteome and metabolome profiling to decode myalgic encephalomyelitis (DOMINO-ME). This study is designed on the principles that we can illustrate differences in patients at the molecular level and use these proteins and metabolites to enable precision medicine for better treatment of each person.

The DOMINO-ME study utilizes a stress test to explore changes in the blood—including proteins, metabolites, and miRNA production—before, during, and after an episode of post-exertional malaise (PEM). This longitudinal look at molecular markers allows the study team to identify changes that specifically correlate with PEM, which may ultimately lead to a better understanding of how to reduce or eliminate crashes.

In addition to evaluating changes in molecular markers after provocation, these markers are being correlated with each participant’s physiology or symptoms (e.g., orthostatic intolerance). In this way, the study team may be able to subtype patients to help identify different treatments that would work better for different subtypes. The molecular markers would then also be used to monitor response to each drug. Importantly, DOMINO-ME is designed to include severe, housebound patients who are unable to come into a clinic. Ultimately, findings from this study might therefore be translatable to more ME/CFS patients.

Dr. Moreau’s DOMINO-ME project is in the thick of the “Data Analysis” stage of the research process. Excitingly, some of that analysis is complete and a manuscript is in preparation.

https://www.youtube.com/watch?v=vn5X4VRVI-U

Link including video transcript

I can't find the study on clinicaltrials.gov. Maybe someone else would have better luck.

Edit: I emailed OMF, who said since it's not a treatment trial, it's not listed on clinicaltrials.gov. I thought it was common practice to do a pre-registration for observational studies as well.