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.
 
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Marky said:
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.
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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?
 
Jaybee00 said:
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?
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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.
 
>>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.
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I wonder if she will be interested in the nanoneedle?
 
"Research Updates from the Melbourne ME/CFS Collaboration" from OMF's YouTube channel



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.

- Dr. Chris Armstrong, Director of the Melbourne ME/CFS Collaboration, introduces Dr. David Feinberg, a GP who has begun a PhD within their group at the University of Melbourne.

- Dr. Feinberg shares his personal experiences with ME/CFS, including a colleague diagnosed during GP training and a close friend recently diagnosed with post-viral fatigue syndrome, which motivated him to pursue research in this field.

- The first project Dr. Feinberg is working on involves assessing ME/CFS patients' response to food, aiming to quantify and measure the impact of food on symptoms and potentially develop a diagnostic test.

- The study will utilize various physiological and functional tests, including computer programs for brain function and cognition, pupillary response, grip strength, and metabolomic and proteomic studies.

- Dr. Feinberg's next large project as part of his PhD will be a saline trial, investigating the use of saline infusions as a potential treatment for ME/CFS.

- The saline trial will use a placebo control and test different compositions, such as saline, dextrose, and Hartmann's solution, with each participant receiving every option in a randomized order every 2-3 weeks.

- Recruitment for the saline project is expected to begin after or concurrently with the meal challenge study, with an estimated year of treatment and recruitment from referrals, Open Medicine Foundation, and Dr. Feinberg's own clinic.

- The saline trial protocol is currently in the early phase of development and undergoing the ethics submission process, with an estimated start date of late this year or early next year.

- The potential of the saline trial lies in understanding the biological and physiological changes associated with symptom improvement and its implications for future infusion-based studies in ME/CFS research.
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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
 
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Sasha said:
I've been paying next to no attention to the OMF for years. Have they made any progress?
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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
OMF website said:
The End ME/CFS and Long COVID Project encompasses the latest OMF-supported and facilitated research conducted within six ME/CFS Collaborative Research Centers (CRCs).
...
The six CRCs are working collaboratively to build a repository of data about ME/CFS and Long COVID. This data is essential to develop diagnostic technologies, understand the molecular basis of the diseases, and uncover effective diagnostic tools and treatments.
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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.



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.
 
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OMF posted an interview with Chris Armstrong @MelbME.



"Neuroinflammation, altered cerebral blood, and dysregulated hormones have all been separately observed in ME/CFS in prior research.

Dr. Armstrong and his team at OMF’s Melbourne ME/CFS Collaboration have designed a study to examine the link between these three observations in people with ME/CFS, Long COVID, and POTS.

The study will use MRI and PET imaging, blood draws, and surveys to characterize neuroinflammation, cerebral blood flow, and hormone levels. The project is currently under ethics review and therefore in the “Study Design, IRB/Ethics Review” stage."
 
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