Open Medicine Foundation (OMF)

From Whitney's blog:
He believes he will figure out the cause of ME/CFS. Yesterday he had dinner with Rob Phair, who works with Ron at Stanford. He is a pragmatic minded person, not a blind optimist. Janet asked him if he thought they would ever figure out ME/CFS and he said "you know what, I really think we are going to crack this".
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Excellent! Now how about they start sharing that optimism with the rest of the world so maybe they can stop relying on Facebook fundraisers to fund their research.
 
Jaybee00 said:
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What do you most hope to convey by writing a story where the protagonist has ME/CFS?
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I hope that people with ME/CFS feel seen. We must maintain hope with this disease, and I think it’s incredibly powerful that this book unapologetically affirms ME/CFS as a real disease.

I’m also excited to educate healthy folks about ME/CFS. Often in ME/CFS advocacy, it can feel like screaming into an echo chamber. You post an article on Facebook and who reads it? Other sick people. You start a fundraiser, and who donates? Other sick people. Books, however, are an opportunity to place other people in your shoes. I hope that “The Matzah Ball” makes life easier for sick people. If one reader writes to me to say that someone in their life “gets it now”– then all the hard work has been worth it.
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https://www.omf.ngo/new-novel-features-main-character-with-me-cfs/

I listened to the book excerpt on Amazon. Looks to be a Jewish Rom Com. This could be a good way of casually slipping some info about ME into the consciousness of a healthy audience who wouldn't otherwise pay it any attention.
 
5vforest said:
Does OMF not publish annual reports? Many (most?) nonprofits usually release a nicely-formatted PDF each year with high level overviews of their activities, impacts, financials.
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In short, no, they don't appear to.

They have a "Milestones" page, https://www.omf.ngo/omf-milestones/ - one of the things noted there is that $4.5 million was raised in 2020.

And they have a "Financial Information" page, https://www.omf.ngo/f-info/, with gives their audited financial statements from each year.
 
There is one thing i really don't understand about OMF.

They seem really convinced about the metabolic trap hypothesis, and seem to have spare cash, so why don't they recruit a couple hundred additional patients (or more) and test them for the IDO2 mutations, like they said they would in 2019? It wouldn't be particularly expensive, and i'm sure the US ME/CFS specialists they are in contact with would be more than happy to provide those patients, after having vetted them thoroughly to make sure they actually have ME/CFS and not some other undiagnosed disease. If all those extra 200 patients also have the mutation, then that would be a huge thing, and it would for sure attract attention from external research groups who would then start working on this hypothesis (even long COVID research groups, who have billions in funding at their disposal). It would also make it a lot easier to get the NIH to approve the grants, at least as long as they were related to this hypothesis (since they complain about the NIH rejecting everything).

Instead of doing this, they spend money on other projects related to the metabolic trap (like the yeast stuff) and say that things are slow because NIH doesnt fund them or because they have to figure out the protocols because they are doing things that haven't been done before. But they have free (available) money laying around and science is a collaborative effort. Why not prove that ME/CFS patients have this metabolic trap so that the world can start working together to figure out how to cure it? Have they even published the IDO2 genetic data of the 70 or so patients they are dealing with now (they said all of them have an IDO2 mutation)? if they don't publish nobody would care to work on this. Publishing is the way to tell other researchers "hey, this deserves attention".

I really don't understand. There are hypotheses that are really hard to prove, like the neuroinfiammatory one for example. This is so simple. All they need to do is gather a relatively large number of patients and do a simple genetic test. Why don't they do it?
 
Merged thread

from email
Open Medicine Foundation (OMF) is thrilled to announce that we are funding a new collaborative research project! Conducted across the OMF Collaborative Network, this research initiative will investigate sleep disturbances in ME/CFS.

About the Study



One required symptom for diagnosing ME/CFS is non-restorative sleep, that is, waking up feeling exhausted after a full night of sleep. This might suggest that sleep dysfunction could be involved in the ME/CFS disease process. New, more refined tools, such as high frequency recordings of an electroencephalogram (EEG), a test that detects electrical activity in the brain, could potentially uncover significant sleep dysfunctions in ME/CFS.



It is possible that inflammation of the Central Nervous System (CNS) plays a role in the symptom of unrefreshing sleep. Direct evidence for CNS inflammation in ME/CFS was revealed in a 2014 report, which demonstrates that microglial activation is one of the main cell types involved in neuroinflammation. This activation was seen in the thalamus (structure in the center of the brain) in nine ME/CFS patients.



Despite the fact that ME/CFS includes symptoms of profound fatigue and cognitive dysfunction or “brain fog”, no CNS biomarker, sleeping or brain biomarker have been identified to date.

Methods

The study will examine EEG frequencies (electrical activity occurring in the brain) of sleep and wakefulness in ME/CFS patients. Concurrently, Dr. Jonas Bergquist will evaluate cerebrospinal fluid proteomics at the Uppsala Collaborative Research Center. Dr Bergquist hopes to identify orexin (a neuropeptide that regulates arousal, and wakefulness) and related proteomic inflammatory markers in patients who have developed ME/CFS.

What does this study mean for ME/CFS patients?

This project will help us better understand how to eventually treat devastating sleep deficiencies and fragmentation that is associated with ME/CFS.
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I don't know the definition, I am only commenting that a nights sleep used to be considered as 8-9 hours, of sleep, but now seems to be considered to be 7 hours, in bed.

So in the last 20 years evolution would seem to have acted to make everyone need less sleep.

Which is quite a remarkable rate of change, and clearly has nothing to do with trying to suck every last minute of unpaid overtime out of employees.
 
Sleep studies are welcome but not a lot of info on the methods here. Will they be studying different phenotypes separately? Some of us have hypersomnia, others assorted types of insomnia, and for some sleep problems only show up - with a vengeance - after overexertion. Throwing all of that into one big pot may result in the pooled findings looking 'normal' even if each and every individual's sleep is anything but.
 
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