Open Medicine Foundation (OMF)

https://twitter.com/user/status/1445050675113512961


https://www.whitneydafoe.com/mecfs/?post=my-38th-birthday-fundraiser

https://www.spotfund.com/story/c0668b8a-91c3-4934-a40f-9f3dbcb8967a?SFID=FindaCureForMEcfs

 

https://twitter.com/user/status/1442507221913387008

 

From Whitney's blog:

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.

 

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.

 

I’m confused: who are you suggesting should fund their research?

 

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.

 

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.

 

I thought this part was interesting:



I don't really know how OMF works, but this seems to suggest that they have a lot of cash on hand, but are not spending it... for some reason or another?

 

I imagine they have commitments to research projects that could extend beyond one year.

 

https://twitter.com/user/status/1449084672319922186

 

https://twitter.com/user/status/1450476444581339137

 

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

 

What is " a full night of sleep"?

 

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.