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.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".
What do you most hope to convey by writing a story where the protagonist has ME/CFS?
https://www.omf.ngo/new-novel-features-main-character-with-me-cfs/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.
I’m confused: who are you suggesting should fund their research?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.
In short, no, they don't appear to.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.
I imagine they have commitments to research projects that could extend beyond one year.I thought this part was interesting:
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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?
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.