Which ME/CFS charity would you donate to right now for biomedical research?

Probably WE&ME since they seem to be good at making an impact and they are close to me geographically. Plus they are a charity that seems to consistently produce very Severe ME informed research and advocacy.

I’m kind of intrigued by donating to Ron Davis’s lab, but he’s obviously ageing a lot and I wonder what the continuity plan is once he has to step aside…
 
Open medicine foundation because it’s an international multi investigator multi center organization.

https://twitter.com/user/status/1858925658375684385


Yann04 said:
I’m kind of intrigued by donating to Ron Davis’s lab, but he’s obviously ageing a lot and I wonder what the continuity plan is once he has to step aside…
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I think he is aging at the same rate we all are! Laurel Crosby can definitely spearhead the BH4 work, and if Ron were to leave us, the various collaborations (University of Utah?) would continue.

https://www.omf.ngo/meet-laurel-crosby/
 
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Jaybee00 said:
think he is aging at the same rate we all are! Laurel Crosby can definitely spearhead the BH4 work, and if Ron were to leave us, the various collaborations (University of Utah?) would continue.
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Because the majority of donations to Ron’s Lab seem to go towards expensive equipment. Do we have a guarantee that equipment will keep on being used for ME research in the next decade, that’s what I wonder.
 
Kitty said:
I used to donate, but they don't publish enough of the work they've done for my liking
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Honestly, I'd much have a treatment than a lot of publications. Treatments are the correct metric (for me), not publications. Preparing high quality manuscripts for publication takes a lot of time, and is not always the best use of their time, especialy if there are not significant findings. Contrast this with someone like Ziyad Al-*ly, whose reason for being seems to be publishing endless quantities of articles on Long Covid, which in my opinion do not move the needle forward at all, but generate positive publicity for him.
 
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Jaybee00 said:
Honestly, I'd much have a treatment than a lot of publications. Treatments are the correct metric (for me), not publications. Preparing high quality manuscripts for publication takes a lot of time, and is not always the best use of their time, especialy if there are not significant findings. Contrast this with someone like Ziyad Al-*ly, whose reason for being seems to be publish endless quantities of articles on Long Covid, which in my opinion do not move the needle forward at all, but generate positive publicity for him.
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I get what you’re saying but it should be a priority to share all the data we have, even negative. No need to be like Al-Aly who consistently publishes in prestigious journals, but it shouldn’t be hard to get a grad student (who will often jump at the opportunity) to write something up to publish in a lower tier journal, maybe even something completely open like Qeios.
 
Yann04 said:
I get what you’re saying but it should be a priority to share all the data we have, even negative.
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Particularly negative results, I'd say. It may save someone else wasting time on the same approach. Also, if the methods and results were published, someone else might see an issue with the way samples were taken or processed (or whatever) and repeat the experiment with that corrected.

If there's no communication or publication, nobody knows what's going on. OMF have had something of a habit of talking ideas up, which then vanish without trace. It's not even clear whether they pursued the idea, let alone what the outcome was. I'm sure their intentions are good, but the lack of information isn't helpful.
 
Kitty said:
If there's no communication or publication, nobody knows what's going on. OMF have had something of a habit of talking ideas up, which then vanish without trace. It's not even clear whether they pursued the idea, let alone what the outcome was. I'm sure their intentions are good, but the lack of information isn't helpful.
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Yes. For an organisation that’s mission includes open data sharing, you’d have expected them to be a little more data sharing outside their research network too.
 
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