Recent events show us yet again that we can't necessarily rely on our charities to act in our best interests. Right now, in November 2024, which charity would you donate to in order to best further biomedical research into ME/CFS?
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…
Thanks, Andy. I had no idea! That page says it was published in September this year, so is this a new possibility? I think I should start a new thread to announce it, if so - this is hugely important work and if I had a billion quid, I'd drop it on that lab.
I think so, but I'm aware of it only because another patient (I've forgotten who, sorry) pointed it out to me, I don't believe there has been any kind of official 'launch'.
Open medicine foundation because it’s an international multi investigator multi center organization. https://twitter.com/user/status/1858925658375684385 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/
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.
I used to donate, but they don't publish enough of the work they've done for my liking. I'd be happy to donate to Chris's lab, though, now I know I can.
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.
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.
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.
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.
I donate to ME Research UK, and it's them that I have easyfundraising set up for. They communicate really well about who they fund.
