See Also: Which ME/CFS charity would you donate to right now for biomedical research? And: What are the best UK charities for ME? Following my receipt of a 50 USD charity gift card in a giveaway which only works with US Charities, I am left wondering what charity to spend it on. In the list of top 5 ME/CFS charities to donate too in my head, none of them are in the US, so I’m a little stumped here. A couple thoughts Solve ME/CFS seems really good w.r.t. advocacy and lobbying the US government, which in my opinion is very relevant, [edit: the following was imagined by me: however, they’ve funded some dodgy alternative medicine studies that make me sceptical.] MEAction seems excellent but I’m more looking to fund biomedical research or government lobbying, than grassroots initiatives. OMF are really cool, but I’m not very happy with the fact they often don’t publish null results, and it sometimes feels like they work in their own ecosystem with little interaction from the rest of the ME research world. Others: Patient Led Research Collaborative? American ME and CFS Association? The Sick Times? Body Politic (or did they merge with MEAction)? Who would you donate too and why? (I’m leaning towards half half Solve ME and OMF, but am super unsure and very open to ideas)
This year I gave all my donation to OMF. Another option is Simmaron https://www.simmaronresearch.com/
I remember getting a little heartburn about one of the things Solve funded, but I don’t remember what it was. Don’t necessarily agree that OMF is closed off—at their non-public research meeting they tend to invite a variety of researchers but I was surprised that the Norwegian group wasn’t at their last 2 meetings. (ETA Actually this is a Stanford meeting, not an OMF meeting). There are some criticisms of the blood preservation techniques of Simmaron in their BH4 studies—I think @wigglethemouse knows more about this.
Lots of the smaller pilot studies the Solve ME/CFS Initiative have funded have gone on to get larger grants (usually with the NIH) so I think they do important work.
I think it was some stem-cell thing, the therapy being basically to stick the cells from your right arm into your left arm, which is an alt med treatment kind of thing that says it will cure 100 things but has RCTs showing it works for none. I’m possibly imaginging or misremembering this because of brainfog so don’t take my word for it. Edit please scroll down I did indeed misremember
I think my pick of the US national organisations right now would be Solve ME/CFS for the reasons you say, despite my considerable concerns about some of the research that they have funded. Emily and the team there supported our Cochrane campaign, indicating that they understand those issues and are willing to stand up and be counted.
Thanks for the input everyone. I’m going to go with solve ME. According to Charity Navigator, three employees of the OMF (CEO, CFO, CDO) earn a decent amount over 200’000$ (US) per year which feels slightly excessive especially when taking donations from people in precarious situations. Charity Navigator Page (Scroll to bottom)
What dodgy studies have they funded? I did a quick search but found this instead: https://meassociation.org.uk/complementary-treatments/ I'm kind of disappointed that the ME Association weren't more critical of alternative medicine, I got the feeling they were trying to be neutral not to upset believers.
I digged deep because I was having trouble finding it, and it looked like I had indeed misremembered. They helped recruit and hosted webinars for a dodgy “stem cell” study, but they never funded it. See this thread https://www.s4me.info/threads/usa-t...ell-trial-hope-biosciences.33379/#post-475832
But this is more of advocacy rather than research, which is fine, if that’s the goal of your contribution. I gave to Solve at one point but got the heebee-jeebees based on their funding of questionable research.
