Open Medicine Foundation (OMF) fundraising

Especially as the basic rate for out-of-work benefits is less than £74 per week. Not many people could give up more than three weeks' income.

There isn't. I wonder if this is due to the collection agency's rules? I'd be surprised if it came from OMF – they know that, for most of us, even a $10 donation means we'll have to go without something that week.

 

Is it clear what percentage the collection agency takes?

 

Is a little open medicine foundation empire a negative? I like the idea.

 

There's also Cure ME.

 

I don't know. I don't doubt their commitment.

 

It's mostly about leveraging existing research. Lots of this research will be happening no matter what, might as well create the logistics so that they work in a way that maximizes their efficacy. In research individual talent only goes so far. What works is plurality of angles and when resources are very limited it's important to find the right balance of trying different things and replicating just enough.

This is the rub: other diseases typically don't have to do that because formal institutions do that work using academic and research funds that are guaranteed over the very long term. Even with all the failures in finding treatments, Alzheimer's research is not about to be shut down. It's only the remaining group of maligned diseases that don't and on privately doing the groundwork this is the first that seems to do it from such a strong academic base (in the sense of having so many tenured and experienced researchers attached to academic institutions but not funded by them).

 

Merged thread

@Ben H created a video "WHY BEN SUPPORTS OPEN MEDICINE FOUNDATION" as part of the 2019 Project for Awesome contest. If you vote for this video then OMF may win funding from this project.

http://www.projectforawesome.com/watch?v=YrbTKd3C41I

Voting is pretty simple. You need to pass a captcha test but no login or giving your name or email.

There is a limited time to vote - voting is open until 11:59am EST on December 8th

PS. Maybe I just haven't found the right webpage but after wandering around the Project for Awesome website for some time I still can't find details on how many winners will be selected, how much money will be awarded, etc.

 

Voted ✅

 

Hi guys,

Thanks so much for posting this. I didn't know this project even existed until a few days ago so I did my best in very limited time. Hopefully OMF can get some of the funding (I have no idea how it is split but I believe OMF were in the top 10 videos watched earlier!).

If you can and support OMF, please vote, as @ahimsa says it's literally a captcha and a button. If your family members and friends support OMF and are able to vote, that would be awesome too. There's a day and a bit left yet so hopefully momentum keeps building.

Thanks so much,


Ben

 

Voted.

 

Done.

Super easy, 1 click.

 

Voted.

Thanks for doing this Ben

 

Thank you guys so much. I think OMF are still in the top 10 with a day to go...


Ben

 

Hi guys,

I thought I'd try and address some points raised here. A lot of the points by @wigglethemouse and @rvallee are spot on, so I don't need to clarify too much.

The 'opening' of OMF in Europe is simply an expansion of what has happened in the US. It's the logical next step and a while back I tried to get an OMF UK set up (unsuccessfully) for multiple reasons. So I'm really glad to see OMF in Europe.

The main reason was the opportunities that it would give UK researchers to collaborate with OMF in the US. I want to see-as a severe patient with my life on the line- everyone working together. The work by Karl Morten at Oxford I find absolutely fascinating, the same for Julia Newton's brilliant muscle work and of course the Biobank team. Imagine if all of these groups were collaborating together. That is my main hope for ME/CFS research-open collaboration between multiple teams. Hopefully with and OMF Europe, we are one step closer.

Secondly it enables businesses to donate and claim back, as has already been mentioned. That means more money to research. I was concerned as @Andy pointed out about the minimum £250 donation for TGT and I sent an email to OMF about this (because there is no way most patients are going to be able to do this) and the response was it was intended for businesses and larger donations. If people wanted to donate smaller amounts and get their money tripled, they could still do that at the usual OMF.ngo.

Thirdly it should enable Amazon smile etc in those countries which is an amazing way to donate 'passively' so to speak if you shop on Amazon.

I really don't like the term 'OMF Empire', mainly because of the connotation of a single monopoly, even if the actual definition isn't quite that. OMF want to work with different teams and encourage diversity in research-this is clear not only from the growing number of CRC's (Stanford, Harvard and Uppsala) but from the Symposiums each year. The amount of projects ongoing is really amazing-in my opinion-and certainly not 'a regression to one approach' @Snowdrop (I know that wasn't a statement but a potential concern of yours), here is a link to current OMF-funded projects across multiple centres and researchers.

You've got to hedge your bets somewhat with ME/CFS research. I always try to make sure when I'm talking about OMF to say 'if you support OMF' because I understand it's a very personal choice. But at the end of the day, it's totally upto the individual who they choose to donate to, if they are able (and that may be one organisation, multiple organisations or none at all), so I don't see how the expansion of OMF to Europe can be a bad thing, for the above reasons and for the fact that if it needed funding (not sure if funding was required) it will have by been by people who want to donate to OMF. As @NelliePledge said, donating is how things are able to happen.

I chose to volunteer for OMF primarily based on 1.) Ron Davis's track record, collaborations and character and 2.) The fact that they are 'open'/share data and do not care about ego, which is not the case for many charities. They just want to get the job done, but it's an almighty task.

I also hugely support Karl Morten, Julia Newton, the ME Biobank and with OMF Europe being announced, hopefully we are one step closer to the amazing researchers in the UK working with OMF. I think I read that @wigglethemouse said that a 'kmorten' was watching Ron's recent talk the other day, so presuming that is Karl (!) hopefully something will happen. I was so happy to see SolveCFS's grants recently and am really excited about Mike Van Elzakker's work and Amy Proal's. I'd love for everyone to work together, and share data. The inner hippie in me coming out, but it's also what I believe is needed to cure this illness.

Apologies for rambling, I'm exhausted and I need some coffee.


Ben

 

Thanks so much for your support guys, I think OMF ended up at number 6 most viewed (out of 350+ I believe)!


Ben

 

Merged thread

https://www.omf.ngo/2019/12/13/2019-year-end-message-stanford/

An End of Year Message from Ronald W. Davis, PhD, and Janet L. Dafoe, PhD

We have accomplished so much with the amazing donations generously given to OMF and we are grateful. We have collected huge amounts of data in our Severely Ill Patients Study, which has yielded lots of information and hypotheses. We have developed 4 promising potential diagnostic tests, including the nanoneedle, and we are working on several more. We have published a paper on Red Blood Cell Deformability. We have developed the Metabolic Trap hypothesis, made much progress on testing it, and published it in a theoretical paper. We have begun collecting data on both toxic heavy metals and essential metals, which is beginning to suggest alterations that may contribute to symptoms. We have collected myriads of multi-omic data on families. These studies have already shown us a large number of molecular alterations in patients, but science is slow, and frustratingly underfunded. The rate-limiting step is always funding. We could do so much more and get answers faster with more funding. We have written many grants to NIH, but so far only one has been funded. Don’t believe anyone who says NIH isn’t funding ME/CFS because they don’t get good grants!...

 

The list of projects is impressive.

• We continue to analyze the Severely Ill Patients Study data, which is a huge job and continues to give us new insights. We are working on publications of this data.
• We are continuously comparing all our diagnostic tests with each other and with Naviaux’s metabolomics profile in a complex “bake-off.”
• We have ideas about new diagnostic tests that we want to develop and test.
• We are developing a high throughput version of the nanoneedle. Once we have a high throughput device we will be able to discover what component in the blood is causing the nanoneedle signal. This component could be causing lots of the symptoms. Once it is identified, we may be able to inhibit it or remove it from the blood. We will also be able to begin testing FDA approved drugs. These projects also need funding.
• We need funding to develop a version of the nanoneedle that could be used to diagnose patients.
• We would like to generate brain cells in culture from patients, using stem cells, so we can test the metabolic trap in these cells. If we can put these cells into a metabolic trap, we will be able to investigate methods to get them out of the trap.
• We want to continue developing tests for pathogens, including RNA viruses (e.g., enteroviruses), parasites and funguses.
• We would like to expand our metal analysis to not only test hair and blood, but also measure the amount in individual cells.
• We have discovered a number of metabolites that have never been measured before in patients that may be directly connected to major symptoms. We would like to initiate a broader metabolomic study to investigate this.
• We are very aware that mold is a major factor in this disease for many patients. We want to investigate this. We have a lead on possible partial funding, but need more so we can hire an expert for this important project. We need support for at least two years of salary.
• We want to test patients before and after CCI surgery in order to get an idea of what is happening at a molecular level in these patients and how it relates to ME/CFS.

 

The sorts of figures I have seen for NIH funding in research years suggest the approval rate for ME/CFS is around the average possibly even a little above average. It’s an unfortunate fact of life that the NIH doesn’t fund all good applications across the board, just like similar bodies in other countries. It’s a reason privately raised money is important to ensure interesting leads get followed up.