OMF, Ron Davis and James "DNA" Watson launch END ME/CFS Project

[John Mac]

Prof James Watson is to auction off the Nobel Prize medal he won for the discovery of the structure of DNA.
The auctioneer says the medal is the first to be auctioned by a living recipient and could fetch between $2.5m (£1.6m) and $3.5m (£2.2m).
Prof Watson said part of the proceeds would go to the University of Chicago, Clare College at Cambridge University, Cold Spring Harbor Laboratory, Long Island Land Trust and other charities.
http://www.bbc.co.uk/news/science-environment-30209759

Let's hope the END ME/CFS also benefits

 

[Drass]

Is there any update about this initiative? Does anyone knows anything about it? I just got an email about donating them to support the upcoming research in 2015 but they are not providing any info about how much they have already, what is their roadmap etc...

 

[Sasha]

Is there any update about this initiative? Does anyone knows anything about it? I just got an email about donating them to support the upcoming research in 2015 but they are not providing any info about how much they have already, what is their roadmap etc...

They've got a newsletter that you can sign up to - I don't know if that will have more info.

I think it would be reasonable to email them and ask them your questions. I think it would be helpful for them to understand what patients want to know - if they put that kind of information out, it could help them get more donations.

 

[Bob]

I think perhaps they're still setting themselves up, and finding their feet.

This is their newsletter archive; the latest seems to be from Oct 2014:
http://www.openmedicinefoundation.org/news-updates/links-archives/

They post regular messages on their Facebook page, but it doesn't look like they've posted any substantial news recently:
https://www.facebook.com/OpenMedicineFoundation

 

[BurnA]

@Jonathan Edwards just wondering if you have any comments to make on the openmedicinefoundation ?
Do you know if they collaborate with your group or any of the other research groups in Europe ?
Do you think they are focusing on the right topics / areas ?
If you had the resources they seem to have would you do it differently ?
I am really just curious about your thoughts because your opinions are always honest and frank and a breath of fresh air, and therefore interesting !

 

[BurnA]

http://www.openmedicinefoundation.org/mecfs-severely-ill-big-data-study/

Not sure if this is discussed elsewhere but looks like phase 2 of the big data trial will focus on less severely ill with the aim of comparing results. Phase 1 funded but they are looking to find phase 2.