Hi Firestormm,
I think those are all fair questions but I feel confident donating because, for one thing, the worst that can happen is that a Rituxmab trial doesn't come off but other biomedical research gets funded. With IiME's leaders' research connections for guidance and their need for their family member to get the best treatment, I trust them to spend the money wisely if that's what happens. It's a pretty good worst case scenario. Here's a statement from the LDIFME blog:
http://blog.ldifme.org/2013/06/lets-fund-uk-rituximab-study-for-me.html
The fundraising for the Invest in ME Biomedical Research Fund Rituximab Project will be carried out by Invest in ME and its supporters in Let's Do It for ME as well as others.
Currently details are few as we structure this project and begin the work to make it happen.
Funding
All funds for the Rituximab project will be isolated from the rest of the Biomedical Research Fund.
The Trial
More details will be added here - or in a follow-on page, when we have those details.
How Much Needs To Be raised
This will depend on many factors. As the project evolves we will be able to describe it here.
What Happens With These Funds If The Project Does Not Go Ahead
If the rituximab project does not go ahead for some reason then the funds raised will be transferred to the IiME Biomedical Research Fund to fund other biomedical research projects which are attached to our proposal for an examination and research facility based in Norwich Research park in Norfolk, UK. These funds will only be used for biomedical research into ME.
Invest in ME
Invest in ME is formed from volunteers. There are no salaries and no funds will be used for administration costs. All funds raised will be used in full for financing the UK Rituximab project.
I agree it looks like a premature launch - perhaps they felt pressured to announce how they were going to spend the £100,000 now that they'd raised that target, or were emboldened by what sound like positive results coming out from Fluge & Mella, or wanted to take advantage of eyes being on them in the wake of the conference and the good news about the Norwegian MRC contributing to the Haukeland study.
But I wonder if the donation landscape has changed now for ME. Having seen the success of MEandYou and OMI-MERIT, I wonder if ME charities might now be starting to feel that they'll have more success in getting funds in quickly by asking for support for specific projects rather than hoping we'll just donate into a bottomless pit and trust the charities to choose from research proposals submitted to them. I think MEandYou in particular has changed patients' expectations about what they want and how quickly they want it.
The difference for IiME is that they don't yet have researchers with a fully costed proposal ready to go but they sound confident that they will.
I had the same qualms as you, Firestormm, when I first read about this but, as I said, I think the worst case scenario is a good one. That scenario is no different to donating to a research charity like MERUK or the MEA's Ramsay Research Fund, where you don't know in advance what they'll spend it on, other than that it will be good-quality biomedical research.
Thanks for raising these questions - it's good to get any concerns out in the open because if you've got questions, other people will too and it's good to discuss them.