OK, so the crowdfund team has been listening, and I'm going to try to address the major points that have been raised in this thread. Apologies if I don't respond to every point raised. The answers might not satisfy everyone, but we hope they will shed some light on the situation.
I think possibly our biggest selling point is Dr Lipkin himself, and so that's where much of the crowdfunding emphasis has been during the campaign. Having Lipkin involved in ME/CFS research is a strong, simple and attractive message. As others have said in this thread, Lipkin's involvement in ME/CFS could potentially be absolutely transformative for the field. It seems almost impossible to over-sell Lipkin's scientific credentials. Also, of course, there's Dr Mady Hornig, who is also a world-class researcher and who seems to be very popular within the community.
But we've also attempted to explain the research itself to people who are interested, in both simple and detailed terms. If people have been following the campaign for a period of time then (for anyone who wants to read about it) we have attempted to explain the nature of Dr Lipkin's proposed research, and Dr Lipkin's overall ME/CFS research strategy, and his scientific credentials. We really have put a lot of work into making information available about these issues, in simple and complex terms.
Not all of our promotional work (e.g. the shorter crowdfund messages that get posted on
Facebook and
Twitter) gets posted onto the forum thread, so perhaps some forum users have missed some of our work. Facebook is our main crowdfund portal, along with Twitter, but I hope we post all the
essential info onto
Phoenix Rising.
As some people have said in this thread, perhaps there is no simplistic message to promote specifically for this particular research study, except to say that Dr Lipkin is looking for answers to ME/CFS in the gut microbiome, as part of a wider and comprehensive research strategy for ME/CFS. (It can't be promoted in the same way as the Rituximab trial - That was a very simple and straightforward sell - If successful, then you've got an immediate treatment for ME/CFS - Whereas Dr Lipkin's research program is extensive and complex. But we've made huge efforts to simplify the promotional message.)
Dr Lipkin's microbiome study itself includes looking for any microbes (viruses, bacteria, fungi) or populations of microbes that may play a part in precipitating or perpetuating ME/CFS, and it includes a serology (antibody) sub-study, and it encompasses a study of cytokines in the same patients. All these results will be correlated for each patient to look for patterns of immune dysregulation. It's exploratory research, with no known outcomes, and it's part of an overall research strategy. The gut microbiome floats some people's boats more than others; we find that many of our supporters are very excited by the study, whereas other aren't so excited about it. But the study has to be seen in overall context, and we have done a lot of work explaining the context (i.e. Lipkin's background, intentions and ME/CFS research strategy) as well as putting out regular
simple catchy crowdfunding messages.
His team is also carrying out proteomic and metabolomic studies, as well as a hunt for pathogens in blood plasma, blood cells and spinal fluid. And he's doing more research, details of which I can't remember off-hand. (You can find many of the details in
our blog series.) Dr Lipkin has even funded some research himself, for his own scientific curiosity, and to get things moving faster.
Much of the crowdfund campaign work has been carried out on our social media outlets where more than 4000 people follow the
Facebook account, and more than 600 follow on
Twitter. We've had hundreds of people reposting each of the project's blogs on Facebook, with a lot of positive feedback. So there is quite a bit of interest in the project. We've also been mentioned in national newspaper articles and prominent blogs, and we've had some authors/writers and journalists getting involved, or mentioning us. We've
steadily attracted more and more interest in the project, and steadily increased the numbers of our followers, over the months.
I think there are complex reasons why the project hasn't gone as viral as we'd all have hoped, or why the level of interest hasn't translated into donations. Many fair points have been raised and discussed in this thread. Yes, PayPal and Text Giving etc., would have made a difference, but I'm not sure that it would have increased the amount of donations five-fold. So it's not the whole answer.
The small crowdfunding team has been flat-out doing an immense amount of work behind the scenes, for months now. (Just doing the daily admin tasks is a full-time job, and exhausting - But we do so much more than admin tasks.) Columbia are also doing work behind the scenes, trying to attract funds. Some large donations (I think the largest to date is $30,000) have been donated to Columbia, and are included in our crowdfund total. We know that more donations are in the pipeline, or have been pledged.
So, the detailed crowdfunding strategy might not have been perfect, in all areas, but it seems to have quite a wide reach considering the 4000 followers on Facebook. The Facebook page has been very active, and the
Phoenix Rising forum thread has been viewed more than
50,000 times! (Yes, that's the correct number of zeros!) Considering the limitations on health and the small number of individuals running the project, it's quite an achievement. I think Marie Gjerpe said that no one should consider running a campaign like this unless they are perfectly healthy, as she knew what an enormous amount of effort is involved in the day-to-day admin let alone the big-promotional drives. Nearly all of the volunteers have experienced health set-backs (some quite major) since starting the project.
Columbia is a huge organisation, and I think it's correct to say (as has been pointed out in this thread) that they aren't geared up for small donations from crowdfunding projects. They're geared up for one-off donations. Dr Lipkin's team have little say over the way the overall university bureaucracy is run. We have pushed for paypal to be available, and have passed on supporters' comments about wanting Paypal, but it's simply not an option for Columbia University at the moment.
To by-pass this issue we would have had to set up a free-standing non-profit organization to channel the funds via PayPal/Just-Giving/Indiegogo/text-giving etc to Columbia. But after careful consideration, early on, the team decided this was too much to take on. Setting up a non-profit is a complex process, which would also have involved legal niceties/complexities re the relationship between the crowdfunding team, the donors and Columbia. We also didn't have a team member resident in the USA who was familiar with US non-profit organisations and tax law.
We know the lack of paypal has made a difference to the campaign, but, as I pointed out above, paypal wouldn't have increased the amount of donations five-fold. So there is more to it than simply introducing paypal.
If anyone wants to create videos for the project then please do, and we'll consider promoting them prominently. (We have appealed to the project's supporters to create personal videos previously.) Yes, a high-profile video from a patient or celebrity would have been nice to have run along-side Dr Lipkin's video.
If anyone would like to create text for the project, that we can promote (e.g. a lay-person's guide to the research), then we'll consider promoting it. We feel that we have done an immense amount work on this already, but we're always open to new material.
If anyone has any other specific contributions that they'd like to make then we'll consider promoting anything that is generated from this thread.
If anyone would like to write to newspapers or celebrities, in a personal capacity, then please do.
Thanks everyone for your interest and enthusiasm. We recognise the disappointment that the project hasn't gone as viral as we'd all have hoped. And we're listening to all your comments. Be assured that we are aware of the issues raised. Any perceived missing elements of the campaign isn't for a lack of awareness. It's all to do with capacity, and/or administrative hurdles. However, we think that perhaps there has been
much more awareness-raising about the project on social media, on various blogs, and in the general media, etc, than this thread suggests. But there's always room for more.
Dr Lipkin has said that his grant applications, for the full gut-microbiome study, were turned down twice by the NIH, on spurious grounds (my words, not his - but that's what he meant.) (And, unlike regular ME/CFS researchers, Dr Lipkin is not used to being turned down! He was clearly frustrated and irritated about it.) That's partly why the crowdfunding started.
The crowdfund campaign will be wrapping up at the end of the year, after we've had a good last push for donations leading towards Xmas.
We have some extra information to come, with regards to what will happen after the end of the year. We're just finalising some details with Columbia.