Dr Ian Lipkin's $1.27m gut microbiome study - crowdfunding campaign - news and updates

[Sean]

If we are trying to get more small donations, the fewer delays/inconveniences the better.

Agree. The donation process via Columbia's website is too involved, asks too many details, and will turn off quite a few people.

It is manageable for somebody setting up a regular automatic payment, but for one-off or irregular donations it is not so friendly.

We need an easy, quick, (and of course safe/reliable) method for those kind of donations.

 

[DanME]

I think, nearly 100.000$ is not at all a bad result (the Lipkin study is just extremely expensive) What strikes me, that only 500 people participated so far. That is not enough.

It seems, we cannot use kickstarter. So we have to use the existing page and improve it. Maybe in the long term we could transform the site to a general crowd funding page for promising underfunded studies for ME/CFS (the authors should at first try to get public funding of course and don't misuse us as a money (or honey pot). So we wouldn't have to start from the scratch all the time and could react flexible.

A PayPal Butten is a must. A donation button comes with the costs of 1,2% + 35Cents of fees. So if somebody donates 20$, we would loose 50 Cents. That is acceptable for generating convenience. If somebody would donate 5000$, we would loose 60$.

To get some nice clips from Ryan Prior or Jennifer Brea is a wonderful idea to show that we are truly sick and need help. With people it is a lot easier to identify.

I think, we are the first patient group, which tries to fund research projects. So it is all new territory. But it worked really well so far. MeAndYou was a huge success and later the government filled the gaps in funding. The Retuximab study in the UK is nearly funded as well. Funding the documentaries worked fantastically.

We should not give up, but use the all the possibilities of the internet age!

 

[Bob]

Hi, from the team

Thankyou so much for your passion and keenness. We are working away on up coming projects and Columbia are working very hard on things that we have some triple fingers crossed about. We want to reassure you that Columbia are busting a gut over this and desperate to make this happen. The suggestions here are all great and believe it or not behind the scenes these are being worked on and problem solved in some way. We are just unable to have Kickstarter or paypal which is a real pity but we are looking at some other possibilities. Also, lots of things are being worked on that haven't been suggested here and we can not say just in case it doesn't pan out. Keep throwing your thoughts out there folks we appreciate them and there has been some we have thought we could do. We have also had contact with people who know how to work campaigns similar to this.

If there is anything specific you would like to do yourself for the project let us know, of course we are happy for people to go and do things and we would try and help. Because our team is very small we have to stick to biggest priorities that we have but we do not wish to hold anything or anyone back from helping and promoting.

Right now Microbe discovery project needs your help for a few things and we hope people on here can or would help us with these specific tasks.
Email: microbediscovery@gmail.com .
Subject title in the email, please put "donation message" or "my story".

1)We need donation messages please. You can be anonymous, just request that at the bottom of your message. Video messages are also extremely welcome if brave people are up to it!
If you are wanting to for ease feel free to drop a donation message on this thread.

2)We need a person on FB who can share posts that sometimes need cut and pasted form Microbe discovery face book page to groups because FB has changed and does not share to everybody who likes the page. Please email us if you are wanting to help with this.

3)We need your stories to publish and they can be in written form and anonymous. Again video of people telling their stories is also extremely welcome if they were brave enough!
As a guide and so its not too long for people we have set out some things to help people do this.
Please include if you can and these are optional:

Age
What occupation you used to do.
How long you have been ill.
How and where you got ill.
How has it affected life and how it continues to. Not too long
How affected you are now functionally.
Tell us why you have donated/ keen on this research.

The above things are needed for this phase of the campaign and we are really hoping that people might help us out with any of these. Thanks everyone!

 

[Sasha]

We need donation messages please. You can be anonymous, just request that at the bottom of your message.

I'll start this off - I made a donation a few days ago and don't like to deal with FB so this is ideal for those of us who'd like to support the FB page with messages without posting there directly!

Here's my message:

I've had ME/CFS for nearly thirty years and the arrival on the scene of a scientist of Dr Lipkin's calibre is unprecedented. We should grab this opportunity and get this study funded! I've been donating every month since the start of the campaign and just made another donation.

Sasha​

 

[SB_1108]

Why is paypal not an option?

Forgot to include my statement...

I choose to donate because I have felt (since my initial days of developing CFS) that I had some type of bacterial/parasitic infection. My digestive symptoms are the most severe out of all my other issues. Regardless of whether or not the study finds a pathogen as the culprit for our symptoms, we should not sit and wait for the government to fund research considering they believe its all in our heads.

 

[Bob]

The situation is that Columbia university won't accept PayPal because of security concerns.

It might be possible at some point to set up a charity-giving website (similar to kick-starter but for non-profits and with lower fees) but Columbia aren't very flexible about this sort of thing because their financial processes are centralized, and I get the feeling that they are not used to facilitating crowd-funding projects.

A potential option is to set up a charity-giving website account on our own, but we'd be liable for income tax unless we can channel the donations via a non-profit organization. We're working on these ideas but they're complicated and we're nearly all unwell at the moment, so progress is slow.

If anyone has any easy solutions then we're listening.

Thanks for all the comments and discussions. Please keep them coming. We find all the discussions helpful even if we don't respond to everything.

 

[Bob]

BTW, we've always had fast and slow weeks, in terms of donations coming in. Donations come in in bumps and starts. Usually they increase in frequency after we produce blogs, or other people write blogs about us, and after any media coverage. We're always working on getting further media coverage, and we're looking towards multimedia promotions such as producing videos. What we can get done is all based on the size and health of the team. More volunteers are always welcome.

Raising $100k is a huge achievement in itself, by the community, and we're on course to raise much more than that by year-end. I'm quite amazed that we've already raised this much, despite the project's relatively low profile. Donors have been very generous.

Even if we raise a fraction of the total needed for the full study, it will still enable Dr Lipkin to carry out a new piece of research so it will be a major result.

But, yes, it would be nice if lots more patients would contribute, even if they can only afford $1 or $10. Even small donations demonstrate to Dr Lipkin the level of support that he has in the community.

 

[Esther12]

re paypal:

Could there be able to be another organisation, that already has charitable status, and sets up a sub-account for donations to Columbia, so allow paypal donations to that, with the money then being transferred on to Columbia?

(I don't really know anything about the law in this area, so this could be a totally stupid idea).

 

[Bob]

My personal thoughts about Lipkin...

For me personally, I'm deeply excited by Dr Lipkin's research plans. I can't quite believe that we have someone of Lipkin's calibre taking such a keen interest in ME/CFS, along with such mega research plans.

The proposed gut microbiome study is complex, cutting-edge, multi-faceted and very interesting. It includes a study of cytokines, sequencing of pathogens, and a serology investigation (looking for antibodies.) Even if the answer does not reside in the gut for all of us, I think the study has the potential to throw up some unexpected results that could lead ME research in an unexpected direction.

Lipkin's already got intriguing results from a soon-to-be-published cytokine study, and loads of other exciting research planned. e.g. proteomics, metabolomics, RNA sequencing, a pathogen hunt via high-throughput sequencing of blood cells. And he doesn't seem to be intending to stop there. He's going to follow any leads that he gets, as long as he can get funding.

For myself, it's a no-brainer. I think that every small or large donation is a demonstration of our support for Dr Lipkin, and in my opinion, I think we should do everything in our (very limited) power to keep Dr. Lipkin involved in ME research, and to show him our support, for the following reasons:

• The gut microbiome is a fascinating area of research, but it's just the start. Lipkin's got huge plans for CFS, if he can get the funding.
• Dr Lipkin really is a world-class scientist. He knows what he's doing. If he finds something, then it will be difficult for governments and health agencies to dispute it. (And he's already found abnormalities in his cytokine research.)
• He's really interested in CFS. I get the feeling that he really wants to find answers, and believes that he can. He's currently got about 6 different CFS research projects underway.
• He's already got some results to publish - the cytokine study.
• Governments will find it difficult to refute or ignore his findings. And he will follow-up any findings himself until he gets answers.
• He's got connections, and everyone takes him seriously.

He's taking this illness very seriously, and he's approaching science in the way he knows best, which is in a world-class fashion! The more I hear about his research and plans, the more I become convinced that his research will throw up some answers. Perhaps more answers than we've ever had before in ME/CFS.

The crowdfunding effort in itself will further highlight ME/CFS and bring us well-needed attention. We've already been mentioned in media articles, and we hope there is more media stuff to come yet. With patients working on the project, and regularly interacting with Dr Lipkin's team, this has also given Lipkin a personal reason to invest in the illness. I think it's given his team an added impetus to reach out to promote this crowdfunding project. Dr Lipkin's team is working behind the scenes to attract funding, and to promote the project, as well as our team. So, whatever happens, this project is already a success and has already made a difference. I hope the fruits will show more as we head towards the end of the year.

But I know I'm preaching to the already-converted on this thread!

 

[Bob]

re paypal:

Could there be able to be another organisation, that already has charitable status, and sets up a sub-account for donations to Columbia, so allow paypal donations to that, with the money then being transferred on to Columbia?

(I don't really know anything about the law in this area, so this could be a totally stupid idea).

Yes, there is possibly potential for this. It's something that we're thinking about.

 

[geraldt52]

For me personally, I'm deeply excited by Dr Lipkin's research plans. I can't quite believe that we have someone of Lipkin's calibre taking such a keen interest in ME/CFS, along with such mega research plans...

But I know I'm preaching to the already-converted on this thread!

Reading your post, Bob, I couldn't help but think that this is exactly what we need a broad set of patients to hear. But how?

Thinking out loud, is it possible that we could use our current CFS doctors to leverage the number of sick people that each of us could reach. Almost all of us see a doctor for CFS, if for no other reason than support for disability claims, and I'm thinking those doctors might be agreeable to giving a handout to their other CFS patients, or maybe having a handout sheet available and on display in their waiting room. I'm nearly certain that my doctor would agree to it. I know that he has other patients with CFS, but I don't know them, and have no way of knowing who they are. If I could leave some sort of handout in his office perhaps we could reach them. They're certainly a captive audience, as they sit and wait with nothing else to do!

To minimize the cost and work for the team, any handout could distributed here, or the Microbe Discovery Project website, in electronic form, and we as individuals could print out copies to place with our doctors. Facebook and Twitter are not my thing personally, but they might be really useful in recruiting patients who could twist their doctor's arm and get some handouts out there.

 

[Esther12]

Yes, there is possibly potential for this. It's something that we're thinking about.

Well done even understanding what I meant Bob - I got confused just typing it out, never-mind arranging it.

 

[Bob]

Well done even understanding what I meant Bob - I got confused just typing it out, never-mind arranging it.

lol, it's best not to think about what we're typing... that's when the confusion sets in!!!

 

[Bob]

Reading your post, Bob, I couldn't help but think that this is exactly what we need a broad set of patients to hear. But how?

Thinking out loud, is it possible that we could use our current CFS doctors to leverage the number of sick people that each of us could reach. Almost all of us see a doctor for CFS, if for no other reason than support for disability claims, and I'm thinking those doctors might be agreeable to giving a handout to their other CFS patients, or maybe having a handout sheet available and on display in their waiting room. I'm nearly certain that my doctor would agree to it. I know that he has other patients with CFS, but I don't know them, and have no way of knowing who they are. If I could leave some sort of handout in his office perhaps we could reach them. They're certainly a captive audience, as they sit and wait with nothing else to do!

To minimize the cost and work for the team, any handout could distributed here, or the Microbe Discovery Project website, in electronic form, and we as individuals could print out copies to place with our doctors. Facebook and Twitter are not my thing personally, but they might be really useful in recruiting patients who could twist their doctor's arm and get some handouts out there.

Well, that's an excellent idea, and as it happens, we do have such a handout for exactly that purpose...
http://www.microbediscovery.org/download-center/

I think we haven't publicised this yet, because we're finalising a second design.
One will be a poster and one is a flyer.

 

[Aileen]

I look at the thoroughness of Lipkin's approach and can't help but wonder if a similar approach might work for some other complex illnesses where the cause is unknown. I'm thinking about diseases like Lupus, MS, autism, Parkinsons.

Some patients are obviously in a position to ask Dr. Lipkin or someone on his team about this. Let's say that this gets funded and turns up something useful, either cause, biomarker, or just understanding a new piece of the puzzle.

Could this be used as a sort of template? Hey, it worked for them (ME/CFS). So now we (lupus, autism etc.) should be able to get funding to do the same thing because now there is a precedent. And a nice little roadmap of how to do it, and do it properly.

Assuming the above is true, would we not be able to interest some of these other illness organizations in helping with this crowdfunding project. Since everything but the money is in place, we could be the "test case" that has the potential to open the floodgates for everyone if it works.

I'd like to know from the experts if this is actually possible.

 

[acer2000]

I think the advantages of using a well known crowd funding site are as follows:

- People know about it and trust it.
- Users who have signed up and funded other projects will potentially get exposure to your project because these sites tend to cross promote projects. Also people who have funded once are likely to seek out other projects. There is a community to leverage beyond your own.
- They have very optimized social sharing features. Its hard to fund something on kickstarter or indiegogo without having it also post to Facebook or Twitter with a link to the project.
- They get a lot of media coverage because they are a new phenomenon.
- They can put pressure on backers to recruit other backers because in many cases if the goal is not met no funding is awarded (or it is subject to higher fees).
- They allow for awards and communication via email updates to backers.
- They provide real-time updates on the status of the funds.

The disadvantages are (varies depending on the site):

- They take some fees.
- They dictate the time limit for meeting the goal.
- They don't fund the project if the goal isn't met, or the funds are subject to different fees/terms, etc.
- Some of the more science specific ones are opinionated about how the research is published (i.e. Open Access, etc).

The most effective crowd fund projects tend to provide a product that is very useful and is filling a void not being met by current products. I think this study meets that criteria and its communicated well.

The most effective campaigns make a strong personal appeal in very concrete ways to backers. They are very relatable on a basic human level. Canary in a Coal Mine did this very well. One of the things with the current microbiome campaign is that it is very heavy on promoting the authority and credentials of Dr. Lipkin and the science. I think this is hugely important, however maybe it can be complemented by personal appeals from patients or family members to give the campaign less of an "abstract" feel?

 

[Scarecrow]

I look at the thoroughness of Lipkin's approach and can't help but wonder if a similar approach might work for some other complex illnesses where the cause is unknown. I'm thinking about diseases like Lupus, MS, autism, Parkinsons.

@Aileen, I don't know about Lupus, MS and Parkinsons but I believe that the same team have already studied the microbiome in autism and had some interesting results. I'm sure someone will beat me to it but I'll have a look for it and post anything useful I find.

 

[Aileen]

@Scarecrow What I am trying to convey is that we need to get people outside our illness interested. If we could somehow show that the study could indirectly help them, we could get many more people personally invested in this project.

I have found that unless something effects them, people generally are not interested.

But first we need to know if it actually can or not.

 

[Scarecrow]

@Aileen, have a look at this page of the fundraising website under Mady Hornig
http://www.microbediscovery.org/the-scientists/

Here's one of the papers reporting findings
http://mbio.asm.org/content/3/1/e00261-11.full.pdf&

 

[Scarecrow]

@Scarecrow What I am trying to convey is that we need to get people outside our illness interested. If we could somehow show that the study could indirectly help them, we could get many more people personally invested in this project.

I have found that unless something effects them, people generally are not interested.

But first we need to know if it actually can or not.

Hadn't overlooked your point but, sorry, I didn't acknowledge it. I agree.