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

[Bob]

* New Crowdfunding Total *

$63,453 from 414 donations

As always, a huge thank you to everyone for your generous support of this project.

Working as a community we will make this project successful.

Don't forget that we have a website, a Facebook page, and a Twitter account.

To make a donation, please click on this weblink:
www.bit.ly/DonateToDrLipkin

 

[Bob]

This week we are posting the last couple of entries in our current blog series about Dr Lipkin's ME/CFS gut microbiome study.


Dr Ian Lipkin’s Study of the Gut Microbiome in ME/CFS Patients
Blog Series. Part 8 of 9.
Treatment:
http://www.microbediscovery.org/blog/2014/06/02/dr-ian-lipkin-blog-part-8-of-9/

 

[Bob]

* New Crowdfunding Total *

The total raised is now:

$63,763 from 416 donations

Thanku everyone!

Together we are making a difference!

 

[Bob]

Today we are posting the last in our current blog series about Dr Lipkin's ME/CFS gut microbiome study.


Dr Ian Lipkin’s Study of the Gut Microbiome in ME/CFS Patients
Blog Series. Part 9 of 9.
Dr Lipkin – Enthusiasm for ME/CFS Research:
http://www.microbediscovery.org/blog/2014/06/03/dr-ian-lipkin-blog-part-9-of-9/

Here's an extract from today's blog:

Read more:
http://www.microbediscovery.org/blog/2014/06/03/dr-ian-lipkin-blog-part-9-of-9/

 

[Bob]

So we've now published our entire series of blogs. We hope you enjoyed them!

Below is the full list of entries.

Dr Ian Lipkin’s Study of the Gut Microbiome in ME/CFS Patients

Part 1 of 9
Background to the Gut Microbiome Study of ME/CFS Patients.
www.microbediscovery.org/blog/2014/05/19/dr-ian-lipkin-blog-part-1-of-9/

Part 2 of 9
Why is Dr Lipkin enthusiastic to be involved in ME/CFS Research?
www.microbediscovery.org/blog/2014/05/20/dr-ian-lipkin-blog-part-2-of-9/

Part 3 of 9
Microbiome Research – A Piece of the Puzzle for ME/CFS
www.microbediscovery.org/blog/2014/05/21/dr-ian-lipkin-blog-part-3-of-9/

Part 4 of 9
Funding Rejection
www.microbediscovery.org/blog/2014/05/22/dr-ian-lipkin-blog-part-4-of-9/

Part 5 of 9
Crowdfunding
www.microbediscovery.org/blog/2014/05/27/dr-ian-lipkin-blog-part-5-of-9/

Part 6 of 9.
The hypothesis
www.microbediscovery.org/blog/2014/05/28/dr-ian-lipkin-blog-part-6-of-9/

Part 7 of 9.
The Study
www.microbediscovery.org/blog/2014/05/29/dr-ian-lipkin-blog-part-7-of-9/

Part 8 of 9.
Treatment
www.microbediscovery.org/blog/2014/06/02/dr-ian-lipkin-blog-part-8-of-9/

Part 9 of 9.
Dr Lipkin – Enthusiasm for ME/CFS Research
www.microbediscovery.org/blog/2014/06/03/dr-ian-lipkin-blog-part-9-of-9/

 

[geraldt52]

Very nice job on the blogs, everyone. Hopefully it'll increase the reach of Dr. Lipkin's message from the original interview. Fingers crossed.

 

[Bob]

Crowdfunding Update.

The latest total is:

$64,584 from 422 donations.

A huge thank you to everyone for your support and generosity.

We're making a difference!

To make a donation, please click on this weblink:
www.bit.ly/DonateToDrLipkin

 

[Bob]

Together we are making a difference! Your donations have now funded 10 participants to take part in Dr Ian Lipkin's study of ME/CFS patients. Thank you!

 

[geraldt52]

I like the idea of thinking about it in terms of having now funded 5 patients and 5 controls. Maybe people wouldn't feel like we're up against an obstacle at $1.27M if the focus was shifted away from that. At least for me, putting it in terms of having already funded something makes it feel like we're making headway!

I wonder how receptive Dr. Lipkin would be to scaling back the 100 patients/100 controls, or if that would even make much difference in terms of the total cost. Obviously 5 patients/5 controls is not a useful study, but I wonder if say 50 patients/50 controls might be cheaper, and still make a viable study.

 

[Sean]

I like the idea of thinking about it in terms of having now funded 5 patients and 5 controls.

I also approve this marketing tactic.

Obviously 5 patients/5 controls is not a useful study, but I wonder if say 50 patients/50 controls might be cheaper, and still make a viable study.

I am of the view that Lipkin knows what he is talking about, and if he has asked for 100 patients (plus controls) then he should get them, and we should do anything we can to help him get them.

 

[Bob]

* Crowdfunding Update *

To date, the total raised is:

$64,879 from 428 donations.

Thank you to all the project's supporters!

This is a huge community project, involving patients and friends from all over the world!

There's loads more information on our Facebook page, Twitter account and Website, so please don't forget to visit them.

 

[Bob]

Dr Lipkin has said that he expects to discover and define subgroups, and the study needs large numbers of participants so the results (with regard to subgroups) will be statistically significant. (He says that he's involved statisticians in the design of the study.)

There is more about this in the 'hypothesis' section of the blog series:

"To define subsets of ME/CFS patients, Dr Lipkin needs to carry out large studies, collecting large amounts of data. This is why he is proposing a study involving 100 patients and 100 controls."

Regarding the rate of crowdfunding, the aim is to raise $1.27m, but if we raise a proportion of this, then Dr Lipkin has said that this will enable him to carry out a smaller study, with a view to strengthening his grant applications. So we shouldn't be overwhelmed by the $1.27m goal. Whatever we raise, it will be put to good use, but the more we raise, the quicker the research will be completed.

If every ME/CFS patient in the USA donated a small amount, then the study would be funded.
And we're a global project, with donations from 20 countries, at the last count, so we have a good chance of raising a large amount.

So please keep donating!
Every donation counts!

What if we don’t reach the $1.27 million target?
Dr. Lipkin has agreed that if, by 31 December 2014, $1.27m has not been raised, he will use the money raised to develop pilot data that will allow him to be competitive for funds needed to complete the work. He is fully committed to the project.
http://www.microbediscovery.org/faqs/

 

[Aileen]

I can't remember any names at the moment, but I do remember that there have been some well-known athletes that have publicly spoken about how they have/had ME or CFS. Someone should contact them and make them aware of this initiative. Hopefully they would put the info on their facebook page or tweet it or something. That may get people who are not patients or their relatives involved.

What about celebrities? Maybe someone concerned about health, or children who are having difficulty getting an education might be interested. Even if they don't donate, just the awareness would help. Of course, a donation would be nice too!

Also, what about the media? I hope that support groups worldwide have been contacted. They should be encouraged to try to get an article written about it. Or a mention on a newscast.

 

[vli]

Hello @Aileen, I just wanted to answer you about the celebrities, and hopefully the campaign team won't mind my leaving them to answer your other enquiries. I do not have the exact number but I believe we have already contacted about ten different celebrities whom we thought would either be friendly to the cause or suffered ME themselves, but none have responded. There are also celebrities like Martine McCutcheon who talk about having ME openly but who also talks about having been helped by the Lightning Process which we thought should not be associated with this campaign. We have thought of celebrity tweets, and very famous figures like Laura Hillenbrand and Angelina Jolie (who is directing "Unbroken" written by the former) but these people are too famous or too sick to consider lending their name to this initiative.

If anyone can think of any celebrities who might help with publicity, please say so!

 

[Aileen]

@vii I'm wondering whether mentioning this initiative might be good for the movie. It will generate publicity, and positive publicity at that. Or perhaps if they are contacted about it, they could simply be asked to pass it along privately to a few well-positioned people who may be interested in taking up the cause, tweeting it ... anything.

Also if they are interested, they may donate and/or ask a few people privately if they would consider contributing. Angelina certainly knows a few people with cash. Even if they give what for them would be a small donation, it would help.

I just think they should be made aware of it. Don't bug them, just make sure they know it exists.

What about politicians? They should know this is happening. Hey representative, we are having a million dollar new definition we don't want shoved down our throats, yet we have to resort to this ... A little help here!

 

[Aileen]

Another thought ... do veterans know? If this works, and either a cause, biomarker, something potentially treatable comes out of this, would it not help GWI vets? Maybe this same approach could be used for their illness? Or, they could be checked to see if the finding shows up in them in a follow-up study.

I realize a lot of vets don't have much money either. They could however spread the word, contact politicians, veterans affairs, media etc.

 

[Simon]

Ian Lipkin microbiome appeal – the story so far

The appeal’s been going a little over two months now and this seems like a good time for a round up of donation news, media coverage and science action then (click the link above to see this blog on the Microbe Discovery Project website)





So far 428 people have donated from around the world giving $65,000 – thanks so much if you have given. We still have a way to go to reach the $1.27m target by the end of the year, but with your help we can and will do it. The need is still there for cutting-edge hunt for the causes of ME/CFS in the gut “microbiome”, and it will be led by ‘the world’s most celebrated virus hunter’, Dr W. Ian Lipkin.



In the news
Journalist David Tuller, who has written about ME/CFS for the New York Times, highlighted the crowdfunding appeal with a piece on Buzzfeed that attracted nearly 50,000 views:

New findings are encouraging in the fight against chronic fatigue syndrome. But the government still provides funding so minimal, one researcher is turning to crowdfunding… “there has to be some way to get this done. There is no NIH funding to support this at present”, said Lipkin.

Thanks to David Tuller for his coverage who wrote again about the appeal in April.

On ME/CFS Awareness Day, 12 May, Columbia University (where the microbiome study is based) put out a press release about the appeal: More Than a Gut Feeling:

Patients, many who have gastrointestinal symptoms, are convinced that the microbiome will bring answers. Amy, a former occupational therapist from New Zealand and member of the fundraising team, says, “I don’t think the gut and immune system connections have been looked into enough in general and also the gut-brain axis. This is an exciting area of research and we get to be part of it.”

Gone global
At the last count donations had already come from 20 countries and 33 US states. Those figures are a little out of date and we’ll post a new total as soon as we have it.

The Big Interview
Also for ME/CFS Awareness Day, Ian Lipkin did a barnstorming interview with Mindy Ketei at CFS Central:

Mindy Kitei: Where can people donate to your research?

Dr. Ian Lipkin: Donate to our research. We’re all in the same boat. We’re trying to find solutions to an important problem, so I want to be very clear to your readers that it is their project. It was organically developed in response to their needs, and their wishes, and we’re eager to serve.​

Cort Johnson wrote a fascinating commentary on the Lipkin/Kitei interview at Health Rising and wholeheartedly endorsed the campaign:

The Ian Lipkins of the world don’t come around very often for ME/CFS. He’s an opportunity we don’t want to miss… a resource we can’t afford to waste.. He’s a busy man. He’s in demand. Something is always popping up.

Support the crowdfunding project!​

Thanks, Cort!

Medal winner
As if to emphasise the point about Ian Lipkin’s worth, he was recently awarded the prestigious Mendel Medal to honour his ground-breaking work in the development of genetic methods for microbial surveillance and discovery.

Conference Action

A member of the campaign team and Dr W Ian Lipkin at the Stanford ME-CFS Symposium 2014

Dr Ian Lipkin was a headline speaker at IACFS/ME in March, with his talk “Small Game Hunter”, about his work discovering microbes including his work on the human microbiome (so far in autism), as well as his work as part of the Chronic Fatigue Initiative (CFI) looking for pathogens and markers of immune dysfunction.

Ian Lipkin will also be speaking on Infection and Immunity at the inaugural UK CFS/ME Research Collaborative Conference in September.

Dr Mady Hornig, who will be the lead researcher on the crowdfunded microbiome project, also spoke at IACFS/ME about the CFI work, including a fascinating finding that one cytokine is correlated with cognitive problems in severely-affected patients. Drs Lipkin and Hornig are keen to pursue the microbiome research as they believe problems in the microbiome could well be driving the elevated cytokines that are associated with symptoms.


Dr Mady Hornig.
Photo courtesy of the Columbia University Center for Infection and Immunity

Drs Lipkin and Hornig are world-class scientists who have done great work in many fields, and we are lucky to have them on board.

New blog series about the microbiome study and appeal

We’ve published a popular series of short blogs, providing a background to the study, the researchers and the crowdfunding project. Read the first in the series – or check out the full list of the blogs.

Double your money!
Many US companies will make a matching gift to Columbia when an employee or spouse of an employee makes a donation. You can find out which companies offer matching gifts and under what circumstances here.

Making it happen
The microbe discovery project needs patient support to make it happen. We really appreciate the support you’ve given so far. Please, if you can, give again. Ask your friends and family to give. And spread the word: we are on Facebook, Twitter and YouTube:

And of course we have this Microbe Discovery Project website – now translated into four languages: Deutsch, Nederlands, Español & Čeština.

Thanks to everyone who has supported Dr Lipkin’s appeal.

Finally, if you have any questions, comments – or if you want to join the team – please contact us at info@microbediscovery.org. We’d love to hear from you.

 

[Sasha]

Superb summary, @Simon - thanks!

 

[Bob]

* Crowdfunding Update *

To date, the total raised is:

$68,046 from 438 donations

Thank you to all the project's supporters!

This is a huge community project, involving patients and friends from all over the world!

There's loads more information on our Facebook page, Twitter account and Website, so please don't forget to visit them.

 

[rosie26]

Great to see it growing. I plan to donate again soon. Thanks everyone who is donating. Let's push hard for this research and show we mean business.