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The Lipkin Microbiome Crowdfunding Campaign Launches!

W. Ian Lipkin

Dr. W. Ian Lipkin.
Image courtesy of the Columbia University Center for Infection and Immunity

An ambitious $1.27m international, patient-led fundraising campaign storms into action. Sasha invites you to join it!​

This week sees the launch of a major new crowdfunding campaign: the Microbe Discovery Project. The campaign aims to raise $1.27 million (£760,000; €910,000) by 31 December 2014 to fund world-famous virus-hunter Dr. Ian Lipkin’s ground-breaking study of ME/CFS and the gut microbiome – our intestinal ecosystem of bacteria, viruses and fungi.

The study

The study is spectacular, because of the series of crucial, cumulative steps that it makes to identify what might be driving our immune problems and hence our symptoms.

The study will take place at Dr. Lipkin’s 60-strong Center for Infection and Immunity at Columbia University in New York, the world’s largest and most advanced academic center in microbe discovery and diagnosis.

First, blood and faecal samples will be taken from 100 patients who each fulfil both the Fukuda and Canadian Consensus diagnostic criteria, and from 100 matched controls. Dr. Lipkin’s team will identify the viruses, fungi and bacteria in the guts of the study subjects using high-throughput DNA sequencing. They will then determine the amounts of each microbe using highly accurate real-time PCR assays that are specific to each microbe.

Bacteria Attacking Cell

“Bacteria Attacking Cell”
Image courtesy of Renjith Krishnan/FreeDigitalPhotos.net

Next, blood levels of cytokines (immune-system messenger molecules) will be measured to produce an immune profile for each patient. Biostatisticians will then analyze the cytokine and microbiome profiles to identify a potential link to ME/CFS and to define the relationship between immune markers and candidate microbes. In addition, the team will develop antibody tests for any microbes that appear to be related to immune dysfunction.

These stages together will make this a definitive study that has the potential to produce diagnostic tests for key microbes and to lead to treatments using drugs, probiotics or exclusion diets.

Some of these treatments, such as exclusion diets, have the potential to be rapidly adopted without having to go through the lengthy process of clinical trials and approval by the US FDA and other countries’ health institutions. In the absence so far of any FDA-approved drug treatments for ME/CFS, Dr. Lipkin’s study therefore appears immensely attractive.

The NIH falls short

Dr. Lipkin and his researchers have already sought funding and have so far been unable to fully finance the study. The NIH, of course, has always treated ME/CFS research poorly, giving us roughly $5 million a year to MS’s $115 million. Dr. Nancy Klimas has reported that in 2014, the NIH will give $3 million to ME/CFS and $18 million to study male-pattern baldness.

So, with funding to do only 10% of the work for the study, Dr. Lipkin put out a plea for funds during the 10 September 2013 CDC PCOCA Telephone Broadcast, saying, “[…] it is probably inappropriate for me to be passing the hat, but that’s precisely what I am doing.”

Video: Dr W. Ian Lipkin appeals for support for the ME/CFS microbiome study​

One patient makes a difference

Dr Ian lipkin with member of the Microbe Discovery Project

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

Vanessa Li, an ME/CFS patient, heard the broadcast and was so frustrated that such an important and promising project could be lost that she decided to start a campaign to crowdfund it. She contacted Dr. Lipkin’s office, gained their agreement for a campaign, and recruited other patient-volunteers to help.

Her timing for such a crowdfunding project is perfect. During the last year, patients have learned that together they can raise very substantial sums extremely quickly if they’re donating to a specific project rather than to a charity’s bottomless general research fund.

We’ve seen patients and supporters in Norway – with a population of only 5 million – raise $430,000 in 90 days for a clinical trial of Rituximab and, since then, a slew of US-based ME/CFS crowdfunding campaigns reaching or exceeding their targets at astonishing speeds: $213,000 in 31 days for the Canary in a Coal Mine documentary film; $18,000 in 35 days for the documentary The Blue Ribbon; and $150,000 in 75 days for an Open Medicine Foundation study of Vitamin B12.

It’s clear that when patients see a project that inspires them and an organised campaign gets behind it, the donations come storming in. We also know that when many small donors get the fundraising total to a certain level, large donors come forward: this is exactly what happened when a single donor gave $300,000 to Invest in ME’s UK Rituximab trial for ME/CFS after patients had raised $90,000.

The campaign

To get the fundraising drive underway, the campaign team have created a Facebook page with news and updates and a website designed to funnel people straight to Columbia’s donations page (if you need help, visit the campaign website’s donations page for instructions). The site includes a video message from Dr. Lipkin, information about the study and the scientists, the latest news, updates on the total sum raised, and suggestions for how you can fundraise and help spread the word about the campaign, including a template letter you can send to your local newspaper.

Image courtesy of Center for Infection and Immunity

Columbia University Center for Infection and Immunity
Image courtesy of CII

The Center for Infection and Immunity themselves are, of course, also promoting the study to potential donors via their own social media.

The campaign team have contacted leading bloggers to ask for coverage; this article on Phoenix Rising alone will reach thousands of readers. To get the message out even further, the fundraising team will conduct a mass email and Facebook contact campaign to tell individuals and organisations in our community about the project and to ask them to spread the message through their own social networks.

The team have plenty of other plans up their sleeves, which you can find out about on their website and Facebook page as things start rolling.

A rising tide

It’s hard to overstate Dr. Lipkin’s international reputation – he has just been awarded the highly prestigious Mendel Medal, given to outstanding contemporary scientists of the calibre of Nobel Laureates – and it is also hard to exaggerate what his involvement in our disease could mean for us. A finding from his laboratory would get the kind of attention from scientists and clinicians that at present we can only dream of and has the potential to lead rapidly to treatments.

There is already tremendous excitement about the study in the ME/CFS community and it’s building. A crowdfunding campaign for Dr. Lipkin’s project will attract attention from our own community that other studies would struggle to get and will allow us to reach out beyond we few thousand who follow blogs and forums and access the wider world of ME/CFS patients and beyond, just as Maria Gjerpe’s MEandYou campaign raised the profile of the disease across Norway.

Our donation base will permanently grow. Every other study that we want to crowdfund in future will benefit. A rising tide floats all boats.

So, donate from anywhere in the world, visit the campaign website, find out how to fundraise and to spread the word, and join with us.

Dr. Lipkin’s involvement gives us an unprecedented opportunity to change the game. Let’s take it!

Given the importance of spreading the word about this major appeal, Phoenix Rising is happy to permit immediate republication of the entire article. Please accompany with the following accreditation: ‘Article by Sasha, first published on Phoenix Rising: http://phoenixrising.me/archives/24385’ Thank you.

{ 63 comments… add one }

  • Sasha March 30, 2014, 6:02 pm
    Violeta

    Wasn't the original amount that Lipkin was asking for $1,000,000? I missed the information about the cost rising to $1,270,000. Is there an explanation for that somewhere?

    And is the number $17,800+ the current amount collected so far? Is the number on the website up to date?

    Thanks

    Originally, the CII (Lipkin's institute) set an 'initial goal' of $1m (it was described that way on their website and in Simon's interview with Dr Lipkin). The cost of the study has always been $1.27m (again, also set out clearly in Simon's article as well as mine).

    I think the CII must have thought it sounded like a nice round number and that it might encourage people to aim at an interim goal but, although they had always been transparent about it only being an initial goal, they've switched the focus to the actual target, which I think makes good sense.

    The website now shows when the total was last updated and when to expect an update. However, even the updated total is going to be a few days behind actual donations because of bank clearing times. My guess is, even a newly updated total is maybe as much as five days out of date.

    I'm dying to see what it looks like by the end of the week – lots of people here and on the campaign Facebook page are saying they've donated. :thumbsup:

  • Violeta March 30, 2014, 6:20 pm

    Thanks, Sasha,
    It had been said somewhere that if Lipkin doesn't raise the $1,000,000 the amount that he does raise will be given away to a different research program. Do you know if that $1,000,000 mark has also been changed to $1,270,000?

    If so, only $1, 252,200 to go!

  • Sasha March 30, 2014, 7:05 pm
    Violeta

    Thanks, Sasha,
    It had been said somewhere that if Lipkin doesn't raise the $1,000,000 the amount that he does raise will be given away to a different research program. Do you know if that $1,000,000 mark has also been changed to $1,270,000?

    I haven't seen that anywhere and it contradicts the FAQs page of the site, which is based on direct communication with Lipkin's institute (and talks about $1.27m, not $1m):

    http://www.microbediscovery.org/faqs/

    Specifically:

    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.​
  • snowathlete March 30, 2014, 7:24 pm

    I donated. Last week in fact, but didnt get round to posting it until now. donating is what counts most. You can always post about it when you feel up to it later, even weeks later, as it helps encourage others to donate as well.
    Thanks everyone involved in setting everything up and getting this article out there!

  • Battery Muncher March 31, 2014, 1:45 pm

    Donated!

  • Sasha March 31, 2014, 3:10 pm

    Thanks so much for all the donations, guys – keep 'em coming!

    I'm about to flog some stuff on Ebay to support this – it's a great way to raise extra cash.

  • Violeta April 15, 2014, 10:06 pm

    @

    Sasha

    I haven't seen that anywhere and it contradicts the FAQs page of the site, which is based on direct communication with Lipkin's institute (and talks about $1.27m, not $1m):

    http://www.microbediscovery.org/faqs/

    Specifically:

    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.​

    @ Sasha, I was looking for something else and found where I had read that if all the money isn't collected whatever funds are collected will be passed on to another ME/CFS project.

    "If I may take the chance to do so it should be noted here that this is similar to both the Norwegian and UK Rituximab campaigns in that, in those campaigns, there were similar clauses by which if the targeted goal was not reached, any funds raised would still go to other research studies for ME. We are however expecting to raise $1 million and thus have placed this option on the back burner!"

    Forgot to save the link. I'll get it.

  • Bob April 15, 2014, 10:33 pm
    Violeta

    @Sasha, I was looking for something else and found where I had read that if all the money isn't collected whatever funds are collected will be passed on to another ME/CFS project.

    "If I may take the chance to do so it should be noted here that this is similar to both the Norwegian and UK Rituximab campaigns in that, in those campaigns, there were similar clauses by which if the targeted goal was not reached, any funds raised would still go to other research studies for ME. We are however expecting to raise $1 million and thus have placed this option on the back burner!"

    Hi Violeta, this information is out of date. The crowdfunding campaign team now have a commitment from Dr Lipkin that, if the crowdfunding goal isn't reached, then the money will be used for a pilot study.

  • Violeta April 15, 2014, 10:45 pm
    Bob

    Hi Violeta, this information is out of date. The crowdfunding campaign team now have a commitment from Dr Lipkin that, if the crowdfunding goal isn't reached, then the money will be used for a pilot study.

    Okay, thank you, Bob.

  • Anne May 20, 2014, 2:14 pm

    >>Dr. Nancy Klimas has reported that in 2014, the NIH will give $3 million to ME/CFS and $18 million to study male-pattern baldness.

    This is such a great fact and I’d like to use it when I communicate about how hugely underfinanced the ME/CFS field is – BUT, does anyone have a source to point to?

    The statement comes from Nancy Klimas, perhaps someone at Phoenix Rising could ask her in which source the number $18 million for study male-pattern baldness can be found?

    (I would need a web page or a document to point sceptics to…)

    Here's the page with NIH budgeted spending (here they estimate $5 million for CFS in 2014):
    http://report.nih.gov/categorical_spending.aspx

  • Sasha May 20, 2014, 2:17 pm
    Anne

    >>Dr. Nancy Klimas has reported that in 2014, the NIH will give $3 million to ME/CFS and $18 million to study male-pattern baldness.

    This is such a great fact and I’d like to use it when I communicate about how hugely underfinanced the ME/CFS field is – BUT, does anyone have a source to point to?

    The statement comes from Nancy Klimas, perhaps someone at Phoenix Rising could ask her in which source the number $18 million for study male-pattern baldness can be found?

    (I would need a web page or a document to point sceptics to…)

    Here's the page with NIH budgeted spending (here they estimate $5 million for CFS in 2014):
    http://report.nih.gov/categorical_spending.aspx

    She was quoted on Al Jazeera with that figure:

    http://america.aljazeera.com/watch/…avethisdebilitatingdiseasewithalousyname.html

    but I don't know where she got it from. No-one on Phoenix Rising has special access to her, as far as I know – you could try emailing or writing to her office to get the source.

  • Bob June 7, 2014, 7:14 pm

    In case anyone hasn't spotted it yet, we have a crowdfunding news update thread here:
    http://forums.phoenixrising.me/inde…crowdfunding-campaign-news-and-updates.29430/

    It's regularly updated with the crowdfunding total, and other news.

  • Simon June 10, 2014, 6:12 am

    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)

    [​IMG]

    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.

    [​IMG]

    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.

    View attachment 7548

    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
    [​IMG]
    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.

    [​IMG]
    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.