The Lipkin Microbiome Crowdfunding Campaign Launches!
March 27, 2014
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
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
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.
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
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
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.
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
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
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
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.