220K Later - Microbe Discovery Projects Funds Unique Lipkin ME/CFS Study


Founder of Health Rising and Phoenix Rising
Staff member
Money from the patient crowdfund effort will fund a unique look at microbes in the throat.
Exciting news about how our crowdfund money will be spent, and a look towards the future at Columbia!

March 12, 2015
Firstly, dear donors and supporters – we wish to say that our team and everyone at the Center for Infection and Immunity (CII) at Columbia University are so incredibly grateful for your donations and support. We would not have got this far without your efforts and every single donation!

Although we didn’t reach our original goal, we raised a whopping $220,000 – thanks to you! We are thoroughly proud of what we have all achieved together and how our community got behind the project! The patient-driven crowdfund for this particular project may be over but Dr Lipkin and Dr Hornig need funds to continue their ground-breaking work into ME/CFS.
They are also leaving no stone unturned in efforts to find support for the remainder of the Microbe Discovery Project. And you can still donate to Columbia’s exciting, ongoing ME/CFS research programme.

We didn’t get enough for the BIG study that is needed, but the money we raised will be used to analyse the microbiome of the oropharynx (part of the throat), which, like the gut, is part of the gastrointestinal tract. The researchers have collected and will shortly begin analyzing these microbes in patients.
Dr Hornig has said that they also have already begun to investigate the full range of microbes – viruses, bacteria, fungus/molds – that may play a role as triggers in ME/CFS. They have a small gut microbiome study ongoing but need funds to expand the study. Dr Hornig explained this best on the recent Reddit Science ‘ask me anything’ session:

“We are currently collecting data from a small gut microbiome study in 50 cases and 50 controls; in addition, we have funding applications pending which, if successful, would allow us to expand this analysis, recruiting with our consortium of expert ME/CFS clinicians.

“Additional monies are essential to ensure that we can have a study of the proper size, and hopefully representing as many of the subsets of ME/CFS (short/long duration, viral/nonviral onset, other factors) in this gut microbiome analysis.

“But instead of waiting, we are planning to go ahead and examine the oropharyngeal [throat] microbiome using the crowdfunding monies already raised of $220K…..This is also an important body compartment to examine – in addition to the gut – not only because many individuals with ME/CFS begin with a sore throat or what is known as cervical lymphadenopathy (swollen glands of the head and neck) but also because we know that the oropharynx is a source of diverse microbes that can influence what metabolites are present in the blood. These metabolites can affect the immune system as well as influence peripheral and central nervous system function.

“As always, funding is essential and we certainly hope that all of the recent attention to our work will have increased the awareness of the clinical importance of this disorder, including reaching the very large group of individuals who remain undiagnosed. But…NIH funding is very difficult these days and we increasingly must rely on other sources.

“We are extremely grateful to the Chronic Fatigue Initiative of the Hutchins Family, as none of this work could have been done, had we not had their prescient and significant funding, not only for the laboratory analysis, but even to acquire this number of well-characterized samples from our clinician collaborators around the country. We are also indebted to the ME/CFS community at large for the monies raised thus far through crowdfunding, which will allow us to pursue additional types of microbiome studies that will enrich our understanding of the triggers of this disorder.

“We are hopeful that an adequate funding stream for ME/CFS research will allow us to accelerate the process of finding the causes and discovering appropriate interventions for this disease.”
This is great progress, and it is very clear these researchers are excellent and are putting this illness on the map. There was global media coverage of their first publication in this illness (funded through the Hutchins Family Foundation’s Chronic Fatigue Initiative). It is very clear that we’re at the beginning of very serious research starting to happen in ME/CFS – and the researchers have exciting plans and have more research about to be published!

In fact, Drs Hornig and Lipkin have just published a landmark study that found the immune systems of patients who have recently developed ME/CFS look markedly different from those who have been ill for much longer. This shift in immune systems, measured in the blood, hadn’t been seen before. And the team have another paper coming out soon about immune markers in spinal fluid, giving a window into immune action in the brain.

The fundraising picture needs to be far bigger than one crowdfund. These researchers can do so much with the money they receive. They are collaborative and creative problem-solvers. The Microbe Discovery Project has become the community’s place of support for Columbia and synonymous with it. So our Facebook page and Twitterfeed will be used to give updates and news regarding Columbia’s ongoing work and to encourage donations.

Our big message! Because of the paucity of funding for ME/CFS, we implore our community of fellow patients to continue to support and donate to these researchers. Our global community can help them move us forward, which will only lead to bigger findings and more government funding and grants – and hopefully to treatments and diagnostic tests.

You can donate to support Drs. Lipkin and Hornig’s whole research programme into ME/CFS at the Center for Infection and Immunity, Columbia University at: www.bit.ly/DonateToDrLipkin

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