The appeal’s been going a little over 2 months now and this seems like a good time for a round up of donation news, media coverage and science action then.
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.”
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 Those figures are a little out of date and we’ll post a new total as soon as we have it.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!
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.
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.
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:
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 firstname.lastname@example.org. We’d love to hear from you.