Zionsville Fellowship Church fundraiser raises more than $900

ZionvilleFellowshipThankYou

We have received the following message about a community fundraiser held at the Zionsville Fellowship Church in Indiana which raised more than $900 for Dr Ian Lipkin and his team at the Center for Infection and Immunity.  Thank you very much – what great effort!  Read more ›

Posted in Crowdfunding, Global effort, United States

Personal message from a supporter: why I support Dr Lipkin’s ME/CFS research

Here is a message from one of the member’s of our crowdfunding team:

*****

My personal thoughts about Dr Lipkin…

For me personally, I’m deeply excited by Dr Lipkin’s research plans. I can’t quite believe that we have someone of Dr Lipkin’s calibre taking such a keen interest in ME/CFS, along with such mega research plans.

The proposed gut microbiome study is complex, cutting-edge, multi-faceted and very interesting. It includes a study of cytokines, sequencing of pathogens, and a serology investigation (looking for antibodies). Even if the answer does not reside in the gut for all of us, I think the study has the potential to throw up some unexpected results that could lead ME research in an unexpected direction.

Dr Lipkin’s already got intriguing results from a soon-to-be-published cytokine study, and loads of other exciting research planned. e.g. proteomics, metabolomics, RNA sequencing, a pathogen hunt via high-throughput sequencing of blood cells. And he doesn’t seem to be intending to stop there. He’s going to follow any leads that he gets, as long as he can get funding.

For myself, it’s a no-brainer. I think that every small or large donation is a demonstration of our support for Dr Lipkin, and in my opinion, I think we should do everything in our (very limited) power to keep Dr Lipkin involved in ME research, and to show him our support, for the following reasons:

  • The gut microbiome is a fascinating area of research, but it’s just the start. Dr Lipkin’s got huge plans for CFS, if he can get the funding.
  • Dr Lipkin really is a world-class scientist. He knows what he’s doing. If he finds something, then it will be difficult for governments and health agencies to dispute it. (And he’s already found abnormalities in his cytokine research.)
  • He’s really interested in CFS. I get the feeling that he really wants to find answers, and believes that he can. He’s currently got about 6 different CFS research projects underway.
  • He’s already got some results to publish – the cytokine study.
  • Governments will find it difficult to refute or ignore his findings. And he will follow-up any findings himself until he gets answers.
  • He’s got connections, and everyone takes him seriously.

He’s taking this illness very seriously, and he’s approaching science in the way he knows best, which is in a world-class fashion! The more I hear about his research and plans, the more I become convinced that his research will throw up some answers. Perhaps more answers than we’ve ever had before in ME/CFS.

The crowdfunding effort in itself will further highlight ME/CFS and bring us well-needed attention. We’ve already been mentioned in media articles, and we hope there is more media stuff to come yet. With patients working on the project, and regularly interacting with Dr Lipkin’s team, this has also given Dr Lipkin a personal reason to invest in the illness. I think it’s given his team an added impetus to reach out to promote this crowdfunding project. Dr Lipkin’s team is working behind the scenes to attract funding, and to promote the project, as well as our team. So, whatever happens, this project is already a success and has already made a difference. I hope the fruits will show more as we head towards the end of the year.

*****
Would you like to share your thoughts and/or reasons for supporting Dr Lipkin’s ME/CFS research?  Please get in touch with us by email.  Thank you!

Posted in Crowdfunding, Dr Ian Lipkin, Global effort

Thanks to donors around the world

$68,046 (£40,628 or EUR50,237) has been raised as of today, from 438 donations which came from a total of 22 countries! This truly is a global effort – thank you to everyone who has made a donation, helped to spread the word about this crowdfunding campaign or helped in other ways.

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Posted in Crowdfunding, Dr Ian Lipkin, Total update

Dr Ian Lipkin microbiome appeal – the story so far

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.

joinin

DrLipkinFrontWe 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.

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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

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

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.

DONATE NOW

Posted in Blog, Crowdfunding, David Tuller, Dr Ian Lipkin, Global effort, Microbiome, San Francisco conference, The Microbe Discovery Project blog series, Uncategorized

The Microbe Discovery Project

Please join us!

This is a patient-led crowdfunding project, in support of Dr Lipkin’s study of the gut microbiome for ME/CFS patients.

Dr Lipkin’s research funding application was declined by the NIH, so we have started this patient-led crowdfunding project to support Dr Lipkin’s research.

In the short period that we have been crowdfunding, we have so far raised more than $60,000, with donations from 20 different countries and 33 US states. The project will be even more successful with your support.

We have a growing community of international supporters including on Twitter and on Facebook, and we would love you to join us.

With more of our community involved, from countries all over the world, we will demonstrate our support for Dr Lipkin and his team; we will raise the profile of the crowdfunding project; and we will raise the profile of ME/CFS in general.

The ME/CFS patient community has a chance to have a world-renowned scientist dedicate his team to our illness. Let’s grab that chance!

As a community united with a common cause, we are stronger together!

We can make a difference!


The Microbe Discovery Project

ME/CFS: a devastating neuro-immune disease as disabling as multiple sclerosis, affecting one million Americans and 17 million people worldwide.

The study: a cutting-edge hunt for the cause of symptoms in ME/CFS, studying the gut “microbiome” – the bacteria, viruses and fungi in the digestive system – led by “the world’s most celebrated virus hunter”, Dr W. Ian Lipkin at the world’s largest and most advanced center for microbe discovery and diagnosis at Columbia University in New York.

Dr Lipkin has found evidence for immune dysregulation in ME/CFS patients and believes that an infectious agent is the trigger or cause of the dysregulation. He believes the answer may lie in the gut microbiome, and is eager to study it.

The payoff: a world-class study with the potential to lead to trials of treatments using drugs, probiotics or exclusion diets.

Our challenge: to raise $1.27 million (£760,000; €910,000) to fund the project and do it fast! Dr Lipkin’s team are ready to go and can complete and publish the study within 12 months of starting. The sooner we fund it, the sooner it starts.


Please join us.

Please join us and spread the word to your family, friends, fellow patients and anyone in your network via your group mailing list, Facebook page, Twitter, or however you can.

Together, we can make a difference!​.

To find out more, please visit the website:
www.microbediscovery.org

To donate, please click here:
www.bit.ly/DonateToDrLipkin

Please join us on Facebook:
www.facebook.com/microbediscovery

And on Twitter:
https://twitter.com/MicrobeProject

Contact us:
info@microbediscovery.org


 

Posted in Blog, The Microbe Discovery Project blog series

Dr Ian Lipkin’s Study of the Gut Microbiome in ME/CFS Patients – Part 9 of 9

Part 9 of 9

Dr Lipkin – Enthusiasm for ME/CFS Research

After listening to Dr Lipkin discuss his plans, expressing his enthusiasm, and his expectations, it is difficult not to also be enthused and impressed with the scope of his ambitions for ME/CFS.

DrLipkinFront

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

The ME/CFS patient community has the chance of a high-profile and world-renowned scientist to take an interest in their disease, to take hold of it with both hands, and to shake it until it gives. His ambitions are not modest. Dr Lipkin intends to get results. He is willing to explore the disease from many angles, to follow leads, and to test out ideas.

The gut microbiome study is just one study among a number of ME/CFS studies that Dr Lipkin is involved in. Dr Lipkin is not messing around, tinkering at the edges. In collaboration with the Chronic Fatigue Initiative, and other researchers, he’s searching for pathogens in the blood and spinal fluid; he intends to carry out a comprehensive search for viruses, bacteria, and fungi in the gut microbiome. (In which he will be looking for anything unusual: A single virus, or a pattern of microbes, that might indicate a difference in ME/CFS patients.) His team are also investigating immune biomarkers, gene expression, proteomics, and metabolomics.

Columbia University Medical Center campus. New York. Image: http://en.wikipedia.org/wiki/File:ColumbiaMedicalCenter.jpeg

Columbia University Medical Center campus.
New York.
Image: http://en.wikipedia.org/wiki/File:ColumbiaMedicalCenter.jpeg

Science doesn’t get better than this. The Center for Infection and Immunity has a reputation for scientific excellence, and scientific discovery. And Dr Lipkin says he is “desperately eager” to research ME/CFS. Yes, you heard correctly. Dr Lipkin, one of the world’s most eminent scientists, is “desperately eager” to support and research the underfunded, misunderstood, neglected, and forgotten illness that is known as ME/CFS.

Dr Lipkin repeatedly states that he is eager to get started with this project; that his laboratory is ready to go; and that he has a team of 60 whom he wishes to dedicate to the research. All he needs is the funding.


This is a series of blogs based partly on an interview with Dr Ian Lipkin by Simon McGrath in January 2014, in relation to the intended study of the gut microbiome of ME/CFS patients. (To see Simon’s article please click here.)

Please feel free to repost this blog on your own website or Facebook page, etc., but please include a link to the original blog:
http://www.microbediscovery.org/blog/2014/06/03/dr-ian-lipkin-blog-part-9-of-9/
and the donation link:
www.bit.ly/DonateToDrLipkin


Please join us.

Please join us and spread the word to your family, friends, fellow patients and anyone in your network via your group mailing list, Facebook page, Twitter, or however you can.

Together, we can make a difference!​.

To find out more, please visit the website:
www.microbediscovery.org

To donate, please click here:
www.bit.ly/DonateToDrLipkin

Please join us on Facebook:
www.facebook.com/microbediscovery

And on Twitter:
https://twitter.com/MicrobeProject

Contact us:
info@microbediscovery.org


 

Posted in The Microbe Discovery Project blog series