The Lipkin Microbiome Crowdfunding Campaign Launches!

March 27, 2014

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

{ 63 comments… read them below or add one }

vli March 27, 2014 at 5:17 am

I would like to extend an enormous, warm thank you to Phoenix Rising for hosting a second article by another excellent writer on this crowdfunding campaign and for promoting us by giving it so much exposure. I am forever indebted to the Phoenix Rising Content team for devoting their time and resources to publishing this article, featuring it on the top banner, and including it in the upcoming PR newsletter. My biggest and sincerest thanks to all.

heapsreal March 27, 2014 at 8:07 am

good on ya. Good to put a name to the face too.
Just wow, your an inspiration for getting something like this started.
I cant believe $18mill for male pattern baldness, tell all the baldies to stop worrying about vanity, they can do cbt/get for hair growth and cfs/me will have that money for real research.

vli March 27, 2014 at 8:10 am

Thanks, heaps, although it's not just me! There're at least five people behind me (metaphorically speaking) propping me up.

I missed you! I have had no time to look at the 'usual' threads at all.

heapsreal March 27, 2014 at 8:14 am
vli

Thanks, heaps, although it's not just me! There're at least five people behind me (metaphorically speaking) propping me up.

I missed you! I have had no time to look at the 'usual' threads at all.

sounds like u have been busy, hope u have found some sort of relief with your suffering. Hopefully one of the first to trial any new treatments they think are worthy??

vli March 27, 2014 at 8:18 am

no i wish… if you feel like liking the project's Facebook page and sharing the website though, you're most welcome!! (can't promise any cycloferron in return though… sorry!)

Nielk March 27, 2014 at 9:44 am

Thank you Vanessa and all involved. I have just added my donation.

Cheesus March 27, 2014 at 9:57 am

It's amazing we can't get funding for this. One of my dad's colleagues has just been awarded a £1.9million (note that is GBP and not dollars) grant to study the relationship between the human and the chicken.

Just ponder that for a moment.

dasiymay March 27, 2014 at 10:22 am

Donated, thank so much Vanessa and to everyone involved.

Unfortunately there are millions of us round the world with ME/CFS, about 19 million I've seen quoted, but this means there are millions of us who can give, plus family and friends.

No matter how small that donation may be, it is worth giving, it all adds up if many are giving. I feel sure we can do this, we can raise the money if we all pull together.

In fact when you look at it that way, we can surely raise many millions!

Ren March 27, 2014 at 10:25 am

Here's a list of the responsible NIH men and woman and their propaganda:
http://www.nih.gov/about/director/budgetrequest/fy2014testimony.htm

———–

Edit: Okay – have donated now as well! Thank you to all who are making this possible!

Quilp March 27, 2014 at 10:43 am
vli

I would like to extend an enormous, warm thank you to Phoenix Rising for hosting a second article by another excellent writer on this crowdfunding campaign and for promoting us by giving it so much exposure. I am forever indebted to the Phoenix Rising Content team for devoting their time and resources to publishing this article, featuring it on the top banner, and including it in the upcoming PR newsletter. My biggest and sincerest thanks to all.

I would like to echo your sentiments. Phoenix Rising has been more of a family, more of a friend to me, than those that walked away when I needed them most.

I have taken for granted the work they do, the advice and help they give.

It is a source of concern to me that those that take the time to moderate the board, time to write the articles, especially the interview with Dr Lipkin ( and there are many others ) do so in ignorance of the gratitude of those such as myself. I hope there is little doubt now.
Perhaps you'll never really know just how thankful I am. In fact, I am almost ashamed to admit the depths to which I have come to rely on Phoenix Rising.

It is all the more remarkable that you are poorly yourselves.
It is a thankless task, and in truth, it is not one I would be willing to undertake.

If I have a voice, it is only because you chose to listen.

Thanks, Mark

adreno March 27, 2014 at 11:30 am

Donated, really looking forward to this, I think it has great potential!

Sasha March 27, 2014 at 11:32 am

Thanks so much to all who are donating! Let's keep the $$$ coming in.

Even if you can only donate the price of a cup of coffee or of a magazine or a paperback book, it will all add up – and this is the sort of exciting, ambitious campaign that it's great to feel a part of.

I think that money is going to rack up very quickly. :)

Sparrow March 27, 2014 at 12:20 pm

I donated to his department when word of this need first came out, but I've donated again now, earmarked specifically for this campaign. I trust his credentials as a researcher, and if this is the direction he feels would be most useful for us to explore next, I want to do everything I can to make that happen.

I would strongly encourage anyone in the U.S. to bring this need to the attention of their representatives as well. Underfunding tends to get blamed on a lack of interest from credible scientists. Well, Dr. Lipkin is certainly credible, and interested…

vli March 27, 2014 at 6:55 pm

Hello @Sparrow–thank you for both of your donations!

All donations given at Columbia's gift-giving link from October '13 to date go directly to the microbiome study. We had a couple of problems before getting Columbia to change their drop-down menu to make this more obvious but even before those changes had been made, Columbia had confirmed that any donations given from October onwards went into the same microbiome study pot that your second donation has gone to. Just wanted to let you know all donations given since October went to this study :)

Lynne B March 27, 2014 at 7:11 pm

Many, many thanks to all of you working on Phoenix Rising and this thread in particular. It's true, your site has given us great companionship, and hope, as well, by giving us vital information about research and so on over the years.

This study sounds tremendously useful and I too would drop everything and fly to the USA to be part of the study. If only… Even so, I've already donated and I'll do so now, again, today!

But I'm curious about how much has already been raised and I'd love a running total of the amount, put somewhere prominent on the home page, so every time I look at Phoenix Rising I can feel part of the project.

Thanks again, Lynne

PDXhausted March 27, 2014 at 8:12 pm

I've donated again, and just wanted to say great job on the website! It turned out really well!

vli March 27, 2014 at 8:17 pm

Hi @Lynne B–thank you for your donation!

If you look on the right hand side of the homepage on http://www.microbediscovery.org/ you will see the amount of funds raised so far. Right now we are working very hard to get Columbia to give us updates more than twice a week, but tomorrow (Friday) happens to be the second time in the week when the total will be updated, so be sure to check over at the site tomorrow for the most up-to-date total!

Big thanks to you and all our other kind donors for your continuous support :)

Sasha March 28, 2014 at 1:36 am

We're all very used to sites like Kickstarter and Justgiving now, where you donate and you see the total update instantaneously – it's very thrilling!

For this project, money goes in via that Columbia University standard donations page and it's just not like that – updates have to be obtained from the CII's office so there's a built-in delay and some administrative faff for them with the university.

It's clear from messages that the team are receiving both here on the article comments and through direct contact, though, that a lot of people are donating!

If you do donate, please post about it. It's not boasting. It's helping to set a social norm. Research shows it encourages other people to donate, so don't hide your light under a bushel!

Thanks so much to all who have donated – keep it coming!

:thumbsup::thumbsup::thumbsup:

beaker March 28, 2014 at 2:58 am

I donated for this project before this campaign started.

ETA: Thanks to V and the rest who set the website up and the crowdsourcing initiative.

Simon March 28, 2014 at 5:55 am

Thanks to all who have donated, and if you haven't yet, please do consider making a gift. Even a dollar helps.

And if you happen to have the full $1.27million, please don't hold back.

vli March 28, 2014 at 6:01 am

Fantastic @Simon. :D

As I said in Simon's original article, if every ME/CFS patient in the United States gave only $1, we would already have raised $1 million–the CDC estimates there are at least 1 million ME/CFS patients in the United States.

Cheesus March 28, 2014 at 8:05 am
Sasha

We're all very used to sites like Kickstarter and Justgiving now, where you donate and you see the total update instantaneously – it's very thrilling!

For this project, money goes in via that Columbia University standard donations page and it's just not like that – updates have to be obtained from the CII's office so there's a built-in delay and some administrative faff for them with the university.

It's clear from messages that the team are receiving both here on the article comments and through direct contact, though, that a lot of people are donating!

If you do donate, please post about it. It's not boasting. It's helping to set a social norm. Research shows it encourages other people to donate, so don't hide your light under a bushel!

Thanks so much to all who have donated – keep it coming!

:thumbsup::thumbsup::thumbsup:

I've donated, my parents have each donated, I recruited a number of facebook friends to donate and two of them shared, and one person said they will raise cash for it with a half marathon he has coming up!

It is frustrating we can't see the total. I'd like to see that ticking on upwards as it would act as something of a motivator.

vli March 28, 2014 at 8:35 am

Thank you, @Cheesus, for recruiting so many people to donate (and please do thank your friend who's running a half marathon for us)!

You have my word as campaign initiator that we are working as hard we can to get the fundraising total updated every day from Columbia. We're working hard to get a daily update, but this might not be possible because of administrative issues.

As soon as this gets fixed I will inform you all :)

Sasha March 28, 2014 at 10:37 am
Cheesus

I've donated, my parents have each donated, I recruited a number of facebook friends to donate and two of them shared, and one person said they will raise cash for it with a half marathon he has coming up!

It is frustrating we can't see the total. I'd like to see that ticking on upwards as it would act as something of a motivator.

That's fantastic, Cheesus – I should also take my own advice and say I've donated and so have my family. :)

Yup, I'm at one with you about the joy of seeing a concurrent total – we'll just have to imagine it for now! :cool:

SB_1108 March 28, 2014 at 12:01 pm

Just a few suggestions for the Microbe Discovery website – If there could be a small block of text under the "total raised" box to indicate how often the total is updated – that way those that go to the website would know why the counter didn't change when they made their donation. At least thats what I was thinking after I made mine and I had to look back at the comments here to figure out why.

The other suggestion I have… I think one thing about the Blue Ribbon project and Canary in a Coal Mine that made it successful on Kickstarter was the compelling video on the front page. I think the interview with Dr. Lipkin is great but maybe we could contact Jennifer Brea or Ryan Prior about doing a bit of editing to better relay the urgency and significance of this work.

Its so disheartening that those left with this condition have to find the funds to pay for research. Especially when there are so many of us that have been denied for government assistance/disability. I've had CFS for about 5 years and I am still waiting on my disability determination but I have donated – because I feel like I need to help myself! I hardly have any money in the bank but I do believe that Lipkin is on the right track.

I just want to second Quilp's comment

I would like to echo your sentiments. Phoenix Rising has been more of a family, more of a friend to me, than those that walked away when I needed them most.

Last comment – I am so grateful to everyone at Phoenix Rising for everything they do – Most of my friends walked away from me when I became sick. Just being able to read posts from people going through the exact same thing as me makes a world of difference in my life!

geraldt52 March 28, 2014 at 1:00 pm

Maybe everyone has already thought of this, but I'll put it out there just in case. Before donating, consider if you have a family member or good friend who works for a medium or large size company that might match their employees charitable contributions. This is a very common company policy, although many people are unaware of it.

By giving your contribution to your family member/friend, and having them make the contribution instead, you could capture their company's match and effectively double your contribution. In addition, your family member/friend might benefit from a tax deduction for the contribution, whereas many of us living on disability would not. Who knows, if you broach the subject with your family member/friend maybe they'll be willing to contribute a bit on their own!

There's nothing even remotely illegal or unsavory about this, it's just a way to maximum any contribution you're able to make by enlisting the help of family and friends. People often ask "but what can I do for you?"…well, this is something they can do for you that costs them little or nothing.

Sasha March 28, 2014 at 1:21 pm

That's interesting, @geraldt52 ! Do you mind if I ask which country that's in? I'm not familiar with it.

geraldt52 March 28, 2014 at 1:35 pm
Sasha

That's interesting, @geraldt52 ! Do you mind if I ask which country that's in? I'm not familiar with it.

USA, although I knew of a British company operating in the US that had the same policy. As I said, many people are unaware even that their own company has such a policy…it's worth someone contacting human resources to be sure. Many companies have dollar limits and most require the charity to be "qualified", which I'm sure Columbia is.

If you go through the donation process on the Columbia website there is actually a section that asks if your company does matching contributions. I think I remember they even have a list of companies that do, though I wouldn't rely on that list as being complete. I also think that if you check yes Columbia will contact the company and take it from there.

Sasha March 28, 2014 at 1:43 pm
geraldt52

USA, although I knew of a British company operating in the US that had the same policy. As I said, many people are unaware even that their own company has such a policy…it's worth someone contacting human resources to be sure. Many companies have dollar limits and most require the charity to be "qualified", which I'm sure Columbia is.

If you go through the donation process on the Columbia website there is actually a section that asks if your company does matching contributions. I think I remember they even have a list of companies that do, though I wouldn't rely on that list as being complete. I also think that if you check yes Columbia will contact the company and take it from there.

Thanks, @geraldt52 – yes, Columbia is a registered non-profit.

I just went through the donation process and couldn't see the bit about matching contributions. Can you tell me which page it's on in their process? Sorry – I maybe be missing something obvious!

Firestormm March 28, 2014 at 2:20 pm
Sasha

Thanks, @geraldt52 – yes, Columbia is a registered non-profit.

I just went through the donation process and couldn't see the bit about matching contributions. Can you tell me which page it's on in their process? Sorry – I maybe be missing something obvious!

I believe it talks about it after you have completed your personal information, Sasha.

Sasha March 28, 2014 at 2:22 pm
Firestormm

I believe it talks about it after you have completed your personal information, Sasha.

I did that – I'm on p. 4, headed 'Review' – am I just not seeing it? :thumbdown:

Firestormm March 28, 2014 at 2:32 pm
Sasha

I did that – I'm on p. 4, headed 'Review' – am I just not seeing it? :thumbdown:

Must be after you have entered your payment details then – I can't afford any more this month or else I would work through it – but we had raised this matching of gifts option before I think. Be good to try and contact some of the employers in the US or at least make more donors aware – as Gerald said – that this is an option available to them.

I don't suppose Gift Aid applies to UK donations – this being a US non-profit. But perhaps that's something else we can look into at some point.

Funny the things that occur to one… :)

Sasha March 28, 2014 at 2:36 pm
Firestormm

Must be after you have entered your payment details then – I can't afford any more this month or else I would work through it – but we had raised this matching of gifts option before I think. Be good to try and contact some of the employers in the US or at least make more donors aware – as Gerald said – that this is an option available to them.

I don't suppose Gift Aid applies to UK donations – this being a US non-profit. But perhaps that's something else we can look into at some point.

Funny the things that occur to one… :)

Maybe that's it – I'll check this out. Thanks! :)

Firestormm March 28, 2014 at 4:45 pm

With Significant Advances But Little Money, Chronic Fatigue Syndrome Research Tries Crowdfunding

David Tuller

March 28, 2014 Buzzfeed


Even Dr. Ian Lipkin, a renowned Columbia infectious disease expert, has had trouble getting NIH funding for ME/CFS research. In 2010, Dr. Lipkin was recruited by the NIH to lead an investigation into the suspected mouse retroviruses. His study found that no link existed and theorized that the earlier findings, which suggested an ME/CFS connection, were the result of laboratory contamination.

Following that study, he continued seeking possible infectious triggers for the illness with funds from the Hutchins Family Foundation and has recently launched a video crowdfunding campaign to raise an additional $1 million or more. In the unusual public appeal, which he posted on the site of his Center for Infection and Immunity at Columbia, he noted that “we are off to an excellent start but the resources are insufficient to do what needs to be done, to do what the community deserves.”…

Please read more: http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome-research

geraldt52 March 28, 2014 at 5:20 pm
Sasha

Maybe that's it – I'll check this out. Thanks! :)

Sasha, let us know if you don't find it on the Columbia website. If someone now in the process of making a contribution doesn't chime in, I'll make a small contribution just to go back through the process myself…I remember it being there, but not much more.

Sasha March 29, 2014 at 1:07 am
geraldt52

Sasha, let us know if you don't find it on the Columbia website. If someone now in the process of making a contribution doesn't chime in, I'll make a small contribution just to go back through the process myself…I remember it being there, but not much more.

Thanks Gerald – I'll shove some more money in the slot and pay attention this time! Thanks for bring this up. :thumbsup:

Sasha March 29, 2014 at 1:12 am
Firestormm

http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome-research

Wow! Just wow!

You can 'heart' this article via a FB or google thing – I don't know if that helps jack it up some list or something? Anyway, I just did it.

You can also 'thumbs up' comments and I just did some. I also posted a comment with a link to CII's donations page and to the campaign website – it appears a bit weirdly on my screen so I'm not sure if it's visible on the comments list like everyone else's.

The comments are listed in order of how many thumbs up they've got – that may just be coincidence – but I'd be grateful if people could like CII's own comment and mine to keep those links high up, if we can, as well as any others you like.

Also, please post there that you've donated, if you have – set the norm and show people that this is a campaign they should be joining because it's going to succeed!

Sasha March 29, 2014 at 2:36 am

Argh, finally, my message is up! I had all sorts of trouble. Finally managed it on the fourth go by entering it using FB (a dummy account so please don't anyone start liking me or contacting me via it – I'm afraid that account gets 'total ignoral' from me!).

The comments that appear first on that page are FB ones and to make a comment you have to be logged into your FB account and hit the little 'comment' thing. I tried three times to post via the 'add your response' thing further down and it never appeared. No idea what the issue is.

Anyway, I'd be grateful if people could 'thumbs up' my message in case it helps get Columbia's donations page link and our website link up the page there.

Thanks!

Sasha March 29, 2014 at 3:09 am

Can anyone actually see my comment on that Tuller article? I can see it and have even 'thumbs-upped' it myself but a couple of people have told me they can't see it.

Sasha March 29, 2014 at 3:45 am

26,000 views that article by David Tuller has had!

I hope they're all donating! :)

vli March 29, 2014 at 3:51 am
Firestormm

I believe it talks about it after you have completed your personal information, Sasha.

Yes that's right.

drewmaster March 29, 2014 at 11:37 am
vli

I would like to extend an enormous, warm thank you to Phoenix Rising for hosting a second article by another excellent writer on this crowdfunding campaign and for promoting us by giving it so much exposure. I am forever indebted to the Phoenix Rising Content team for devoting their time and resources to publishing this article, featuring it on the top banner, and including it in the upcoming PR newsletter. My biggest and sincerest thanks to all.

I echo what vli wrote … a huge THANK YOU to everyone at Phoenix Rising for giving this crowdfunding campaign so much exposure! This well may prove to be the study that unlocks the mystery of CFS for so many people.

But we need everyone's support here. If you have not donated yet, please, PLEASE do so now!! Trust me, you will feel great after you do.

Thank you.

Drew

anniekim March 29, 2014 at 12:00 pm

Fantastic initiative, a huge thank you to all who are involved. My mum and I have both donated and in the coming months I will again when finances allow. Fundraising events are a good way to see those dollars rise. A couple of years ago I did a screen free weekend for Invest in ME and was able to reach out to family and friends. I am bedridden so the only thing I could do was something like a screen free weekend.

I see some people post up requests for donations within the ME community which is great but as we only have finite resources spreading it out to family and friends increases funds. Let's do this :D

Soundthealarm21 March 29, 2014 at 3:13 pm

Chipped in my 2 cents (well, a little more than that :p). I hope we can get this project up and running!

5150 March 29, 2014 at 4:13 pm

The NIH, Kathleen Sebelius, and President Obama should be ashamed. Truly Ashamed.

cigana March 29, 2014 at 5:04 pm

Donated :)

beaker March 29, 2014 at 8:07 pm
5150

The NIH, Kathleen Sebelius, and President Obama should be ashamed. Truly Ashamed.

Maybe we should sent them a short letter and ask them for a donation. CC a copy of letter to the press.

ggingues March 29, 2014 at 8:27 pm
5150

The NIH, Kathleen Sebelius, and President Obama should be ashamed. Truly Ashamed.

I think you need to have a conscience in order to be ashamed, KS and PO don't have that, so I doubt they feel all that bad, look what they did to the insurance market in the US under the guise of getting more people insured and better care, neither has happened on the whole (I don't know of any local CFS drs who take Medicare), exactly the opposite.

They are political animals and only care about the political implications, which is why he has unconstitutionally (read as the Law of the land, and which his opposition sought to do months ago), but only when they find it convenient) altered his law about 30 times now, and counting!

GG

aimossy March 30, 2014 at 2:35 am

DONATED!

Violeta March 30, 2014 at 10:26 am

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

Sasha March 30, 2014 at 12:02 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 at 12:20 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 at 1:05 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 at 1:24 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 at 7:45 am

Donated!

Sasha March 31, 2014 at 9:10 am

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 at 4:06 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 at 4:33 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 at 4:45 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 at 8:14 am

>>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 at 8:17 am
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 at 1:14 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 at 12:12 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.

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