• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

The Lipkin Microbiome Crowdfunding Campaign Launches!

View the Post on the Blog

An ambitious $1.27m international, patient-led fundraising campaign storms into action. Sasha invites you to join it!


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

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"
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


A member of the campaign team & 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.


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.

View the Post on the Blog
 
Last edited by a moderator:
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
 
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
 
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
 
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
 
Last edited:
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:
 
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!
 
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.​
 
@
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.
 
@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.