Kickstart for Lipkin and Hornig's BIG Microbiome Study

Share on facebook
Share on twitter
Share on email
A larger, stronger, even more robust microbial diversity and immunity study is starting at Columbia Center for Infection & Immunity (CII) for ME/CFS!

The great news is – very recently Columbia CII received an NIH grant to investigate microbial diversity and immunity in ME/CFS.
However, it’s not all great news for Columbia’s big microbiome study. What is fantastic is that they’ve expanded the study from 100 cases plus matched controls, to 125 of each, now sampled at four different times. They are collecting fecal samples for a gut microbiome but also saliva for an oropharynx microbiome and blood so they can study pathogens as well. Plus the NIH have funded them with nearly $500,000 (after overhead is taken out).More information at NIH.gov
The not so great news is that the NIH only funded them for a single year, not the five years Columbia requested, for collection only, and the money doesn’t nearly cover the patient recruitment and sample collection costs. In fact, they felt it was important to take into account microbiome changes over time as this may give valuable insight; hence the expansion from two timepoints to four timepoints of collection over the one year period.
The Columbia team convened a group meeting with the clinicians involved, discussed and agreed together on the plan to collect samples at four different times across the year. In total, that’s 125 patients and 125 matched controls (250 subjects), with three sample types, collected over four times in one year. That adds up to a thousand fecal samples, and the same of blood and saliva – three thousand samples in all. This is now a ‘huge’ study, and the costs have grown with it.
This really is going to be a brilliant, larger, stronger, more robust study – that will generate a plethora of data!
canstockphoto22868074
Recruiting the patients and controls, and collecting all the samples from them will cost up to a million dollars. The NIH grant won’t even come close to covering all of that. Luckily, an anonymous donor generously donated $0.5 million to CII’s work, which will go toward sample collection. On top of that, generous CII staff will donate their efforts in-kind for the duration of the study. Many thanks to CII personnel – this is truly humbling. This is all helping to enable this work to happen faster.
And of course, sample collection is only the start! The samples have to be carefully tested using high-tech processes and the data analysed, an additional huge undertaking.

Change of plan for crowdfund donations

CII announced in February that they would use the crowdfund donations of approximately $220,000 to fund a smaller oropharynx microbiome study, and had already started selecting patients and controls for this work. However, as things have developed, they now believe the best way to use the crowdfund money is to start analyzing the sample from the new, monster microbiome study. This is just a fraction of what they need to complete the study, but it is an important, crucial start!
Columbia CII will continue to apply for grants, and fundraise through all possible sources for the analysis portion of the study!
We are so ecstatic that this work has been kickstarted! Work will begin in the coming months, and will be carried out by this world class research team. A truly collective effort from the CII team and the ME/CFS community has made this progress possible! We are so grateful to every single person who has contributed to make this happen. This is fantastic and CII are excited to begin this work.
– The Microbe Discovery Project team
Please consider making a donation to this great team of ME/CFS researchers at Columbia Univerity Center for Infection and Immunity.

Share on facebook
Facebook
Share on twitter
Twitter
Share on whatsapp
WhatsApp
Share on google
Google+
Share on email
Email

2 thoughts on “Kickstart for Lipkin and Hornig's BIG Microbiome Study”

  1. Awesome! I am even in awe of the NIH but more so of Columbia and the lengths they have gone to to help this community when so many don’t seem to bother. Truly inspiring. As are the efforts of the Microbe Discovery Team and the community of donors and supporters. Especially thanks to the anonymous donor. Fabulous effort. This story deserves to be headline news in all media outlets around the world.

  2. Thank you for providing the context to these funding announcements we’ve been hearing about.
    This team has an excellent plan and I hope the NIH properly fund the next phases of this big study. It would be “criminal” if they didn’t.
    A huge thank you to the donors & to their team for their in-kind donations to make this happen!
    One question — is this requirement of the researchers having to do their own fundraising plus this piecemeal (per phase) funding a typical NIH funding arrangement for other (non-ME) research?

Leave a Comment

Your email address will not be published. Required fields are marked *

Latest News

Sign petition To Fix ME/CFS tracking In US!

In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the

Read More »

NICE announces roundtable event to ensure implementation of ME/CFS guideline

NICE announced today that it will hold a roundtable in September as the next step in the publication of the ME/CFS guideline. The roundtable will include representatives from patient organisations and charities, relevant professional societies, NHS England and NHS Improvement, NICE and the guideline committee. It aims to, “better understand the issues raised and determine

Read More »

#MEAction & 6 ME Orgs Call for CDC to Change How it Tracks ME/CFS

Together with six other organizations, we have submitted a proposal to the National Center for Health Statistics (NCHS) to add myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to the neurological chapter of the International Classification of Diseases (ICD-10-CM).  Today, ME/CFS does not exist in the US ICD-10-CM. Instead,  most US doctors assign the code for chronic fatigue

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top