“I think that the microbiome is going to be where the action is [in ME/CFS]” – Ian Lipkin
What do the Director of the NIH, Francis Collins PhD, the P2P Panel, and Ian Lipkin MD, virus hunter extraordinaire, all have in common? They all believe studying the microbiome living in our guts is a high priority.
Lipkin’s doing all sorts of projects on ME/CFS but the gut project is the one that comes up again and again
The list of projects Lipkin, Hornig, and the Chronic Fatigue Initiative are working on is long. It includes looking for viruses in white blood cells, doing gene expression studies, measuring immune factors in the blood and doing proteomic and metabolomics studies, but the study Lipkin and Hornig keep circling back to is the microbiome one.
Why? They think compounds produced by the gut may very well be spreading through the blood and into the brain and causing “all sorts of curious diseases”, and that includes ME/CFS.
Lipkin is so eager to dig into ME/CFS patients’ guts that he’s applied twice for NIH grants (only to be rejected both times, for different reasons).
Every bit helps
The man is nothing if not persistent, though. This busy, busy virologist is continuing to speak out on behalf of studying ME/CFS. He’s got Director Collins pushing ME/CFS microbiome studies. Despite the lack of research studies done on the gut thus far, his partner Mady Hornig got the P2P panel to shortlist the microbiome as a priority project. (Now, that’s persuasion!)
If Lipkin and Hornig haven’t gotten the big NIH grant they and we want, they have another ace in the hole – the Microbe Discovery Project, which means “us”. Created by people with ME/CFS, the Microbe Discovery Project to crowd-fund Lipkin and Hornig’s gut work has raised about $160,000 from over 1,000 donors.
Let’s get them to $200,000 this holiday season and give the top viral disease hunter in the world, Ian Lipkin, the ability to dig just as deep into the guts of ME/CFS patients as he can. Who knows? The answer could lie there.
Learn more about the Microbe Discovery Project here. Make it a good Christmas for ME/CFS, and a bad Christmas for the microbes that are perhaps at the heart of ME/CFS by supporting the
Microbe Discovery Project
Check out an appeal sent out by Ian Lipkin and Mady Hornig below
Ian Lipkin and Mady Hornig on the Microbe Discovery Project
December 12, 2014
“We never lost focus on our commitment to continue to make breakthroughs in the area of ME/CFS research.” – Ian Lipkin and Mady Hornig
Dear Friends:
It’s been nearly a year since the Microbe Discovery team launched the ME/CFS microbiome crowdfunding campaign. To date, more than $153,000 has been raised from nearly 1000 donations in 25 countries. We want to take this opportunity to thank our supporters for all your fundraising efforts, donations and general support and encouragement. And we’d like to especially thank the crowdfund team for their hard work, creativity, and financial support.
It’s been a productive year for the Center for Infection and Immunity (CII). While our research on emerging infectious disease outbreaks such as MERS and Ebola was particularly demanding, we never lost focus on our commitment to continue to make breakthroughs in the area of ME/CFS research.
With the ongoing collaborative support from the Chronic Fatigue Initiative, Simmaron Research, and Edward P. Evans Foundation, our research team has recently discovered differences in markers of immunity and metabolism in ME/CFS that may relate to disturbances in the gut microbiome. Details will be published in 2015. We look forward to sharing these findings with the ME/CFS community.
We presented our work at numerous worldwide conferences including:
- IACFS/ME Scientific Conference in San Francisco, CA in March
- 9th Invest in ME Research International ME Conference 2014: Synergizing Research into ME in the UK in May
- ME/CFS Research Collaborative Scientific Conference in the UK in September
- National Action Center for CFS/ME in Oslo, Norway in November
- NIH Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Bethesda, MD in December
Could next year be the year we discover the microbes causing so distress in ME/CFS?
We continue to raise awareness for our cause in the media and were thrilled that Buzzfeed and Columbia University highlighted our work and community partnership. We wish to thank Phoenix Rising, Cort Johnson of Health Rising, and Simon McGrath for the invaluable support and continual coverage of our research efforts.
Thank you again for your generous, ongoing support. Best wishes for a wonderful holiday season.
With our deepest appreciation,
W. Ian Lipkin, MD Mady Hornig, MD
I’m very curious about this focus only because of the new kid on the block with gene therapy research: CRISPR/CAS9. As CRISPR/CAS9 is simply a philosophy of snipping away DNA segments from a biological entity. “Gene-editing” if you will. But, this philosophy was derived from nature, where certain bacteria were witnessed to have the ability to snip-away various genes from harmful viruses, thereby inactivating them from causing harm.
Given this dynamic, I wonder how and whether our own gut bacteria have/had the ability to do the same, there serving as integral mechanisms of our immune system, especially against (latent) infecting viruses.
Remember those optical illusions? Old woman’s face is the black part; young attractive woman’s face is the white part. Or there is a vase and an ‘old crone’. You’ve all seen them.
This research into the microbiome is like those. The answer isn’t necessarily going to come from what is there. It’s just as likely to come from what is not there.
What is not there? And why not . . . ?
Start there.
I’ve said this before….instead of reinventing the wheel these people should be piggybacking on the work being done by the American Gut Project…these folks are about a decade ahead of anything this team is going to come up with.
I agree with piggy backing the American Gut project. Is the crowd funding for Cfs similar to American guts funding? So can I contribute and get my stool tested at same time? That sure would motivate me to contribute- likely several times over a period of time! Besides, how many of us with CFS have already contributed financially and with sample to the American Gut project. I think the information will be key to determining how to correct the underlying cause of our illness.
Not only the answers for ME/CFS but most all the degenerative disease answers lie in the gut.
Pity, the NIH won’t fund this project but Big Pharma is the NIH authority, so, no need to keep playing that broken record. If that where not the case, this problem may have been solved 20 years ago.
The compound in our guts that may be spreading through the blood and brain causing “all
sorts of curious diseases”, including ME/CFS may very well be excessive amounts of
serotonin. Neurons lining our guts are so extensive some scientists have nicknamed it
our second brain. The little brain in our gut ( enteric nervous system) is connected
with the big one in our skulls and partly determines our mental state and plays key
roles in certain diseases. Ninety-five percent of the body’s serotonin is found in the
gut. Serotonin is passed between key cells in the immune system, and is specifically
used to activate an immune response. Too much gut-produced serotonin, in a genetically
susceptible individual, could possiby bolster immunity to a point where it triggers an
autoimmune disease.
Because some cases of ME/CFS begin with a flu-like infection, several viruses have been
studied as possible causes of ME/CFS. None has yet been found to be the cause of
ME/CFS; many are relatively common in the general population and researchers have been
unable to link any of them to all cases of ME/CFS. What does a virus have to do with
alcohol intolerance, multiple chemical sensitivities, exercise intolerance, insomnia,
sensitivities to prescription medications, migraines, pain syndromes, low blood pressure
and low circulating blood volume? Why are women four more times more likely than men to
develop ME/CFS? Do some viruses prefer women over men?
One day it will come down to a genetic predisposition towards autoimmunity and many,
many triggers as the cause of ME/CFS. In some people that trigger may very well may be
a virus; or it may be a toxic metal exposure, or a chemical exposure, vaccinations,
stress, trauma, smoking, nutritional deficiencies, over-exercising, anything that causes
the immune system to become over-stimulated invoking a persistant immune response in the
vulnerable person. It could be any event that depletes dopamine stores (the brake) and
creates serotonin dominance up-regulating the immune system.
Interesting! Didn’t know any of that. Thanks Rachel – hey, if that’s going on, I imagine Lipkin will pick up on it if we can get this study funded.
I hope so, Cort.
fyi, Ian Lipkin and Mady Hornig have both flagged up tryptophan (a serotonin precursor) as an molecule of great importance in their study of the gut and the metabolome.
I don’t think the gut is the primary problem because ME don’t start with gut problems in the first place. It make no sense. How do you connect beginning ME with EBV en the gut?
I think the answer to this is that it’s never just EBV that causes CFS – otherwise everyone who gets mono/glandular fever would have CFS.
It could be that gut problems make impair the immune system’s ability to deal with the virus effectively or that damage to the gut caused by severe cases of infection is responsible for ongoing symptoms (keeping in mind that according to the Dubbo studies those with the more severe cases of mono/GF are at greatest risk).
The gut…yet another distraction. It’s the brain, stupid!
But gut issues have been implicated in a range of conditions that are primarily neurological!
Or maybe it’s the gut then affecting the brain, either via metabolites trafficking into the bood, or via the immune system
It’s the gut! No, it’s the brain! No, it’s the brain-gut! No, it’s the gut-brain!
It’s microbes! No, it’s the microbiome! It’s mold! It’s Lyme! It’s a herpesvirus! No, it’s an enterovirus!
Who cares.
Figure out what’s wrong and come up with a toxic treatment so I can go back to work, travel, and have fun again.
It’s a retrovirus!
This disease is so complicated. At this piont the only good objective thing they found is the microglia activation in the brain (CPET, Japanese study). If this study can be replicated then we have validation. This can be the starting poin to look further, what activate the microglia cells? but alos the activated microgliacells are not only found in ME it is also found in bipolar disorder. We speculate and speculate….. i think they will never find the real cause for ME… but let me be wrong!
Thanks for the appeal, Cort
The latest total is:
$160,822 from 1,022 donations
Every donation is greatly appreciated, thanks to everyone who has given and please do give if you can.
Happy Christmas
Simon
I believe the gut holds some answers and I believe in Dr. Lipkin so I made a donation.
Thank you!
We didn’t expect to get an update (from Columbia University, who handle all donations direct) on Christmas Eve but the total is still going up – we just got this:
The latest crowdfunding total is: 163,023 from 1,039 donations.
Thanks everyone.
You can donate at http://www.bit.ly/DonateToDrLipkin
Latest crowdfund update from Columbia University (Dr Lipkin’s base, they process all the donations direct)
Latest update:
To date the total raised is $163,023 from 1,039 donations.
Thanks everyone!
Donate here: http://www.bit.ly/DonateToDrLipkin
Cort is it an idea to start a poll for ME patients whether they suffered from intestinal problems before their illness?
Interesting question. Having had Cfs like symptoms in my 20s which I recovered from after 6 months and then reacquainting new symptoms in my 30s after having contracted gut issues in 3 rd world countries that were “fixed” by antibiotics. 18 years later, I am still struggling with it.
Interesting question.
Why, after CFS since age 4/5 do my symptoms almost disappear
after not eating for 3 days as no med/supplement works?
Those who claim the guy has no relation to our symptoms need
to do some reading.
Whatever the compound that Lipkin finds, it will have
vast implications for diseases/syndromes of a wide spectrum
and will likely open the door to a whole new way of approaching
these in terms of testing and treatment.
Lipkin is an internationally recognised virologist,
would he really be chasing the gut if he didn’t think
there would be light at the end of the tunnel?
^^^^
“Gut” has no relation need to do some reading…”
Here’s a link to get you started:
http://www.mecfs-vic.org.au/sites/www.mecfs-vic.org.au/files/Article-DeMeirleir_Presentation_Oct09.pdf
Hi cort recently came across this and wondered if it offered new hope for finding out if viruses are still present in ME sufferers http://www.nytimes.com/2014/06/05/health/in-first-quick-dna-test-diagnoses-a-boys-illness.html
If you could get Lipkin to comment that would be great
December 31st, 2014:
Total raised so far: $169,828 Thank you for all the 1,072 donations!
We know that the total to date doesn’t include a number of donations still in the banking ‘pipeline’ and we expect the total to rise further still. And if you do want to make a New Year donation it will still be counted.