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Columbia University's NIH funded Center for Solutions for ME/CFS - news and updates

Announcement from Columbia.
NIH Awards $9.6 Million Grant to Columbia for a Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Collaborative Research Center

The National Institutes of Health has awarded a five-year $9.6 million grant to the Center for Infection and Immunity (CII) at Columbia University’s Mailman School of Public Health to create the Center for Solutions for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (CfS for ME/CFS), an inter-disciplinary, inter-institutional research group dedicated to understanding the biology of the disease in order to develop effective means to diagnose, treat and prevent it. This Center will be one of three ME/CFS Collaborative Research Centers (CRCs) that will be awarded, together with a Data Management and Coordinating Center (DMCC).
As many as 2.5 million Americans have ME/CFS, a debilitating disease characterized by extreme fatigue after exertion that is not relieved by rest, and other symptoms, including muscle and joint pain and cognitive dysfunction. There are no laboratory tests for diagnosis or specific treatments for ME/CFS.

The CfS for ME/CFS is led by W. Ian Lipkin, director of CII and John Snow Professor of Epidemiology at the Mailman School and is one of the NIH’s CRCs for ME/CFS research. The CRCs will each conduct independent research but will also collaborate on several projects, forming a network to help advance knowledge on ME/CFS. The data will be managed by a Data Management Coordinating Center and will be shared among researchers within the CRCs and more broadly with the research community. (Read the NIH announcement.)
https://www.mailman.columbia.edu/pu...yelitischronic-fatigue-syndrome-collaborative


Announcement from the NIH (covering all 3 research centres and the data centre).
NIH announces centers for myalgic encephalomyelitis/chronic fatigue syndrome research

The National Institutes of Health (NIH) will award four grants to establish a coordinated scientific research effort on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The total cost of the projects for fiscal year 2017 will be over $7 million, with support from multiple NIH Institutes and Centers that are part of the Trans-NIH ME/CFS Working Group.

The grants will support the creation of a consortium made up of three Collaborative Research Centers (CRC) and a Data Management Coordinating Center (DMCC). The CRCs will each conduct independent research but will also collaborate on several projects, forming a network to help advance knowledge on ME/CFS. The data will be managed by the DMCC and will be shared among researchers within the CRCs and more broadly with the research community.

“These important grants will provide a strong foundation for expanding research in ME/CFS, and lead to knowledge about the causes and ways to treat people affected by this mysterious, heartbreaking, and debilitating disease,” said NIH Director Francis S. Collins, M.D., Ph.D.
https://www.nih.gov/news-events/new...alomyelitis-chronic-fatigue-syndrome-research

Announcement from the Microbe Discovery Project.
The first ever ME/CFS Collaborative Research Centers and Data Management Center that the National Institutes of Health is funding are now being announced. A hard fought milestone – this is the beginning of the development of crucial infrastructure that has been such a long time coming for the millions who have ME/CFS.

Without out any further delay, our Microbe Discovery Project team are excited and so happy to share that the Center for Infection and Immunity research team at Columbia University have been successful! Here is the full press release from the CII:...
http://microbediscovery.org/2017/09...centers-data-management-center-announcements/
 
Coverage from Simmaron.
Ian Lipkin & Simmaron to Collaborate in New NIH ME/CFS Research Center

Simmaron to Collaborate in Columbia’s Landmark NIH Center of Excellence

Dr. Lipkin (center), Dr. Nath (NIH Intramural study director), Dr. Unger (CDC ME/CFS director), Dr. Peterson, Dr. Hornig and others.

Dr. Ian Lipkin and the Center for Infection and Immunity at Columbia University have been awarded one of three NIH grants to produce a collaborative research center dedicated to ME/CFS. Simmaron’s Scientific Advisor Dr. Daniel Peterson is a clinical collaborator on the team.

This collaboration is the culmination of a 6-year partnership between Columbia, Dr. Peterson and Simmaron Research, among others, that have produced 6 peer-reviewed publications that have identified immune changes leading to new profiles of patient subsets.

......

Lipkin’s goal is a simple one – to come up with treatments as soon as possible. During a telephone conversation, Lipkin abjured the idea of an “ME/CFS research center”; he’s not building a center to research ME/CFS, he said, he’s building a center to find solutions for ME/CFS – hence the name “Center for Solutions for Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (CfS for ME/CFS)”. He anticipated that a variety of treatments are going to be needed for different people.

The new Center has three main aims – understanding how pathogens affect immune functioning and cause disease in ME/CFS, understanding links to the microbiome and host interactions, and developing a mobile app to better understand the symptoms and stressors in this disease.

Samples may be a problem for some but they’re not a stumbling block for Ian Lipkin. He and his colleagues have built a large biobank with the support of the NIH, the Chronic Fatigue Initiative and crowdfunded Microbe Discovery Project that includes feces, saliva and blood. What he hasn’t had is the funding to test them to the extent that he’s wanted to.

Now he has some of the money he needs carry out what amounts to his grand plan to study ME/CFS. Ultimately Lipkin hopes to figure out how an infectious trigger managed to wreak so much havoc on many people with ME/CFS.
http://simmaronresearch.com/2017/10/simmaron-lipkin-nih-chronic-fatigue-syndrome-research-centers/
 

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
Thanks @AndyPR

Just read this from the Monster Study page

Dr. Lipkin also explained in the letter to the NIH that their aim is to develop a Clinical Trials Unit to:

“rigorously examine interventions, including probiotic/nutritional, biological (e.g., immune regulators; anti-cytokine antibodies), medication and potentially, microbiome-related (e.g., fecal microbiome transplantation, other) approaches.”

As the team already has close links with five expert clinics, the trials unit is well placed to recruit patients to get trials moving as fast as possible. This study would be part of the building block foundation for the establishment of a center of excellence in ME/CFS research, that will hopefully ultimately have a global component.

Very encouraging, hope that this gets priority with the new funding. Would be great to see Cosentyx or Actemra trialed
 
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duncan

Senior Member
Messages
2,240
This is somehow reminding me of throwing immune modulators at what might be persistent Lyme instead of abx. It harkens back to whether Mark Davis is right about not just ME/CFS, but Lyme.

Good motive, scary treatment if they get the diagnosis wrong.

Some might argue that it would be wise to first demonstrate conclusively that no pathogen(s) is involved before lobbing fixes our way.

I well know how desperate we are.
 
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Forbin

Senior Member
Messages
966
Like this:
Lipkin has more projects than he has money to fund them. During a Directors’ meeting at the NIH Lipkin pressed Dr. Koroshetz on the need for more funding for the research centers, but talking to him on the phone he said firmly, “We will get there.” He said his team would leverage every resource he can, and exploit every technological platform possible to solve ME/CFS.
http://simmaronresearch.com/2017/10/simmaron-lipkin-nih-chronic-fatigue-syndrome-research-centers/

And this concerning one of my favorite suspects...
He’ll also be assessing fungi.
 

aimossy

Senior Member
Messages
1,106
And this:
Lipkin’s team will be using his VirCapSeq-VERT technology to get a snapshot of all the viruses a person has been exposed to. He’ll be using technology developed using a grant from the Bill and Melinda Gates Foundation to identify the bacteria present. He’ll also be assessing fungi.

Along with immune functioning he’ll be looking at autoantibodies, a hot topic right now. Fluge and Mella are pursuing autoantibodies in their Rituximab work, and autoantibodies appear to play major role in some cases of postural orthostatic intolerance syndrome (POTS) – a condition many people with ME/CFS have. Just last year, a German study Fluge and Mella collaborated in, found autoantibodies to acetylcholine and beta-adrenergic receptors in about 30% of ME/CFS patients. The presence of these antibodies could help explain why Rituximab is helpful in some.

Noting the work Mark Davis of Stanford has done regarding T and B-cell responses, Lipkin said he hoped to work with him to use microarrays to try and determine what those cells are responding to in ME/CFS.

We haven’t thought of Lipkin as a metabolomics researcher, but he’s now engaged in no less than three metabolomics projects with Oliver Fiehn of the University of California Davis: a Simmaron Research Foundation cerebrospinal fluid project with Dan Peterson, a blood metabolomics study, and with the new research center, the first ever exercise metabolomics study.

Lipkin described metabolomics as a way to peer inside the body and see that chemicals that result from the body’s functioning. Reduced levels of neurotransmitters, for instance, could mean a balky nervous system, high levels of other factors could be suppressing the immune system, reduced levels of energy building blocks or by-products could reveal an energetic deficit affecting many functions. Metabolomics will also help him determine if the metabolites from the bacteria in our bodies could be affecting immune and central nervous system functioning.

The team will also analyze the metabolites and gene expression before and after exercise tolerance tests and an orthostatic intolerance test called the Lean Test, developed by NASA, which Dr. Bateman and the Bateman-Horne Center began piloting in an ME/CFS study. If metabolism is indeed a key problem in ME/CFS, we can expect the already striking metabolic findings in ME/CFS to get considerably more striking as exercise and standing tests put ME/CFS patients metabolism to the test.

Dana March and Tony Komaroff will also develop a mobile app called myME/CFS that will allow them to track symptoms in response to stressors and treatments. It will allow those with the disease to chart the course of their illness, and will allow clinicians and researchers to use these valuable data for insights. This will supplement work the team will be doing in mining existing databases for subtypes and risk factors.
 

duncan

Senior Member
Messages
2,240
It's worth reading the full write up by Simmaron.

Topic-heavy, detail-light, IMHO.

I am concerned by these inclinations toward autoimmune explanations when active infections have not been ruled out.

I have said before I am not certain that Mark Davis and friends have ever conclusively demonstrated autoimmune agents are at the root of chronic Lyme. I appreciate that is a popular explanation, but until persistent Bb - or any other pathogen - can conclusively be excluded from consideration, then, potentially, at least - we are just compounding one mistake on a series of others.

Feel free to substitute enteroviruses or herpes or parvoviruses or whatever for Lyme. I still subscribe to the idea that the simpler explanation should be the preferred, at least foundationally, and an infectious agent satisfies Occam's razor pretty well, even in 2017.
 

aimossy

Senior Member
Messages
1,106
The team will also analyze the metabolites and gene expression before and after exercise tolerance tests
I think this involves the Tru Culture study and also includes looking at bacteria, contaminants, toxins and even airborne ones among other things. They can expose cells to many different variants in incubator tubes to see how they react. If this link takes you to the right place - Mady Hornig talks about it in a FB live recording on Simmaron FB from 1:06:00 minutes here: https://www.facebook.com/SimmaronResearch/videos/1691287094236773/
The Tru Culture study could possibly produce very interesting results.
 
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MonkeyMan

Senior Member
Messages
405
In December of 2015, Dr Lipkin said, "We’re going to solve this in three to five years, provided the resources are made available”.

Well, now he has the resources ... or at least a big chunk of them! He is a brilliant researcher and we are fortunate to have him so committed to solving this wretched disorder.
 
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aimossy

Senior Member
Messages
1,106
Not enough resources though. We need all the centers funded properly, and more centers as well as hundreds of extramural grants funded. Edit: In my opinion in the big picture that is..
 
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I think this involves the Tru Culture study and also includes looking at bacteria, contaminants, toxins and even airborne ones among other things. They can expose cells to many different variants in incubator tubes to see how they react. If this link takes you to the right place - Mady Hornig talks about it in a FB live recording on Simmaron FB from 1:06:00 minutes here: https://www.facebook.com/SimmaronResearch/
Edit: Annoying this link will only take you to the FB and not the actual video on the Simmaron Research FB page. The Tru Culture study could possibly produce very interesting results.
I think this is the video? https://www.facebook.com/SimmaronResearch/videos/1691287094236773/
 

leokitten

Senior Member
Messages
1,542
Location
U.S.
IMO I don't think Lipkin's work is that compelling and I do not believe they will find much of anything that is actionable. The Microbe Discovery Project is interesting work from a research perspective but I highly doubt it will lead to absolutely anything actionable.

What important work has Lipkin published on ME/CFS in the last 5 or more years? Really nothing other than the cytokine work. Hornig and Lipkin's paper on cytokines was interesting but only somewhat validated what we already knew, nothing new and nothing that we could do anything with. Just like with the cytokine study, searching in our microbiome for abnormalities will not really lead to any treatment, it will just be somewhat interesting research to gain some knowledge and that's that.

I believe only two groups, Fluge/Mella and Davis/Naviaux, are looking directly at what is causing the key debilitating symptoms of this disease and have hypotheses that will lead to actionable knowledge and treatments within the next 5 years. It's a total shame that they didn't get funded by NIH and Lipkin did.
 

knackers323

Senior Member
Messages
1,625
In December of 2015, Dr Lipkin said, "We’re going to solve this in three to five years, provided the resources are made available”.

Well, now he has the resources ... or at least a big chunk of them! He is a brilliant researcher and we are fortunate to have him so committed to solving this wretched disorder.

@MonkeyMan do we know how much progress he's made in the three years since he said this?