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

Andy · Oct 22, 2017

Columbia's announcement of the grant award.

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.)
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https://www.mailman.columbia.edu/pu...yelitischronic-fatigue-syndrome-collaborative

NIH announcement

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.
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https://www.nih.gov/news-events/new...alomyelitis-chronic-fatigue-syndrome-research

Microbe Discovery Project announcement

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:...
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http://microbediscovery.org/2017/09...centers-data-management-center-announcements/

Andy · Oct 22, 2017

Coverage from Simmaron (who are one of Columbia's partners)

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.
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http://simmaronresearch.com/2017/10/simmaron-lipkin-nih-chronic-fatigue-syndrome-research-centers/

Andy · Feb 12, 2019

Article in Columbia Public Health 2018 newsletter

Snow Leopard · Feb 12, 2019

Has anyone heard anything back about the formation of the patient advisory committee which took applications back in June/July 2018?
http://microbediscovery.org/2018/06...-research-center-community-advisory-commitee/

Andy · Feb 12, 2019

Snow Leopard said: ↑

Has anyone heard anything back about the formation of the patient advisory committee which took applications back in June/July 2018?
http://microbediscovery.org/2018/06...-research-center-community-advisory-commitee/
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I've messaged them asking about it.

Andy · Feb 17, 2019

Snow Leopard said: ↑

Has anyone heard anything back about the formation of the patient advisory committee which took applications back in June/July 2018?
http://microbediscovery.org/2018/06...-research-center-community-advisory-commitee/
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Center for Solutions for ME/CFS said:

We have selected our Community Advisory Council and notifications went out last week.
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Source: Direct communication with me.

Andy · Feb 17, 2019

Thread discussing a survey Columbia are running about their planned patient app, https://s4me.info/threads/survey-on...or-solutions-for-me-cfs-at-columbia-uni.8175/

Snow Leopard · Feb 17, 2019

Andy said: ↑

Source: Direct communication with me.
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Okay, thanks for letting us know. It seems quite unprofessional that there was no communication throughout the process, including no announcement that a committee has been selected.

Andy · Feb 17, 2019

Snow Leopard said: ↑

Okay, thanks for letting us know. It seems quite unprofessional that there was no communication throughout the process, including no announcement that a committee has been selected.
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Sadly, I can't disagree.

Just to expand on my "Direct communication with me", I asked them via DM on Twitter "Hi there, is there any update on your patient advisory committee that you were taking applications for last year?" on the 12th Feb, chased it up after no response 2 days later, and then received the above response late yesterday. Hopefully they will improve their interactions with patients in the future, it certainly needs a lot of work at the moment.

Andy · Mar 20, 2019

Update from the Microbe Discovery project

Microbe Discovery Project merges with CII Center for Solutions

The Microbe Discovery Project (MDP) is moving forward as part of Columbia University Center for Infection and Immunity (CII) Center for Solutions for ME/CFS.
Our small MDP team started this project more than a few years ago to increase funding and visibility as well as to advocate for more support for desperately needed excellent quality research into ME/CFS. The MDP team and our collective community raised money directly by crowdfunding to help the Columbia University CII world class research team with their projects into this disease and help raise more awareness of the desperate need for funding. These projects are going strong and we’re looking forward to the possible breakthroughs in ME/CFS diagnosis and treatment that can come from them.
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Code:
https://www.facebook.com/notes/the-microbe-discovery-project/microbe-discovery-project-merges-with-cii-center-for-solutions/2121009531301403/
https://twitter.com/user/status/1108385638884110336

Andy · Apr 4, 2019

https://twitter.com/user/status/1113800953344532480

Andy · May 9, 2019

The plan had been for the name of the The Microbe Discovery Project Facebook page to be changed over to the Centre for Solutions for ME/CFS, but Facebook wasn't happy for this to happen, so there is now a new Facebook page, https://www.facebook.com/CfSforMECFS/

Andy · Jun 15, 2019

They are also engaging with patients on Reddit

Thank you to the person on Reddit who recommends they engage with us here.

Forbin · Jun 15, 2019

Good to know. I was wondering why the link to the Microbiome Discovery Project (http://microbediscovery.org/) was no longer working...

Andy · Jun 17, 2019

Andy · Jun 17, 2019

If anybody has any questions that they want put forward and don't want to post on Reddit then post them in this thread and I'll get them passed on. Time is tight though, as I understand that these will be filmed on Friday, so you'll probably need to post in the next two days.

Jaybee00 · Jun 21, 2019

Hmm I guess I missed this? Also agree with above mentioned reddit comment that they should engage here—I don’t usually check reddit.

Three Chord Monty · Jun 24, 2019

I'm not big on people saying 'why wasn't I told,' but I am scratching my head a bit at this because I sure didn't see any mention of it anywhere. Can't imagine it was open to the public. Strikes me as kind of unusual that you put all of these well-known ME experts (plus Unger, Nath, Lipkin, etc) in a room & there isn't much chatter about it somewhere, anywhere, even on Twitter where I found this...

https://twitter.com/user/status/1142172483078053888

Andy · Jun 24, 2019

Three Chord Monty said: ↑

I'm not big on people saying 'why wasn't I told,' but I am scratching my head a bit at this because I sure didn't see any mention of it anywhere. Can't imagine it was open to the public. Strikes me as kind of unusual that you put all of these well-known ME experts (plus Unger, Nath, Lipkin, etc) in a room & there isn't much chatter about it somewhere, anywhere, even on Twitter where I found this...

https://twitter.com/user/status/1142172483078053888

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As I understand it was a meeting of all those involved in the Columbia Collaborative Research Center. Jaime would have been there as a representative for MEAction, who are on board as, obviously, patient representatives.

Andy · Jun 24, 2019

https://twitter.com/user/status/1142212426454073345

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