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Ian Lipkin & Simmaron to Collaborate in New NIH ME/CFS Research Center

“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,”

Dr. Francis S. Collins, Director of the NIH

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.

The total research grant package – $35 million for three research centers and a data center over a 5-year period – is likely the largest single infusion of NIH funding into ME/CFS research ever. The highly competitive NIH process involved 10 grant applications from across the U.S.

In addition to Columbia, the three research centers – the first dedicated NIH funded research Centers in over 15 years  – include a Cornell Team lead by Dr. Maureen Hanson which will focus on the effects of exercise on the brain, the immune system and inflammation.  Another study lead by Derya Unutmaz of the Jackson Labs will determine how the immune system, the microbiome and the metabolism interact to cause ME/CFS.

Ian Lipkin – Pathogen Hunter

Nobody is better at pathogen research than Ian Lipkin, and no subject is more important than how a seemingly innocuous infection turned into a chronic, often debilitating and life-long illness for many.

If anyone is well-situated to explore that question, it’s Dr. Lipkin. A key innovator in the pathogen field, Dr. Lipkin was the first to show that genetic testing could discover new pathogens to science. Dr. Lipkin invented MassTag PCR, the first panmicrobial microarray, and was the first to use deep sequencing in pathogen discovery.

In 2014 Lipkin’s lab received a $31 million, five year NIH grant to establish The Center for Research in Diagnostics and Discovery (CRDD). Although the CRDD is not specific to any disease, one of its key goals is a subject dear to many ME/CFS patients’ hearts: understanding why infectious agents create enormous problems in some people but not in others. For example, identifying the “host factors” which turn a usually recoverable infection in a person with ME/CFS into a “never-ending flu” will be critical in learning how to turn the clock back in ME/CFS.

More recently Dr. Lipkin’s new method of viral analysis  was described as a breakthrough for precision medicine. Acclaimed as one of ten world-changing ideas of 2015 by the Scientific American, the new VirCapSeq-VERT test is able characterize the genetic composition of any virus in any bodily fluid quickly and cheaply “with exquisite sensitivity and accuracy”. Given the heterogeneity probably present in ME/CFS, Dr. Lipkin’s focus on developing tools for precision medicine – which focuses on identifying unique factors in each individual – is probably going to be helpful indeed.

In short, Dr. Lipkin’s extensive research record, his interest in the effects pathogens have on the body, and his ability to keep himself and his lab on the cutting-edge of science made him an obvious choice to host an ME/CFS research center.

Center for Solutions for Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (CfS for ME/CFS)

“We will leverage every technological platform possible to solve ME/CFS. We will get there.” Ian Lipkin

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.

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.

Daniel Peterson, M.D.

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.

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.

Ian Lipkin, Dr. Peterson and the Simmaron Research Foundation

Dr. Lipkin’s interest in chronic fatigue syndrome (ME/CFS) – and his connection with Dr. Peterson – goes back decades. His first acquaintance with the disease, interestingly enough, came from one of Dr. Peterson’s patients way back in 1984.  Dr. Lipkin talked about that and his search for more resources in a 2014 video.

Since Dr. Lipkin re-emerged in the ME/CFS field through the XMRV studies, Dr. Lipkin and the Simmaron Research Foundation have collaborated on several ground-breaking studies. The Lipkin/Hornig blood cytokine study identified, for the first time, evidence of dramatic immune upregulation early in the disease followed by what appears to be an equally dramatic period of immune exhaustion.

A landmark cerebral spinal fluid study using Dr. Peterson’s samples found the same.

Next, Dr. Peterson’s years of experience informed another spinal fluid analysis which, for the first time, identified an “atypical” subset of ME/CFS patients who had dramatically different immune findings. A follow-on cerebral spinal fluid study examining metabolomics and immune factors is underway by Simmaron and Columbia.

The Atypical Subset Study

Peterson’s Atypical Subset Opens New View of ME/CFS in Columbia/Simmaron Publication

Advocate and Messenger

Dr. Lipkin is one of a very few ME/CFS researchers to aggressively advocate for this disease, and he acknowledged the ME/CFS community for its work.

“The pace of research has increased, thanks largely to advocacy by the ME/CFS community and the generous support of the Hutchins Family Foundation. We are grateful to NIH for recognizing the potential of this ME/CFS CRC to capitalize on this momentum, bringing together the very best clinical and scientific talent and technology to do work needed to turn a corner on this disease.” Ian Lipkin, MD

The Lipkin team will also connect with the key players in the digital online media (The Solve ME/CFS Initiative, ME Action and the Microbiome Project) to disseminate the group’s work, engage patients and break up the stigma surrounding ME/CFS.

“One of our goals is to dissolve barriers between scientists, clinicians, individuals with ME/CFS, and advocates. By connecting with the global digital ME/CFS community, we aim to increase the visibility and reduce the stigma of what many have described as an invisible population.” Dana March, assistant professor of Epidemiology at the Mailman School and deputy director and administrator of CfS for ME/CFS.

Simmaron Research is proud of its longstanding collaboration with Columbia, and we congratulate all of the collaborators, patients and advocates who worked hard for years to make this landmark investment by NIH in ME/CFS research centers happen.

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  • konijn

    October 7, 2017 at 9:18 pm - Reply

    I am really glad with every research and really believe Ian Lipkin is a great scientist, but what with the severely ill who can not do an excercise test? the bedridden or homebound ones?

    If I am right, 2 off the 3 grants that were given by the NIH are with an exercise challenge and in all 3 you have at least go to the hospital. I even could not do that.

    I feel it as if the homebound and the bedridden ones are the really forgotten patients.

    • Jane

      October 8, 2017 at 4:45 am - Reply

      Konijn, besides these centers focusing on these topics, Dr. Davis has done a small extremely in-depth study of severely ill & homebound, and the group in the UK that just got another NIH (U.S.) grant for 2+ million I understand have also been studying severely ill homebound patients as a component of their research. So, it is being addressed by a couple of research groups. Also Arizona State University was recruiting for a test that those stuck at home can do. They mail kit in envelope to you and you mail back…postal carrier can pick up. Was just a prick of finger yourself and blood drops on a special card. Then immune factors measured by high tech bio analysis machine. Measured antibodies and peptides of ME vs Fibromyalgia vs controls. The first phase of that study has concluded, but they are trying for a bigger grant and planning an expanded study. From start to finish the previous study was under a year apparently? A lot of interesting work going on. I know lots of abnormalities will be found with this targeted research, but I also hope the cause or perpetuating factor(s) is discovered and can be addressed. I think the Dr. Naviaux Cell Danger Theory and Dr. Sharon Meglathery’s RCCX (gene module) Theory seem pretty plausible. They seem like related ideas.

      • Cort Johnson

        October 8, 2017 at 5:22 pm - Reply

        That’s great to hear Jane and thanks for sharing that about ASU. In general I think the Naviaux and Meglathery hypotheses do share common elements. A blog on Sharon’s hypothesis will be done hopefully in the next week or so.

      • konijn

        October 9, 2017 at 8:26 pm - Reply

        I tried to find who did the severely ill studie at Arizona State University and in England but could not find anything. Please can you help me?

    • Cort Johnson

      October 8, 2017 at 5:17 pm - Reply

      The logistics challenges are definitely there – and they won’t participate in this nor 90% of other studies but the severely ill are finally getting at least some attention. Ron Davis and the Open Medicine Foundation are doing a several million dollar study on the severely ill, they are an important part of the big Mike Snyder study at Stanford, and the CDC’s Multi-site study is including them as well.

      It’s an excuse but it is harder and more expensive to find severely ill patients and then go to their homes to interview them and collect samples and there some tests (brain scans, exercise studies) need to be done in a hospital or lab setting.

      However, once they do start to track things down hopefully it will just take a blood test to assess whether what they’ve found is present in the severely ill.

      It’ll be very interesting to see what these studies turn up.

      • konijn

        October 13, 2017 at 9:48 pm - Reply

        I tried to find who did the severely ill studie at Arizona State University and in England but could not find anything. Please can you help me?

  • s48

    October 8, 2017 at 12:56 am - Reply

    konijn , I’m agree with you 100% . I’m bedridden and it’s impossible for me to go see a doctor . For me to make an appointment is a fantasy , because the chances , that I’ll be able to keep it very small , not even realistic . We are the forgotten patients .

  • konijn

    October 8, 2017 at 8:50 pm - Reply

    thank yoy jane and cort for the summary. I am so severely ll that if I can read, I forget what I have read. I knew about ron davis an the omf (am supporting them to), but I did not know or forgot about the other ones you mentioned jane.

    thank you s48 for the understanding. I hope you survive untill there is treatment because I am still going worse and worse. Hope you are stable! And have people around you who help you, love you, understand you and support you. big huggs

  • aquafit

    October 9, 2017 at 2:14 pm - Reply

    Dr. Lipkin is on the right track in studying acetylcholine, glad he’s gotten results. IMHO this points to a collagen/connective tissue problem. It’s not the infections, bacteria, fungi, etc. It’s that we have an immune system that has a hard time maintaining its own structure (bone marrow, plasma, etc.) so it has a hard time doing its job. Big clue is the high amount of Ehlers Danlos patients with ME. And sjorgens, etc and other “autoimmune” conditions. When it isn’t a virus, bacteria, fungus, mold, etc. it’s petrochemical or coal tar derivatives wreaking havoc on the body. It’s incredible how many products that we eat and wear are derived from these fossil fuels which are nerve toxins in their raw state. They’re deemed “generally safe” and those of us with connective tissue that makes for less efficient immune systems are simply viewed as collateral damage in the modern era, not worth even studying so we know what’s going on with us from a scientific viewpoint.

    • ems

      December 15, 2017 at 7:23 am - Reply

      I think you’re on to something… pollution really flattens me.. the pollution in california (where I live) from the wildfires this fall and winter has made me miserable… same during the drought years.. I have terrible joint stiffness and pain, but nothing that shows up on a rheumatologist’s scans or tests.. other than high CRP or SED rate…. Fish oil helps – especially DHA… If it is an acetylcholine problem, what can one do? Also, does that mean that alzheimer’s is inevitable?

  • aquafit

    October 9, 2017 at 2:16 pm - Reply

    BTW, ATP cells are stored in adipose tissue – which is a connective tissue.

    • ems

      December 15, 2017 at 7:25 am - Reply

      interesting… I read that Maureen Hanson is doing research on lipid metabolism… do you know anything about any of the links between lipid metabolism and CFS? I would love to know more

      • aquafit

        December 16, 2017 at 8:01 pm - Reply

        Sorry to hear about the suffering you’ve experienced due to the wildfires in California. I hope you find relief and the fires subside.

        Check out Ehlers Danlos Syndrome and Heritable Connective Tissue Disorders. There’s a forum of many knowledgeable EDS and HCTD patients at at the Ehlers Danlos Society section. My joints hurt when I inhale too much Pinesol or other nasty cleaning fluids. Magnesium and tea (which has thiamine) and vitamin C help me a lot. Many people who have EDS (but don’t have the gene necessarily, as the the gene(s) for hypermobile EDS is not known) also have chronic fatigue. It’s my thought that those of us who find ourselves here likely have hEDS or a type of EDS with a known gene(s).

        Here’s some reading to get you started – either this will make sense to you and you’ll feel like it’s a fit or it won’t. Keep in mind that the immune system does not just respond to viruses. It also responds to bacteria, mold, chemicals, drugs (especially anti-cholinergic) pollution, hormones, etc. And acetylcholine is involved in the making of collagen.

        • Cort Johnson

          December 16, 2017 at 10:02 pm - Reply

          Thanks for continuing to spread the word on EDS Aquafit.

          • aquafit

            December 17, 2017 at 12:46 am -

            I think it’s vital to share information across the arbitrary lines of distinction that the medical field makes. BTW just so you know Cort, a few of us are sharing information from and crediting your websites as well.

  • konijn

    October 9, 2017 at 8:13 pm - Reply

    I tried to find who did the severely ill studie at Arizona State University and in England but could not find anything. Please can someone help me?

    • Lynn

      December 11, 2017 at 12:46 am - Reply

      Dr. Phillip Stafford at the Biodesign Center at ASU.

  • Pam

    October 10, 2017 at 2:15 am - Reply

    Thank You all for your input. While I do not think of myself as severely ill, I am. It is becoming more and more difficult for me to keep doctor’s appointments, go grocery shopping (I do a great deal of on-line/home delivery shopping), even a “day out” shopping (yesterday I was “out and about” for 3 hours) finds me today, unable to do much of anything except sleep! I would like to participate in studies of ME/CFIDS, Fibromyalgia, Lupus. Is anyone aware of an on-line source where one might register for possible in home trials/studies? May there, soon, be medical findings or research results, something that explains, how, why, if potential remission and/or complete recovery can be realized. Soft hugs to all!

  • Matthias

    October 14, 2017 at 5:51 am - Reply

    This is promising work.
    My ‘latest theory’ on CFS is that it is autoimmune. A trigger sets it off.
    Whilst the autoimmunity is ‘permanent’ (but hopefully reversed one day soon by a treatment), the immune system while ramped up early in the disease then ramps down. As per recent research.
    Whether the immune system is ramped up or down, is largely irrelevant to symptoms. It’s the autoimmune factor that is permanent and critical.
    For me, my early CFS had me with overactive immune system and with lots of allergies. Over time my immune system calmed down, and now I have very few allergies (interesting, the terrible hayfever I used to have – which pre-dated CFS – is now almost completely gone).

    Really interested to know if others have had marked improvement in allergies over time with their CFS.

    Note – my fatigue is the one thing that hasn’t resolved with time (makes me think a permanent autoimmune legacy, maybe with regard to acetylcholine?).

    • gary

      January 16, 2018 at 5:08 pm - Reply

      I have noticed that my hayfever has stopped. I often had it before CFS and now never. Just thought I would let you know someone else had the same occur.

  • Jeannie

    October 17, 2017 at 7:38 pm - Reply

    What’s the best place to make a donation to for Dr. Lipkin’s work – Simmaron or Columbia, or does it end up in the same place?

  • Linda Julian

    April 5, 2018 at 7:12 pm - Reply

    I am happy to learn of this research for solutions. Also, the collaboration seems so beneficial, building on what has been accomplished and taking it even further.
    I do very strongly feel that older patients do need to be studied for their past medical and environmental history.
    I had glandular fever at about age 10, and mono at about age 19. I am now 70 and have been a patient of this debilitating disease for many years.

  • Linda Julian

    April 5, 2018 at 7:17 pm - Reply

    I strongly feel, as I am certain others do, that we need a high profile, or political sponsor. Too many have never heard of this. I have med medical professionals who have no knowledge of this disease.
    FYI – I am located in the US and WA state is sorely lacking in knowledge. One of the best physicians I have found over the past 20 years was Dr. Baca in the small city of North Platte, NE. Kaiser Permanente offers no help with this.

    • Cort Johnson

      April 5, 2018 at 8:18 pm - Reply

      Glad to hear about Dr. Baca – thanks for passing his name on….