There has been another quick run of funding and research news in the ME/CFS community. Some frustrating, some hopeful… Bureaucracy While so many patients remain redundant from life and suffering without appropriate care and support, bureaucracy is in no hurry. Dr. Francis Collins Director of the NIH has responded to a recent Congressional letter with no new information, exceptRead more about NIH moving at bureaucratic pace while ME/CFS metabolomics findings get hotter![…]Read more NIH moving at bureaucratic pace while ME/CFS metabolomics findings get hotter!
Donate to Columbia University Center for Infection and Immunity ME/CFS research. Your donations count!
Dr. Ian Lipkin & the Center for Infection and Immunity emblem
The Center for Infection and Immunity (CII) at the Mailman School of Public Health in New York is internationally recognized as the world’s largest and most advanced academic center in microbe discovery, identification and diagnosis. Dr. Lipkin and Dr. Hornig and the CII team are thoroughly on the case of ME/CFS but they need our community support.
Research needs to get moving for people with this illness now – and while advocates work so hard to push for appropriate levels of funding for ME/CFS with government agencies and lobbying – we can also make huge gains in research by donating! Globally, and together we can keep quality research programs going and invest in new projects. We’ve done that so far, and we can keep on investing in our future. Donations of all sizes are helping CII push forward with their program. We are so grateful for the support our community has given to these fantastic researchers – we need them on the case!
There is a shocking lack of good research into ME/CFS, where funding has been akin to a wasteland. In clinical care settings around the world patients are also floundering in a similar wasteland. Great research comes at a very large cost and ME/CFS research needs all the help it can get. There are no FDA approved treatments for this illness!
“ME/CFS is a global problem that we need to address – it robs people of the most productive years of their lives, it causes immunological dysfunction, profound fatigue, cognitive dysfunction. It really destroys peoples’ lives. It is underappreciated, it is underfunded, and with your support we hope to find solutions to this crippling problem”. ~Dr. Ian Lipkin
Dr. Lipkin, Director of the Columbia University Center for Infection and Immunity and Dr. Hornig, Director of Translational Research and their team are actively engaged in state-of-the-art research into ME/CFS. They aim to provide insights into the disease that will lead to the development of diagnostic tests and eventual treatments. They have already produced a landmark study that showed that the cytokine profile of ME/CFS patients is abnormal and changes markedly after three years, providing more robust evidence of the biological basis of ME/CFS. These findings made international headlines, also being reported in the New York Times and The Wall Street Journal.
Having these world class researchers involved with ME/CFS research is groundbreaking in itself for the ME/CFS field of science and we applaud their commitment to this illness. CII staff have even donated their time to work on some ME/CFS studies!
These researchers are constantly building on their current program of work, are collaborative and known creative problem solvers: just look at their exceptional work in this article ‘Hunting down the cause of ME/CFS and & other challenging disorders’ by Simon McGrath. They are keen to start working on biomarker validation studies and develop an ME Center of Excellence! This team has strong ambitions and an equally strong ability to achieve these and have committed a significant percentage of their resources at CII into an ME/CFS program of research. In fact, Dr. Lipkin recently stated that he believes that we can solve ME/CFS in 3 to 5 years provided the resources are made available, see Cort Johnson’s impressive article about Dr. Lipkin’s talk at a recent Simmaron Research event.
Current program of ME/CFS research
Analysis and Testing
The researchers are working on figuring out one of the central problems in ME/CFS: “heterogeneity”. This basically means there are probably many different subgroups of patients, some of who are likely to have different diseases, all caught under the current ME/CFS umbrella. The team are working with 5 different ME/CFS specialist clinicians at different sites across the US, along with other US researchers. They hope that the foundation they develop for a Center of Excellence in ME will ultimately have a global component.
They are implementing cutting edge technology and science looking into pathogen discovery; immune signatures; gene expression and variants; antibodies to viruses, bacteria and fungi that lead to autoimmune type of responses as well as phage approaches for anti-pathogen antibodies. Other high-tech approaches, some of which were developed by Dr. Lipkin and his lab include, MassTag PCR – High throughput sequencing, the new VircapSeq – VERT test, a 51 cytokine and chemokine immunoassay panel, metabolomics and proteomics.
They are investigating the oral pharyngeal (mouth and throat) and gut microbiome, spinal fluid and analysing gene expression. This is a phenomenal amount of work involving many people with carefully characterized cohorts from the ME/CFS expert clinicians that they collaborate with. The programme entails a huge amount of investigation and discovery. The research will help reveal the molecular detail of what might be going wrong for people with ME/CFS.
Pure Pathogen Discovery Projects
National Institutes of Health/NIAID 150 cases, 150 controls: blinded multisite viral analysis (XMRV/pLMV)Samples still banked, able to be used.
With Dr Montoya, Stanford University 284 cases, 196 controls: pathogen discovery
Chronic Fatigue Initiative 200 cases, 200 controls: pathogen discovery, immune signatures, metabolomics, proteomics. Subset of 50/50 controls: microbiome, longitudinal immune analysis (12 – 18 months after 1st sampling )
Cerebro spinal fluid study, with Dr Petersen 60 cases, 60 multiple sclerosis/no disease controls: pathogen discovery, immune signatures, proteomics and metabolomics. Cerebrospinal fluid bathes the brain, and these samples give a unique window on what’s happening in the brain.
Dr Peterson “unusual” cases 10 cases, 10 matched controls.
TruCulture exercise study 23 cases, 23 controls ( in development )
Large Microbial Discovery and Immunity study in ME/CFS
National Institutes of Health/NINDS/Microbe Discovery Project (in progress) 125 cases, 125 matched controls: sample collection in blood at 2 time points, stool and saliva at 4 time points over a year. Microbiome (bacteriome, mycobiome, virome), proteomics, metabolomics, immunology, genetics and epigenetics. Foundation for the establishment of a Center of Excellence. Collection has been funded through NINDS and donations, as well as heavily subsidized by CII. Read more about this massive study that needs our community’s support here.
Microbial Discovery and Immunity study!
Please DONATE to help make this quality research into ME/CFS happen!
Your donations count! CII continues to leave no stone unturned and is fundraising through all possible avenues! We can help them move us forward – which will lead to bigger findings and more government funding and grants. We have no doubt that the Columbia CII team will make very significant breakthroughs for ME/CFS!
See the resources page for more background information and links. Thank you so much for your continued support!
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Disclaimer: All content has not been reviewed or approved by Drs. Lipkin and Hornig and the Center for Infection and Immunity, Columbia University; images are courtesy of CII.