Our Microbe Discovery Project patient team is now into our fourth year and we exist because high quality research into ME/CFS is desperately needed.
We are now aware that Dr. Lipkin and Dr. Hornig are currently in a process of litigation. This is a very sad turn of events. However, we do not feel it is appropriate for us to comment on this other than to state that it is our sincere hope that this will be resolved as soon as possible.
The Columbia University – Center for Infection & Immunity (CII) is a world-class public health institution. Their team of scientists recognize that ME/CFS is a biomedical disease and a significant public health problem that needs thorough, well-powered investigative research. Both Drs. Lipkin and Hornig have proven their strong commitment to our cause and continue to advocate for ME/CFS. They have broken new ground, have increased the body of research in the field and will continue to advance the science of this disease.
The “monster” study that the Microbe Discovery Project (MDP) helps to fundraise for is a crucial building block in this process. We call it the monster study because it comprises a massive amount of sample and data collection and analysis. The team recently completed the year-long meticulous, well-characterized collection of samples (stool, saliva and blood) and comprehensive questionnaire data from 125 cases/125 at 4 time points, with the goal of robustly investigating priority areas of research using a systems biology approach.
The team at CII also has other, ongoing ME/CFS research and is in process of publishing. Over the last few years they have been strengthening their team with outside investigators and laying the groundwork for the development of the Collaborative Research Center, Center for Solutions for ME/CFS (CfS for ME/CFS). Investigators that have a long history of engagement with the ME/CFS community are also part of this team including: Lucinda Bateman, MD (Bateman Horne Center), Anthony Komaroff, MD (Harvard University), Susan Levine, MD (Private Practice, NYC), Jose Montoya (Stanford University) and Daniel Peterson, MD (Sierra Internal Medicine, Nevada).
The CII have also just successfully submitted their application to the NIH in response to the Collaborative Research Center RFA. If successful this would not only aid this work further but also provide the ability to hugely expand the scope of research, collaborations, partnering with the community and outreach for studies.
Our MDP teams’ focus and priority has always been to support quality, investigative research. The latest media coverage is not helpful for our ME/CFS community and places a cloud over our efforts. But, we are hopeful there will be better days ahead. There is so much potential for meaningful results from the CII efforts. So much needs to be done for this disease and the quality of work from the CII is excellent and exceptionally valuable to the field of science and to understanding the pathophysiology of ME/CFS. The outcomes are the important factors, and these are critical to improving the lives of people suffering with this disease. This body of research matters!
We understand the concerns about the research and MDP going forward. Litigation can make things difficult and the MDP team will continue to seek accurate information for supporters in key concern areas of funding and research. We feel that our supporters deserve to know whether the CII’s research in-progress, upcoming research and publications could be negatively impacted by this litigation. We will also seek information about the potential for a decrease in the pace of their work and whether or not the NIH Center application could be negatively impacted.
We will pose these and other tough questions to the CII team and will share the answers with our supporters and the community. Until the CII is able to adequately respond and clarify these points, we are temporarily suspending MDP fundraising. We will continue to share information about advances relevant to our disease from CII and elsewhere in the interim.
Thank you for your continued support and for your understanding during this time.
Here is a sample of some of the work from the Center for Infection and Immunity:
2015 Scientists Discover Robust Evidence That Chronic Fatigue Syndrome Is a Biological Illness; Immune Signatures in Blood Point to Distinct Disease Stages, Open Door to Better Diagnosis and Treatment