NIH Launches Digital Platforms for Chronic Fatigue Syndrome Research


NIH has recently launched two online digital resources to facilitate research in myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS). The tool that allows researchers to access data from several multi-omic studies on ME/CFS is called mapMECFS, and searchMECFS will provide researchers access to biospecimens and de-identified clinical information on patients.

No one knows what causes ME/CFS. The debilitating disease often starts with a cold or flu-like symptoms leading some to speculate a microbial cause. But the symptoms persist along with muscle aches and an inability to think clearly. Even simple physical movements become overwhelming. The severity of the disease varies. In the worst cases, patients become bedridden and are unable to feed themselves.

Patients are often prescribed exercise or psychological treatment propelled by misunderstandings and even stigma. Currently, there is no biomarker or diagnostic test that can detect the disease and positively identify a patient with ME/CFS.

The network behind the launch of the online resources consists of Research Triangle International (RTI), the data management coordinating center for the program, and principal investigator-led groups from three collaborative research centers—Maureen Hanson, PhD, at Cornell University, Ian Lipkin, PhD, at Columbia University and Derya Unutmaz MD, at Jackson Laboratories.

Vicky Whittemore, PhD, the NINDS program officer for the grant to RTI says “One of the goals of the whole network was to foster and encourage data sharing among research investigators working on ME/CFS.”

NINDS Staff Head Shots
Vicky Whittemore, PhD, NINDS Program Director

“The impetus for the creation of each of these tools was a little different,” says Whittemore. “If you look at the published ME/CFS studies, most of them have small sample sizes and some are replicative or repeated studies. It seems the community wasn’t aware of a lot of the data that was out there. Our first goal was to bring all the published data onto the mapMECFS platform where people could go in and search for a particular gene or protein and pull out the data that had already been published.”

Building on that, provided the three research centers involved a platform to share data. The groups working on collaborative projects deposit their data on mapMECFS so that the other centers can see and query it.

“The platform was built with the goal of having a way to make data public so anyone who has an account can access it. Or you can have a private dataset while you are collaborating and working on that data, that doesn’t become public until the investigators publish or permit the moving of that data into the public domain,” says Whittemore.

The platform also aims to incorporate the ability for investigators to share negative data that is often difficult to publish. “It would be helpful for other researchers to see that someone else did a set of rigorous experiments that were negative which would save them time and effort,” says Whittemore.

The data sharing platform, mapMECFS, also plans to build in analytical tools that will help investigators compare data across multiple different -omic studies in the database, to compute correlations and other parameters.

These two aspects—incorporating negative data and analytical tools—are in the next stages of development for the platform, says Whittemore.

“Right now, visitors to the site can only access data that has been previously published,” explains Whittemore. “But the idea is that pre-publication data can be put on the site in a private place and only accessible to the investigators concerned. That data can then be made public whenever the investigator gives us permission to do so. That can be prior to publication.” This will be similar to investigators putting their manuscripts on bioRxiv before it gets peer reviewed.

The biospecimen disseminating resource, searchMECFS, will allow researchers to query about the biospecimens available and correlating de-identified clinical data.

“The impetus for the searchMECFS was different. The Hutchins family foundation funded a study called Chronic Fatigue Initiative (CFI).” The study collected different biospecimens including DNA, RNA, urine, plasma, and peripheral blood mononuclear cells and data on demographics, clinical characteristics and patient-filled questionnaires from 201 individuals with CFI and 200 controls.

“At the request of the foundation, the clinical data was moved to RTI and the biospecimen repository was moved from Duke University where it was being housed to the NINDS contracted biorepository at Biosend at Indiana University,” explains Whittemore.

Investigators may request access to either the biospecimens from specific subsets of this cohort or the associated clinical data for analysis, or both, through searchMECFS.

“One of the barriers for MECFS investigators is access to biospecimens. We’re hoping this resource will allow more exploratory research. Additional cohorts’ biospecimens and datasets will be available in the future,” says Whittemore. National and international researchers who access biospecimens through searchMECFS will be able to upload their data on the assays or analyses they conduct onto mapMECFS.

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  1. The reason for the small sample sizes in ME/CFS research is that NIH only funds ME/CFS research 7% of disease burden. The disease burden of ME/CFS is double that of HIV, quality of life is lower than congestive heart failure, stroke, and MS. No diagnostic test, no FDA approved treatment.

    Funding should be somewhere around 200 Million a year but it it has never reached that much in all the years combined. Up until 2016, funding was about 6Million a year. It now hovers around 12M a year. In 2019, the NIH held a Conference to “Accelerate ME/CFS research”. Dr. Ron W Davis discussed the Nanoneedle as a diagnostic test. Dr. Prusty came from Germany to discuss his Mitochondrial fragmentation, then the NIH turned down funding for diagnostic research, and decreased ME/CFS funding for the years 2019 and 2020. And whoopsie daisy, now there’s a global pandemic where 10-25% of people who get Covid19 are probably going to have ME/CFS. Hmm, I wish someone funded diseases based on objective criteria instead of their biases don’t you?

    Most ME/CFS research is privately funded by patients and their families, who do not have money to spare. Our greatest hope is Open Medicine Foundation. The Scientific Director is Dr. Ron W Davis of the Stanford Genome Center (He worked on the Human Genome Project). Thanks in large part to him, progress is being made, but it’s still too slow, because ME/CFS is not funded to disease burden.

    The priority is getting a diagnostic test, and a treatment. Those two things have to occur for our world to change.

    The “prescribed exercise and CBT” for ME/CFS patients is and was dangerous. ME/CFS patients have become more severely disabled from it, and in some cases died. The cardinal symptom of ME/CFS is exercise intolerance. It’s called Post Exertional Malaise (PEM). Basically, someone with ME/CFS exerts themselves (exercise, emotional, cognitive, even small stuff like brushing teeth, showering) can cause an exacerbation of flu like symptoms. When it happens it feels like some external force is acting.. It’s often compared to being hit with a truck, being beaten up, poisoned or stabbed. Descriptions of violence. Because there’s no other way to describe that level of pain and exhaustion. You have to fix the problem first, before you can rehab it. The BPS model put the cart before the horse, and their bias above everything else and for decades, nobody questioned and scrutinized the science (or rather pseudoscience) driving it.