Patients with Myalgic Encephalomyelitis (ME), which is more commonly known as Chronic Fatigue Syndrome (CFS), believe the best way to ensure high quality ME/CFS research is funded is to raise the funds themselves. This is why, through a combination of crowd sourcing and funds raised by the patient charity Invest in Myalgic Encephalomyelitis (ME) Research UK, they are supporting a gut microbiome and ME/CFS research project based at the Institute of Food Research in Norwich UK. Daniel Vipond, a researcher and PhD student at the Institute, is currently working on the research project. He hopes that his work will identify potential biomarkers to help with diagnosis and provide insights into better treatments. 

The full title of the project is A Role for a Leaky Gut and the Intestinal Microbiota in the Pathophysiology of Myalgic Encephalomyelitis. The research involves comparing the gut microbiome profiles of a spectrum of patients suffering from ME/CFS. The patients included in this study range from those who have mild to moderate symptoms to those who are very severely affected and are bed bound indefinitely.  With this research, the ME patient charity is hoping to find ways to improve management of symptoms and potentially a cure.

The study is targeting a minimum of 140 patients and access to these patients can be difficult.  The research group is based in Norwich, the east of the UK and the group travels a long way to the specialists at a Chronic Fatigue Syndrome clinic in London. To make it easier for the patients to provide stool samples, the researchers have chosen to use the OMNIgene●GUT stool self-collection kit. Vipond commented:

“One of the beauties of OMNIgene●GUT is that it facilitates sample collection much more easily in that we don’t have to worry about storage conditions and the patient doesn’t have to worry about freezing the sample or stuffing it into the fridge. It’s also highly convenient for the patient to provide their sample (at home) and a lot more pleasant for them to be able to handle and return to the hospital.”

 ME/CFS has had a controversial past in terms of it being recognized as a proper physiological condition. It is a heterogeneous condition in which there is no definitive diagnostic test.

“It’s really quite astonishing that the disease spectrum is so vast,” says Vipond, “It could quite possibly be an umbrella for many different diseases which share the common element of chronic fatigue.”  

Some ME/CFS patients are severely incapacitated, with many unable to function physically or mentally. Some patients are bed-ridden and cannot tolerate light or sound. Some feel pain when touched in any way and others find that physical or mental activity creates an overwhelming sense of exhaustion.

Vipond stresses that “it’s not just chronic fatigue. This is why many of the patients do not like the term ‘Chronic Fatigue Syndrome’ because the condition is much more than just feeling tired, which we all do feel from time to time. This is a disease which is highly debilitating.”

A number of ME patients report symptoms of a gastrointestinal nature and suffer from food intolerances and Irritable Bowel Syndrome (IBS)-like symptoms. Many believe they have symptoms of what is called a “leaky gut” where microbes translocate the intestinal lining and enter the circulatory system where they can potentially activate the immune system. These reports indicate a possible role of the gut microbiome in ME/CFS.

Vipond thinks that “being able to characterize and understand the nature of any (gut microbiome) dysbiosis and how that works in terms of disease mechanism. . .will be very important in future studies.”

Given that Vipond has recently incorporated gut microbiome profiling to his research, he offers the following suggestions for researchers also looking to expand into the microbiome field.

“This kind of production pipeline from sampling right up until the moment of getting your data needs to be standardized so that we can compare studies and cohorts from all over the place. I think that is very important,” Vipond explains.

He is collaborating with a group from Cornell University and they are standardizing everything from sample collection, by using OMNIgene●GUT, to sample processing to sequencing. Their goal is to remove as many potential sources of variability in the data as they can.

Vipond and his collaborators are very interested to see what kind of results they get from sequencing the microbiome of ME/CFS patients. I’m sure the patients who provided the funds to support this research feel the same.