Fatigue is the feeling of constant tiredness or weakness, which can affect anyone. In worse cases, people develop a condition called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This condition is debilitating and lacks a universally accepted definition, cause, diagnosis, and even treatment.
Now, the United Kingdom is launching the first-ever genetic study on chronic fatigue syndrome, which affects 20 million people worldwide. In the U.K., it is believed that CFS affects about 250,000 people.
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World's first genetic study
The genetic study, called Decode ME, aims to help provide a better understanding of the disease and find effective treatments. The ME/CFS Biomedical Partnership spearheads the study, in collaboration with scientists and patients who have ME/CFS.
"As someone living with ME/CFS, I'm well aware that the patient community has waited a long time for a study such as this one that has such a strong, genuine element of patient involvement. All of us involved with this research project hope that it can start to address the unwarranted stigma and lack of understanding that so many patients with ME/CFS face on a daily basis," Andy Devereux-Cooke, one of the patients leading DecodeME, said.
The world's most extensive genetic study has gained funding worth $3.62 million from the Medical Research Council and the National Institute for Health Research. The study hopes to reveal even the small differences in a person's DNA that may impact the risk of developing chronic fatigue syndrome.
The Decode ME project will recruit people with ME/CFS across the United Kingdom to take part in the study, which can be done at home. They will be asked to answer a patient questionnaire, which will be used by the CureME Biobank. They will also be provided with collection kids for them to provide samples of their saliva. The specimen will be compared with samples from healthy individuals.
"Unlocking the genetic susceptibility to ME/CFS is a key part of understanding what causes ME/CFS and the disease mechanisms involved," Sonya Chowdhury, Chief Executive, Action for M.E., and Chair of the Study Management Group, said.
"This, in conjunction with other biomedical research into ME/CFS, should finally pave the way to better diagnosis and the development of specific treatments for this debilitating disease," she added.
Finding the cause of chronic fatigue syndrome
Meanwhile, a firm joins the medical team to find the cause of chronic fatigue syndrome.
Zegami, an AI enabled image analysis provider, is partnering with an international team of medical scientists to determine the cause of chronic fatigue syndrome ME/CFS affects millions of people worldwide.
Zagami's probe to find the cause of the condition is the largest of its kind in Europe, including three research centers in Valencia and Oxford Bydgoszcz in Poland. The program will run for about four to five years.
SoftCell Biological Research funded the DecodeME study with $750,000 but is hoping to raise an additional $2 million. The firm has recently developed a protocol to culture and study hidden bacteria in the bloodstream, which is awaiting its patent. Recent evidence also shows that chronic fatigue syndrome may be caused by high levels of L-form bacteria in the patients' blood, suggesting that it may play a role in the development of the condition.
The genetic study will utilize Peripheral Mononuclear Cell (PBMC) data from the U.K. Biobank, specifically looking at samples from CFS patients, those with multiple sclerosis, and healthy people. To visualize and differentiate between these three groups, the team will use Raman spectroscopy and Zegami's software.
The scientific team hopes that they may find genetic patterns and trends in the development of CFS. Eventually, the findings of the study may pave the way to the development of diagnostic tests and treatments for his debilitating condition.
"Our hope is that if we can find out what causes this debilitating disease and a test can then quickly be developed to help identify when people are suffering from it," Karl Morten, director of graduate studies and principal investigator at The University of Oxford, said.
"With a diagnosis in many cases taking over 10 years, early detection could potentially enable patients to take steps to prevent the condition from getting worse and increasing the chances of a full recovery – the ultimate prize would be that our work would contribute to the medical profession finding new treatments and ultimately a cure," he added.
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