According to a recent article in The Guardian, funding received from the NIHR and Medical Research Council will facilitate the launch of the largest genetic study of chronic fatigue syndrome (CFS) in the world.
An estimated 250,000 people are affected in the United Kingdom, yet very little is known about this complicated disorder. As yet, no treatment has been found to be effective.
In the United States, most medical schools have yet to include ME/CFS in their curriculum for physicians. More education is needed in order for patients to receive a proper diagnosis and the appropriate care.
Researchers expect to collect about twenty thousand DNA samples from people who have CFS, which is also known as systemic exertion intolerance disease (SEID) or myalgic encephalomyelitis (ME). ME/CSF is a severely debilitating condition that affects various body systems.
Symptoms of ME/CFS
CFS patients experience extreme fatigue that may worsen with mental or physical activity, but it does not improve with rest.
One out of every four people will be affected to the point of being housebound and/or confined to their bed. This “crashing” may occur when a patient is mentally, physically, or emotionally overwhelmed.
Others experience a feeling of being unwell or feverish with swollen glands or sore throat.
Some people may have pain, lack of mental clarity, and sensitivity to noise and light. Memory and sleep problems occur frequently.
The cause of ME/CFS is unknown. There are many theories, but to date, there is no specific laboratory test that can confirm a diagnosis. Until a viable diagnostic test is found, patients may undergo a variety of tests just to rule out other disorders with these symptoms.
About the Study: DecodeME
The partnership that is leading the study consists of scientists and patients. One of the patients, Andy Devereux-Cooke, is an enthusiastic participant who explains that he and other ME/CFS patients have been waiting for just such a study.
Along with finding the cause and treatment for ME/CFS, Andy said that the patient community hopes to be able to remove the stigma surrounding the disease. It seems that the disorder is generally misunderstood and has not always been taken seriously by some physicians.
Researchers expect to collect about twenty thousand DNA samples from people who have CFS, which is also known as systemic exertion intolerance disease (SEID) or myalgic encephalomyelitis (ME). ME/CSF is a severely debilitating condition that affects various body systems.
The study’s principal investigator explained that the researchers will focus on DNA differences in people with and without the disease. Their goal is to develop diagnostic tests and find the underlying cause of the disease.
The participants’ samples will be compared to non-CFS controls that the UK Biobank will contribute to the study.
The researchers are optimistic because genome-wide studies such as DecodeMe have a successful history of identifying the biological roots of other complex diseases such as Alzheimer’s disease and type 2 diabetes.
