A new study into chronic fatigue syndrome is set to be launched in the UK.
It will be the world’s largest genetic study into the condition, and has received £3.2m of funding from the Medical Research Council and National Institute for Health Research.
The aim of the research is to learn more about the illness, which despite its long-term, debilitating symptom, is relatively unknown.
By collecting DNA samples from 20,000 people with CFS, it is hoped diagnostic tests and targeted treatments can be developed.
Andy Devereux-Cooke, a patient involved in the study, said: “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 totally unwarranted stigma and lack of understanding that so many patients with ME/CFS face on a daily basis.”
It's thought that the condition affects around a quarter of a million people in the UK, and costs the economy billions.
There is currently no effective treatment.
What is Chronic Fatigue Syndrome?
Chronic fatigue syndrome (CFS) is a long-term illness,also known as ME, which stands for myalgic encephalomyelitis.
It includes a wide range of symptoms, though the most common symptom is extreme tiredness.
CFS/ME can affect anyone - including children - though it's more common in women, and tends to develop between the mid-20s and mid-40s.
What are the symptoms of Chronic Fatigue Syndrome?
Those with Chronic Fatigue Syndrome (CFS) have erratic sleeping patterns, experience nausea and headaches, and are persistently left crippled with exhaustion.
- sleep problems
- muscle or joint pain
- a sore throat or sore glands that are not swollen
- problems thinking, remembering or concentrating
- flu-like symptoms
- feeling dizzy or sick
- fast or irregular heartbeats (heart palpitations)
People with CFS/ME experience severe, persistent fatigue – very different from ordinary tiredness – associated with post-exertional malaise, the body and brain’s inability to recover after expending even small amounts of energy.
This leads to a flare-up in symptoms including chronic pain and difficulties with concentration, thinking and memory – known as brain fog – and problems with the nervous and digestive system.
One in four people with CFS/ME are so severely affected that they remain bed or house-bound.
How is it treated?
No treatment has been proven effective in all cases, but CFS may be treated with the following:
- cognitive behavioural therapy (CBT)
- a structured exercise programme called graded exercise therapy (GET)
- medicine to control pain, nausea and sleeping problems
Though some people do not make a full recovery from the condition, many get better over time.
There can also be periods when symptoms get better or worse.