Chances are that you’ve heard of Chronic Fatigue Syndrome (CFS). But for a long while it wasn’t seen as a condition in its own right. It is a debilitating disorder characterised by excessive tiredness and pain, with diagnosis based only on symptoms. However, this may now be about to change.
Chronic fatigue syndrome affects 17 million people worldwide and 250,000 in the UK alone. But this term was only used widely from the late 1980s, as most societies took a long time to accept it as a real syndrome. Also called myalgic encephalomyelitis, it usually presents with flu-like symptoms and chronic pain, along with difficulty walking, exercising and sleeping. Extreme tiredness is often seen as the defining characteristic of CFS. This exhaustion is usually what patients describe as one of the most difficult parts of the illness, as it remains even after sleep and is different to the everyday fatigue that most people experience. As with many disorders, symptoms are unique to each patient and can vary in severity.
I talked to a close friend about her experience with CFS, and how she was treated after her diagnosis. There are some days when she can walk, socialise and do most of the things that normal young adults do without too much pain. However, there are other days when she is bed-ridden, suffering from severe pain and insomnia without hope of any meaningful treatment. For patients like her, living with chronic fatigue syndrome is a difficult and unpredictable journey. Even worse, there have been times when she has had her illness and walking stick scrutinised; often because she ‘seems fine’. This makes accessing disability facilities a daily struggle.
We are still not sure what exactly causes the syndrome, but it has been linked to a number of triggers such as viral and bacterial infections, hormonal changes or emotional triggers including stress and trauma. However, many of these are just correlations; mental health problems are now considered to be both a cause and a consequence of this condition. CFS is also more common in some families, which suggests that there might even be a genetic link. Genetic predisposition to CFS is thought to be due to genes that increase the risk of certain infections, such as glandular fever, that may trigger the onset of CFS. Failure to fully recover from the infection is often seen as where the condition begins, and the continuing flu-like symptoms can be due to the way in which the body responds to the infection. However, these causes are still under investigation.
Despite this, there has been a recent breakthrough in the field – a blood test to detect the disorder has recently been explored, with promising results. A research group led by Dr Ron Davis at Stanford University used a test that detected the ATP (a molecule that stores energy) used in immune cells to withstand the stress caused by a high salt environment. Cells that are healthy should be able to use ATP to adapt to a high salt environment very efficiently. Cells from a group of healthy people and a group of CFS patients were tested for this ability, and cells from these CFS patients adapted to the high salt environment less efficiently than the healthy controls. This suggests that there is a biomarker (a unique change in the body) for CFS, meaning we are closer than ever to diagnosing CFS with a single blood test.
But what does this mean for people living with CFS? Firstly, we should be aware that this test is still in the early stages of experimentation, and it could still be a while before we see its widespread use. However, if these results are confirmed to be accurate, the test could provide a definite and reliable diagnosis for people struggling with the disorder. This will help with quick access to treatment and support – possibly the most important factor for someone living with CFS. It would also be particularly helpful as evidence for the condition that may be necessary for work and government support. Increased awareness of CFS via this new diagnostic test may be the catalyst for better support in these places. This blood test could start a significant change for the CFS community.