It is difficult to know where to start when discussing Chronic fatigue syndrome (CFS). It is a very complex condition and, moreover, one which for the last 50 years orthodox medicine has often dismissed or considered to be in the patient’s head.
In 2002 a Department of Health working group concluded that CFS (also known as ME) would become one of the most prevalent diseases of the 21st century with 0.2-0.4% of the UK population affected. This prediction has proved to be spot on with current NICE figures showing that approximately 1 in 250 people in the UK are affected by the condition.
Studies suggest that people with CFS have disability rates similar to MS, Rheumatoid arthritis, Lupus, heart disease and other serious illnesses. CFS is characterised by severe, debilitating fatigue that is exacerbated by exercise but does not improve with rest. This condition can lead to substantial impairment and make every day activities difficult. There is currently no universally accepted method of diagnosis, so other conditions with a similar presentation of symptoms must be ruled out first. This means that diagnosis is often a long process.
The Cause
The literature suggests a range of possible causes including hormonal disturbances, immune system dysfunction, infectious and viral agents and nervous system abnormalities may play a role in the pathophysiology of the disease. Early research associated infectious agents such as glandular fever (Epstein Barr virus) with the condition. This indicates that CFS may be some form of post viral syndrome such as we are currently seeing with long COVID.
It has been suggested that viral infections can alter immune response which, in turn, can chronically activate the immune system and lead to many of the symptoms. The research within this field, however, is inconsistent with no evidence of a single infection causing CFS. In addition, many CFS patients show no sign of previous infection which indicates that infectious agents may be relevant to only some sufferers.
The Science
In 2011 and 2013, a British team conducting a large clinical study (the PACE trial) reported that exercise and cognitive behavioural therapy relieved the symptoms of CFS for many people. US and UK health authorities made recommendations based on the findings of this trial but from around 2015, scientists and patient advocates began publicly criticising the trial citing flaws in its design. This led to the guidance being revised and a return to square one!
The biggest problem in moving forward with this condition is the lack of funding for research. In the United States, for example, research for HIV/Aids receives 200 times more funding than research for CFS despite the fact that each of the conditions affect a similar number of patients.
Treatment requires an integrated approach so practitioners have a framework of understanding and appreciation for ALL factors, which may be affecting a patient’s health. At Walnut Grove we have a range of practitioners from the fields of osteopathy, physiotherapy, acupuncture, psychotherapy and nutrition who work together to treat the patient and not the condition. Research for any approach, complementary or more mainstream medicine, is moderate to weak which tends to reflect the complexity and very individual nature of the condition.
Helpful resources
If pain is your major issue the following guidebook may help in association with working with a practitioner.
If a long read is too much for you then here are two short videos that suggest a way forward. Please just be aware that patients with CFS need to build up exercise very, very slowly built up as it can increase fatigue.
