Myalgic Encephalitis (ME) sufferers were previously often described as “somatising”, that is, experiencing real, physical symptoms which had a psychological cause. This annoyed sufferers, who thought they were being told that their illness was “all in the mind”, that is, imaginary.
Many more doctors now accept that Chronic Fatigue Syndrome (CFS) does exist. However, there is disagreement about how to treat ME/CFS.
Fatigue, poor sleep and inflammation
A 2016 paper in the Journal of NeuroImmunology 9 linked poor sleep quality to high levels of inflammatory markers in sufferers of CFS and ME. As the sufferers’ sleep quality declined, so they suffered more from CFS/ME symptoms. The researchers, from universities in Miami and Boston, highlighted the need for further studies into the link between ME symptoms, sleep quality and inflammation.
Current NHS treatment for the estimated 500,000 sufferers, is to change their behaviour through sessions with a therapist, and to get them to do Graded Exercise Therapy (GET). This is a treatment which aims to overcome fatigue by gradually increasing activity levels.
However, a row has broken out over whether the original studies that showed patients getting a 60% improvement from this regime were accurate in their reporting of results. ME charities and patients are claiming that the treatments are far less effective than this.
Heated remarks on both sides
The row has resulted in extremely intemperate language on both sides. The Journal of Health Psychology criticised the current NHS treatment – this prompted three resignations from its editorial board. In an astonishing leak, an email has been published in which one of the leavers was called a “neo-liberal hypocrite”. Meanwhile, ME activists have been compared to violent animal rights pressure groups by a scientist.
Clearly, the debate could do with more factual evidence, such as what could be produced by high quality paid research studies, by organisations such as http://www.trials4us.co.uk/, using subjects to test out causation theories and treatments.
ME patients tend to get angry at any suggestion that there is a psychological component to their illness. However, in other chronic illnesses which result in fatigue, such as rheumatoid arthritis, the prescription of antidepressants is now part of the standard treatment. The reasoning goes that having a long term illness causes depression, which needs to be relieved along with the physical joint symptoms.