ME (myalgic encephalomyelitis) is a serious, chronic illness affecting multiple bodily systems, often triggered by a viral infection. Around 250,000 people in the UK and millions worldwide are thought to be affected. ME has been recognised by the World Health Organisation as a neurological condition since 1969, with thousands of research studies demonstrating abnormalities in the nervous, immune, circulatory and musculoskeletal systems, as well as in the cellular mitochondria. (A detailed summary of historic research findings can be found here. Summaries of more recent research can be found here, here and here.)
Symptoms of ME are extensive and include an overwhelming flu-like feeling, pain in any part of the body (in the most severe cases unrelieved even by morphine), muscle weakness, paralysis and cognitive dysfunction. A classic, defining feature of ME is deterioration following any activity beyond the person’s limit, known as post-exertional malaise (PEM). Acute sensitivity to sensory stimulation – light, sound, touch, taste, smell and movement – is another common feature, and can be among the greatest challenges to daily existence.
Patients more mildly affected are able to maintain aspects of normal living, but at its most severe, ME has been compared to the final stages of AIDS. (Among others, Dr. Nancy Klimas, researcher and clinician at the University of Miami, said in 2007 that ME patients “experience a level of disability equal to that of patients with late-stage AIDS and patients undergoing chemotherapy.”)
The most severely affected patients are completely bedridden and often require tube feeding, morphine and oxygen. Sensitivities can be so acute that even the presence of another person in the room can cause a major worsening of symptoms. A study in 2015 comparing 21 major illnesses, including heart disease and cancer, found that ME sufferers had the lowest quality of life by a significant degree. There is no cure and no universally effective treatment. In some cases ME is fatal: the true death rate remains unknown, as death is often attributed to other causes.
Since the 1980s, ME has also been known as chronic fatigue syndrome (CFS), but this name is widely rejected by patient groups due to its trivialising nature. The diagnostic criteria for CFS is also much broader, meaning that neurological ME becomes lost among more generalised fatiguing conditions. This has had negative implications for medical research, as many studies purporting to investigate ME have in fact included a spectrum of other conditions.
Despite the WHO classification of ME as a neurological illness, and the abundance of research evidence demonstrating biological abnormalities, for decades a prominent group of psychiatrists in the UK have sought to reframe the illness as a psychological disorder requiring behavioural therapies. This has influenced healthcare policy around the world. The consequences for those with ME have been devastating, with many left irreparably worse through being forced into damaging treatments. Some families are subjected to care proceedings when professionals blame the parents for their child’s illness.
Many within the medical profession remain ignorant as to the severity of ME; others are openly hostile and dismissive. Even those who are sympathetic are often unable to respond to the complex needs of the most severely affected. The result is that some of the most seriously ill patients in society are left without anything resembling appropriate medical care.
In short, the illness itself forms only part of the burden experienced by those with ME: a major additional strain is coping with lack of awareness from professionals, the media and society in general. Even in the absence of a cure or effective treatment, the lives of those with ME would be transformed by more widespread understanding as to the true nature of the illness.
I have written in more detail about these issues, as well as the notorious PACE trial, here.
A Life Hidden 