Myalgic encephalomyelitis: “It doesn’t mean being just tired — it means being ill.”

Myalgic encephalomyelitis/chronic fatigue syndrome is a systemic neuroimmune disease, also known as chronic fatigue syndrome (CFS), and is often invisible to others despite being relatively common. It is estimated that more than 50 million people worldwide are affected, and around 200,000 in Italy (about 75% of whom are women). However, many patients remain undiagnosed for years, highlighting persistent gaps in recognition, diagnosis, and clinical understanding of the condition.¹

“The fundamental thing to understand is that it does not mean being just very tired people: it means being ill people,” explained Giada Da Ros, president of the CFS/ME Associazione Italiana ODV, who has been living with myalgic encephalomyelitis for 36 years.

What are the main symptoms of myalgic encephalomyelitis, and how do they overall impact a person’s daily life?
The most common symptom is severe fatigue, but in order to be associated with Myalgic encephalomyelitis/chronic fatigue syndrome, it must be present for at least six months (three months in children) and, above all, not be explained by the level of activity performed. It is an exhaustion that is completely disproportionate to effort: in the most severe cases, even going to the bathroom can become an enormous obstacle. I remember that some time ago, when I carried groceries up to my first-floor apartment, I needed two hours in bed to recover. And even with rest, the fatigue does not seem to go away. A defining feature, however, is Post-exertional malaise (PEM), which refers to a worsening of all symptoms after exertion, and sometimes the appearance of new ones. There are also sleep disturbances, difficulty remaining seated or standing, cognitive issues such as “brain fog” (difficulty concentrating and processing information), pain, and flu-like symptoms. There are also very specific and personal symptoms: in my case, for example, I develop hives, and there is nothing I can do except rest. These are warning signs, minor symptoms that are not constant but indicate a possible and imminent crash. In addition, there are both milder and more severe cases: some people are unable to feed themselves, move from one room to another, and must constantly remain in the dark to avoid suffering. In these cases, there is nothing that can be done except rest, and this obviously has a profound impact on daily life: it is an invisible disability, but often other people do not realize it.²

How did your journey toward diagnosis unfold?
I was quite lucky because I received a diagnosis relatively early, whereas for many other people the process takes much longer. One day I happened to read an article in a newspaper about the condition and immediately recognized myself in the description. In addition, at the time, the only specialist in Italy was working in Aviano, in the province of Pordenone, where I live, so he was also geographically close to me. When I became ill, I was at the beginning of my second year of university: I was no longer able to attend lectures or wait for my turn during exams. For me, the first 12 years of Myalgic encephalomyelitis/chronic fatigue syndrome were extremely severe; I never experienced even a single moment of relief from rest. Today, I have been living with it for 36 years, and at present my recovery times have shortened. In general, for some people it feels like being on a constant roller coaster in terms of functioning, because they improve for a period and then experience a relapse. In addition, patients are often not believed because even medical professionals may not be very familiar with the condition, as ME/CFS is mainly studied within neurology specialties. As a result, patients are sometimes told that they have psychological issues to resolve, or that the problem is "all in their head".³

So the impact is also psychological and emotional…
Absolutely. Just think about the conditions faced by the most severely affected people who are not autonomous, or about potential situations of workplace bullying because they are no longer able to work or study. There are many cases of patients who resort to assisted suicide because they can no longer cope with the severity of symptoms and the lack of support from society and institutions. There have been cases in Sardinia and in England where patients were minors and custody was taken away from their parents because they missed many school days. Families had to go to court to demonstrate that when their children did not attend school, it was because they were physically unable to. In general, diagnosis in minors is more difficult because they do not yet have the experience to understand what is “normal” or not for a child. Moreover, they are not able to explain their symptoms in detail as an adult might.

1. The data are taken from the website of the CFS/ME Associazione Italiana odv. ↩︎
2. To better understand how Myalgic encephalomyelitis/chronic fatigue syndrome impacts a person’s daily life, we recommend watching the TED Talk by Penelope Mirotti, Cosa vuol dire vivere con la Sindrome da Fatica Cronica. ↩︎
3. For further insight, we recommend watching the TED Talk by Jennifer Brea, What happens when you have a disease doctors can't diagnose. ↩︎