She can't even hold a phone conversation without feeling exhausted. "I'm lying on the sofa, talking to you, and it's still really tiring," admits Beatriz García-Quijada. This civil servant from Madrid suffers from Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS), a disorder of the nervous system which means that even simple, everyday physical or mental activities are exhausting.
Beatriz realised that something wasn't right in 2019. "I had just come out of a depression and I thought the tiredness was because of that, but it got worse. I used to go to work feeling worn out and dizzy, it was an effort to even get out of bed in the morning... you feel like you have run out of batteries and it doesn't get any better even if you rest. That's why we have to carefully measure what we do, because the tiredness comes 'a posteriori', so if you overdo it then you suffer the consequences," she says.
And what does overdoing it mean for people like Beatriz? Even something as simple as eating breakfast or having a shower leaves them fatigued.
The causes of these symptoms are not known. "We think there may be a process of neuro-inflammation that might lie behind it. What seems more likely, though, is that some infections, especially viral ones, have the ability to trigger the illness in someone who is genetically predisposed to suffering from it," explains Javier Rivera, the spokesman of the Spanish Rheumatology Society.
The symptoms and their severity vary from one person to another. Beatriz, for example, has a III to IV grade of severity at cognitive level and III/IV to IV in the effort test.
"I'm a philologist, I studied to be a civil servant, and now just opening an email wears me out. I suffer from what they call mental fog - a symptom which involves forgetfulness, confusion, loss of concentration and perception of the outside world. When it happens, I can't even put a simple sentence together," says Beatriz. "Before, I was very active. I used to do Nordic walking and every Wednesday I would walk between ten and 12 kilometres. Now it's as much as I can do to walk round the block. And on some days, I can't even leave the house, or get out of bed".
Nor can Beatriz travel, clean the house, go shopping, throw out the rubbish, drive or read, among many other things. In fact, digesting food is also difficult, because Chronic Fatigue Syndrome also affects different vital organs. In her case, the intestine and liver. For this reason, she is on a very strict diet and never eats in the evening.
"The tiredness (which gets worse as the day goes on) takes away my appetite and I hardly ever cook because it takes so much effort," she says.
Despite all that, in her opinion the worst part is the general lack of knowledge and understanding about the illness in society.
"For months I went from doctor to doctor. Some told me it was an autoimmune hepatitis, others that it was psychosomatic. It wasn't until I went to the association of people suffering from Chronic Fatigue Syndrome and Multiple Chemical Sensitivity in Madrid that I was properly diagnosed," she says.
The reason is that "there are no diagnostic tests that confirm the illness. That is done through the person's medical history and the symptoms they tell us they have, which are similar to a lot of other illnesses as well," explains Dr Rivera. That is one of the reasons that Beatriz can't get a permanent disability benefit - and she works for the National Social Security Institute (INSS), which grants them. So for years she has been signed off sick, time and time again.
"To obtain that benefit, you need reports from the health service which take ages to acquire, because the INSS doesn't accept reports from private doctors, even if they are specialists. Also, as we look normal, people think we are making up what we say is happening to us, because they can't see that we are actually wrecked inside," says Beatriz.
The pandemic has changed some things. The number of cases has shot up recently as a result of long Covid, something that ten per cent of the population suffers from, and this is helping to make the condition more visible.
In 2020 the EU approved a resolution for some initiatives to support and raise awareness of this condition among the public, including producing reports on its prevalence and setting up training and awareness programmes for medical staff.
In Spain the regions are responsible for implementing them.
"So far, we have held meetings with representatives from Castilla La Mancha, Navarra, Asturias and Murcia, and we are planning more in the Basque Country and Valencia," says María López Matallana, the vice-president of CONFESQ, the Spanish Coalition of Entities that represents the patients. "The idea is to make the illness better known, to achieve faster diagnosis and improve the quality of life of the patients," she explains.
Beatriz says there is also some stigma around the illness. "People think that when you decline to do something because you are so tired, you are making excuses, and so you end up losing social relationships. The association has saved my life, because I have met people in the same situation and they understand me. We support and help each other. I'm 58 years old, so I'm getting on, but I know some women who can't look after their children properly because of the fatigue, and others who have had to give up their studies, lost their job or are at risk of social exclusion," she says.
In terms of treatment, there is none. "They do what they can, depending on each individual's case. Medication might help certain symptoms but you have to be very careful about taking it because a lot of people are hypersensitive to drugs. It's also crucial to stay as fit as you can, somehow, and psychological support is essential," she says. Beatriz, for example, has psychological help and also takes sleeping tablets to help her get some rest.