What name is given to the disease?
Among the population, the most used name is ‘Chronic Fatigue Syndrome’.
However, lately we are seeing how ‘Myalgic Encephalomielitis’ is gaining more popularity among doctors and patients, because they understand
that ‘Chronic Fatigue Syndrome’ can be misinterpreted.
CFS refers only to (chronic fatigue) reducing the whole disease to just that one symptom.
The least used terminology for this disease is ‘Systemic exertion intolerance disease’.
Estimated numbers of patients
Nowadays, the estimation is 0,2% of the general population [approx. 91,000 people] However, unfortunately, there are no studies that confirm that number.
In addition to that, it is believed that it is been underdiagnosed due to the lack of knowledge among healthcare professionals.
Status of recognition
The reality is that ME/CFS is little recognized.
In general, it is more known in public health, but that occurs occasionally.
In private healthcare there are few specialists. This happens because of healthcare professionals’ lack of knowledge of the disease.
There is also little training at universities as well as training for practising doctors.
Specialism used to treat ME
There is no special treatment for ME, but there is treatment for some of its symptoms.
Specialists agree that the treatment of these symptoms must be individualized because what works for some patients may not work for everyone.
Some specialists have discovered that food supplements may improve patients’ quality of life.
Average time before diagnosis
The average time for diagnosis in Spain is from 3 to 10 years approximately.
Due to the lack of knowledge in the first place.
Later, the process is exhausting as tests are carried out to rule out other pathologies and that implies a large amount of waiting time.
Guidelines used
Specialists in private healthcare who know more about ME diagnose it according to the 1994 Fukuda criteria and the 2011 international
consensus criteria.
Whereas in public health, they are more generally unaware of ME, so they tend to focus on the medical history.
They also ask about one's family’s medical history, one'sr current condition, one's symptoms and how long has one suffered from them
as well as how they affect one's life.
Unfortunately, sometimes they also consider the existence of a depression problem that generates the symptoms and not because of suffering from
the disease. Once you have been diagnosed by public health professionals, the ones who monitor you are not specialists but primary care doctors.
Disability status of patients
Most of ME patients find it almost impossible to work so their last resort is to request for the incapacity for work.
Disabilities must be reported in court to have official recognition and this is not always achieved.
However, some progress has been made in the last years.
The very small percentage of patients who can continue with their working life have serious difficulties to do so.
And, of course, work must be adapted for them. Their bosses and colleagues do play an understanding role.
Nevertheless, continuing with their working life entails such deterioration that they end up requesting incapacity for work.
Other Observations
Spain needs more specialists in ME in public healthcare facilities.
Also, primary care doctors need more training as at the end they are the ones with more contact with the patients.
The ideal would be to have an interdisciplinary unit in which they can properly diagnose and an annual checking.
April 2021