Juranova, Iveta
Poslední změna: 12.05. 2020

ME / CFS as a long-term quarantine

ME / CFS (chronic fatigue syndrome) 

May 12 is the international day of ME / CFS, so let's remind ourselves of this diagnosis, which is often not given too much attention or is misinterpreted and mistreated due to the lack of relevant information. Given the current situation with COVID 19, according to studies and preliminary case reports, an increase in cases can be expected, so the topic is very relevant.
The current nationwide quarantine has brought many great changes in everyday life, minimizing contact, shopping at longer intervals and other restrictions that we were not used to, so we sometimes have a harder time dealing with them and naturally long to return to normal state of things. We all know that this is an exceptional situation and we believe that it will not last long. But can we imagine that something like this would take years, or that we should even spend our whole lives like this? However, we can still shop, communicate remotely, and do a lot of common activities that are denied to a patient with ME / CFS, Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, incorrectly called Chronic Fatigue Syndrome. In principle, she cannot visit loved ones or receive visitors permanently, even typing on a computer, making phone calls and using the media worsens the situation, so she is gradually becoming more and more isolated.
Before I could come to terms with the diagnosis, this idea was unacceptable to me, and when it slowly dawned on me that it would most likely be a lifelong reality, it was even depressing. But not the other way around, depression did not bring about this condition.
The issue of trivialization to such an extent that a bedridden person is often not entitled to a disability pension, other support or care, and the psychiatrization of the disease is alarming. There are often confusions with psychiatric diagnosis, although the distinction is not so difficult (see link to the lecture below). Unlike the mentioned depression, patients with ME / CFS do not lose their will, motivation and interest in activity, but any burden worsens the symptoms, activation is not appropriate, on the contrary, the most crucial is a consistent rest regime. Comorbidity with a psychiatric diagnosis may not preclude ME / CFS.
PEM, a typical worsening of symptoms after exercise (literally nausea after exercise), is the main diagnostic criterion, not fatigue. In the context of ME / CFS, it is more of exhaustion, in the most extreme cases completely bed-tight. However, fatigue may not be present in remission, so its absence does not indicate that the patient does not suffer from the disease, which also applies to other diagnostic criteria, such as orthostatic intolerance (measurable by tilt test - non-confirmation may not be evidence of disease) and cognitive impairment. , reduced performance should always be present. For further criteria and symptoms, see the link at the end of the text again.
PEM is measurable by the CPET test, in which there is a noticeable decrease in metabolic parameters during tanning, which tends to increase in healthy ones, but testing, depending on the patient's condition, is not appropriate to perform with greater severity, as it causes deterioration. Likewise, the risk of treatment exhaustion should not outweigh its potential benefits.
CFS is not an acronym for Fatigue Syndrome, but they are two different diagnoses, as the WHO makes clear by removing the diagnosis of Fatigue Syndrome from ICD-11 now, while leaving CFS under the neurology chapter. If, among others, neurological symptoms occur, it leads to CFS, while for fatigue syndrome there is no clear definition and can be part of many different diseases, the word chronic is important for the distinction, but as already mentioned, the term is misleading and official change of name to a disease of systemic intolerance of exertion, which here corresponds better. Based on a report from the Institute of Medicine, which is a metastasis of all more than 9,000 studies available, the CDC website was also re-evaluated and recommendations were made to diagnose the disease in a new way.
We do not know the cause, the onset is most often sudden, but it can also be creeping and gradual. So far, there is no causal curative treatment, it is only possible to suppress symptoms, not provoke deterioration and encourage the immune system to deal with the disease itself. Recommended therapies, based on psychotherapies for the treatment of fatigue, are now being revised for the increasing number of cases in which they have left patients in a permanently deteriorating condition and have been withdrawn from CDC recommendations. (Of course, the positive effect of psychotherapy cannot be denied, but it is reliant on consideration of what the patient's condition will allow, whether to appear or communicate remotely or at bedside in extreme nausea and such a decrease in energy that even a few minutes of concentration can worsen, hardly a suitable time is sought at all and cannot be planned, which I can confirm with past and repeated experience.) Improvement usually occurs with radical reduction of activities, when the patient no longer works normally and is excluded from normal life, nevertheless the effort to respect restrictions is in place, sometimes the state does not allow anything else (We distinguish the degrees of severity from mild to very severe, when the patient in bed cannot do without assistance).
As with any other disease, early diagnosis and treatment are important, exclusion of other diagnoses, do not stop the treatment other diagnoses due to ME/CFS, focus on comprehensive view in context, interdisciplinary cooperation.
In February, we gave a lecture on ME / CFS at the Faculty. Presentations and more extensive texts can be found at www.unavenyjekazdy.cz/prednaska, there are also links to important sources, foreign studies. If you are interested, we are willing to answer questions at the email addresses listed under each post. We are also preparing the publication of other comprehensive material, which you will find out about via the faculty's website or Facebook. Interested parties from this year's graduates and others who do not regularly follow the site can write to us and we will inform them later.

Nice tireless days!
Bc. Anezka Soubova, Ing. Lenka Goldšmídová