“We do not understand why something that the WHO had already defined has to be redefined.” This is how critical the Long Covid patient groups are with the new definition of Persistent Covid or Long Covid that have just been agreed upon by the Ministries of Health and Science and Innovation together with the Carlos III Health Institute presented by Minister Carolina Darias.
According to the Long Covid patient groups, the new definition that establishes that persistent Covid is a “set of multi-organ symptoms not attributable to other causes that last after the acute phase of the infection”, means “not taking the bull by the horns and saying that this is a disease”.
Dice Isabelle Delgadoof Long Acting Covidthat the study “should say what the scientific evidence already says about persistent Covid.”
And then there is the fact of narrowing down the definition. «It is about limiting and, then, who enters inside and who stays outside? Because of course, there are many people with persistent Covid who with this definition can be left out and that means that there is a huge number of people who are trembling ».
Delgado refers to the fact that the document on the diagnosis points out. It is said that in order to establish a possible diagnosis it is necessary to have, in addition to the aforementioned definition, a previous diagnosis of acute infection, either with laboratory tests or by inclusion in the clinical history; rule out other health problems to which the symptoms may be linked; define possible previous health problems of the affected people, and differentiate the damage and sequelae produced by the acute infection.
But, Delgado explains, many people “don’t have no confirmatory test so they can be left out. And specifically I am not saying it, saying it for me, because I do have confirmed proof.
This Long Covid patient underlines that patients with persistent Covid «we are not very very satisfied with this definitionbecause it does not specify anything, because does not go to the root, which is to say that Long Covid is the same as Covid-19; simply putting the long is that it lasts longer or is persistent, or what is the same, that the symptoms persist ».
It is the same as Covid-19, chronically, that some have it for 5 days and others have it for two and a half years
Patients with persistent Covid trust that this issue will be clarified. It is clear, Delgado points out, “that it must be said that this is a disease and that it is the same as Covid-19, but chronically, that some have it for 5 days and others have it for two and a half years.”
Delgado is aware that all this is very complicated for those who do not live it every day, «but it is not possible to speak of a syndrome but of disease. The syndrome, he affirms, is indeed a set of symptoms and signs that have no etiology, whose origin is unknown. We know what the origin is, pure and simple. It is not a post viral syndrome».
Patients also criticize the study and its methodology because, says Delgado, already at the time “all the patient associations stated that we did not agree very much because the questionnaire was not rigorous.”
Thus, the Platform of Collectives and Associations of Patients Long Covid ACTSthe Long Covid Aragón Association, the Madrid Persistent Covid 19 Collective, together with the Spanish Society of General and Family Physicians (SEMG), the SATSE Nursing Union and the State Confederation of Medical Unions joined together to bring the Ombudsman “The lack of scientific rigor of the study CIBERPOSTCOVID which also leaves patients out.”
“As patients, it so happens that I was one of the 10 who participated in that questionnaire, we said that it was not very rigorous,” says Delgado. I remember that there was a meeting with Christopher Belda (Director of the Carlos III Health Institute), to tell him that we were not very in agreement with a questionnaire that took the representation of patients from only 6% ».
In addition, they denounced at the time that the questionnaire could be answered by people without any experience or relationship with the disease. “We wonder how define a new disease without having wanted to listen to the patients who suffer from it day by day, ”says this Covid patient.