"No te lo inventas", the campaign to raise awareness and funds for research on Long COVID

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25/05/2021

"No te lo inventas", the campaign to raise awareness and funds for research on Long COVID

"No te lo inventas" is not just the name of a crowdfunding campaign: it is the answer of the Fight AIDS and Infectious Diseases Foundation, the IrsiCaixa AIDS Research Institute and the #YoMeCorono initiative to the thousands of people affected by this still largely unknown syndrome.

The Fight AIDS and Infectious Diseases Foundation (FLS) and the IrsiCaixa AIDS Research Institute are launching the "No te lo inventas" campaign to raise awareness of persistent VIDOC disease and secure funding for research. "No te lo inventas" is not just the name of a campaign: it is the response of the Fight AIDS and Infectious Diseases Foundation, the IrsiCaixa AIDS Research Institute and the #YoMeCorono initiative to the thousands of people affected by this still largely unknown syndrome.

The slogan of the campaign and its website, www.noteloinventas.com, are intended as a gesture of complicity and understanding towards people affected by persistent COVID syndrome, many of whom have had to fight not only against the effects of the disease but also against the lack of understanding and responses from some sectors of the healthcare community. For this reason, to create this initiative we have counted on the essential collaboration of patients, as well as the Collective of People Affected and Persistently Affected by COVID-19.

 

THE PERSISTENT COVID UNIT

The money raised through this initiative will go entirely to the research carried out by the Persistent COVID Unit of the Germans Trias i Pujol Hospital, which has been in operation since June 2020, and is led by Dr. Lourdes Mateu (FLS and Germans Trias) and Dr. Marta Massanella (IrsiCaixa). The Unit is made up of a team of specialists from various medical disciplines such as infectious diseases, cardiology, neurology, psychology, dietetics and nutrition, pulmonology, rehabilitation, radiology and rheumatology.

"From the very beginning, our priority has been to be at the side of those affected and their families, because only from a global medical perspective can we understand the complexity of this syndrome and help patients," explains Dr. Mateu.

"Passing COVID-19 at the beginning of the pandemic was a big change in my life. What seemed to be a mild affectation became a set of symptoms that have been lengthening over time until today," explains Anna Mata, member of the Collective of People Affected and Persistently Affected by COVID-19. Silvia Soler, a patient of the Unit and spokesperson for the same group adds that "for many months no one had an answer to all the symptoms I was experiencing. The Can Ruti Persistent COVID Unit represents a breath of hope". In fact, this Unit has become a model of operation that the Catalan Institute of Health wants to extend to other health areas of Catalonia.

 

KING COHORT STUDY

The clinical data collected from the more than 300 patients currently attending the Unit are being analyzed as part of the Cohort King clinical study, which will provide more information on this disease and help to develop protocols for future action. According to Dr. Massanella, research is key to understanding why the symptoms persist, but first three priority objectives must be achieved: "to categorize the various patient profiles according to their condition, to determine a marker for diagnosing this disease, and to find treatments to improve the quality of life of people with persistent COVID," she says.

On the website www.noteloinventas.com there is all the information about the research areas in which the company is currently working: the study of the effects that COVID-19 can have on the immune system, but also on the vagus nerve or the cardiovascular system, among others.

 

THE SYNDROME

According to the World Health Organization, persistent COVID syndrome affects 10% of people who have passed the acute phase of COVID-19. Even having suffered mild or moderate symptoms, these people have symptoms beyond the usual duration of 2 to 3 weeks. This symptomatology affects mostly women and the average age is in the 40s. Persistent COVID manifests itself differently in each person and its symptoms can be extremely diverse, including fatigue, chills, dizziness, blurred vision, choking or shortness of breath, coughing, muscle and joint odors, tachycardia, anxiety, depression, headache, lack of concentration and memory, alteration or loss of smell or taste, among many others.

 

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