2023-11-09 23:00:00
Around 300 million people all over the world suffer myalgic encephalomyelitis, fibromyalgia and Persistent COVID, diseases in which research advances very slowly and whose patients feel misunderstood by society in many ways.
2.5 percent of the world’s population suffers from fibromyalgia, 0.44 percent suffer from myalgic encephalomyelitis (MS) and according to estimates, 10 percent of those who have suffered COVID-19 develop Persistent COVID (Long Covid). These estimates quantify the global total of those potentially affected in the population equivalent to the United States.
With the goal of “uniting these patients, helping to create community and find a way to help advance research”, Manuel Ruiz Pablosresearcher and patient with ME or chronic fatigue syndrome (CFS), together with his team, are developing DEFENERGY, a application which allows the patient record all your symptoms to monitor the status of your illness, generating reports that prove its evolution to the medical staff.
“These patients are a little forgotten by medicine”
“Normally these patients are a little forgotten by medicine“, says Ruiz Pablos who indicates that with this eHealth app the aim is to “track your symptoms and make it a way that unites patientsfrom their homes with the researchers in any research center where they are or with any health professional who is dedicated to these diseases.” And the app also has the functionality of offering a survey creation service that can be created by any professional or researcher who is dedicated to addressing these pathologies and needs responses from specific groups.
Another benefit pursued with this application, both for patients and health professionals, is the significant savings in consultation times. “Generally, patients with these diseases usually spend a lot of time in each consultation reviewing with their doctor what the symptoms have been, the medication they have taken, etc. With the daily logs of the application it offers a report that in a few pages summarizes the evolution of the patient’s illness”says Ruiz Pablos.
Thanks to the application’s reports, consultation times can be reduced and the analysis of the evolution of the disease can be improved.
The application shows, for example, in the case of fatigue a evolution curve so “at a glance the healthcare professional can see if that curve is positive or negative. With this we can see if the treatment is working that is being carried out,” says the researcher.
“This application tries convert the subjective into objective”says the team, which is also working on synchronizing patient records with data provided by weareables such as bracelets or smartwatches to achieve this objective demanded by health professionals. In the medium and long term and as anonymized objective data is collected, the plan is to integrate Artificial intelligence that makes the app more user friendly and helps get patterns and statistics to facilitate research
“This application searches give credibility and reliability. It makes the patient feel supported when he goes to the consultation, with documentation that analyzes the symptoms he has had,” say the creators of the application.
The data that users register in the application can also transfer to an investigative entity “so that they can see if patients with both myalgic encephalomyelitis, fibromyalgia and persistent COVID have something in common,” says Ruiz. This will allow advance research fastersince DEFENERGY “goes to solve one of the main difficulties that researchers encounter when carrying out their studies, such as finding the right patients with a certain profile.” Although the application provides anonymized information to the research teams, it does allow users to be filtered to find a segment of patients with common characteristics such as age or sex.
“The objective is not only to stop at these three diseases but to get a diagnosis and a solution for them and add new ones”
The application, which is in a beta phase, is being tested by both patients and researchers, although its creators claim that “one of the difficulties What we are finding is get health professionals specialized in these diseases “that can help us verify the output, the report that this application provides with patient data.” In addition, the project has a fundraising campaign open to continue working on improving the application and to include the maximum number of functions possible.
But the ambition of the team that created DEFENERGY goes further. “The objective is not only to stay with these three diseases, but to get a diagnosis and a solution for them and add new diseases for which medicine has not found an explanation, and that research advances to give them a treatment and help them be recognized in the Spanish health system,” say the creators of the app.
“as a patientI can tell you, that always we have been somewhat isolated both medically and socially. We always try to look for people who have our disease so that we feel understood,” says Manuel Ruiz. “If in medical consultations, normally the doctor He doesn’t know much regarding the disease. because it is still being investigated, at home even less and sometimes even your own family members are left with the image that you are lazy or that you don’t want to work; without understanding that these patients are chronic viral patients to whom the disease prevents you from doing life projects that you might do before”.
The application aims to create a kind of patient community so they can find people related to your illness“being a forum where you can find people who areunderstand your situation and they can help face problems or solve the doubts they have,” concludes Ruiz.
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