DEFENERGY app for Patients with Myalgic Encephalomyelitis, Fibromyalgia, and Persistent COVID

Sly Saint · Nov 11, 2023

DEFENERGY: Empowering Patients with Myalgic Encephalomyelitis, Fibromyalgia, and Persistent COVID – Join the Community and Track Your Symptoms

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.
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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.
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https://www.archyde.com/defenergy-e...d-join-the-community-and-track-your-symptoms/

@Aroa

EndME · Nov 10, 2023

@Manuel is Manuel Ruiz Pablos.

Trish · Nov 10, 2023

I'm not clear whether this is a national or international project, and if national, which country.

I am very much in favour of such projects if well done, but a bit concerned about duplication of effort with several people developing similar apps, all with different diagnostic, symptom and activity tracking strategies. It gets a bit confusing as a patient deciding which one to try. I hope there is some coordination between developers, leading researchers and leading ME/CFS patient organisations.

rvallee · Nov 10, 2023

Trish said: ↑

I'm not clear whether this is a national or international project, and if national, which country.

I am very much in favour of such projects if well done, but a bit concerned about duplication of effort with several people developing similar apps, all with different diagnostic, symptom and activity tracking strategies. It gets a bit confusing as a patient deciding which one to try. I hope there is some coordination between developers, leading researchers and leading ME/CFS patient organisations.
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Projects like this usually work out when data can be shared across teams and organizations. But health data is never shared, so all we end up with is multiple siloes. I used Visible for a few months, then gave up because, really, what's the point?

We need a revolution in how health data is used, but it's going to have to be far more fundamental, likely driven by AI. Otherwise things just get stuck by human obstacles.

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DEFENERGY app for Patients with Myalgic Encephalomyelitis, Fibromyalgia, and Persistent COVID

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DEFENERGY app for Patients with Myalgic Encephalomyelitis, Fibromyalgia, and Persistent COVID

Sly Saint Senior Member (Voting Rights)

EndME Senior Member (Voting Rights)

Trish Moderator Staff Member

rvallee Senior Member (Voting Rights)

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