US TOPx HHS AI & Tech Sprint Update: Visit https://invisibleillness.crowdicity.com/ to register & vote for Team Healthful & $200k to support our work

[Healthful_Manny]

I watched for a bit then closed my eyes and listened.

For me, as someone with severe ME/CFS, the video is unwatchable because of all the rapid movement and the flicker of the number counters. The audio is barely listenable because of the rapid tinkly music dominating the voice throughout.

I'm not clear whether your target audience for the video is sick people or funders. If it's aimed at patients, can I suggest you do an audio version, or video with a few simple still screens, and no music.

Can you write a simple outline of who you are, what information you are collecting from patients, and what you intend to do with that information?

Thank you so much, Trish. We apologize as the video was intended for the organizers of the HHS Sprint and we should have considered that it is not fit for sharing in this forum for individuals living with severe ME/CFS. Please accept our sincerest apologies.

We have taken your advice to heart and we will work towards developing materials that are more appropriate for individuals living with invisible illness like ME/CFS. Per your great suggestion, please find a simple, plain language (text only) summary of who we are, what we have built (with great feedback from this forum), and how we are planning to use these tools to help support greater investment into research for Long COVID, ME/CFS, Lyme Disease treatments and eventual cures.

We will post updated patient-friendly material as we develop them here to this forum. As someone who has lived as Spoonie at roughly a 30% existence for nearly 40 years, I personally deeply appreciate the gift of energy you have shared to provide your thoughtful questions and feedback. We can reply here at any time if you have any additional questions we can help with.

With sincere gratitude,

Manny & Team Healthful

 

[Healthful_Manny]

I echo what Trish says. I’m not severely affected but this web content is too much for me. We need a clear plain English summary. @Healthful_Manny

Thank you so much, Nellie. In hindsight, posting the video was a mistake. Please find the plain language summary attached, and we apologize for any undue strain we may have caused.

Sincerely,

Manny & Team Healthful