Agree with Bach Coline . Should be very interesting to hear about some if your patients. Status when you started treatment and how they are doing now. And of course what kind of treatment they got.
You thank us — but I would like to start by thanking you. Your work has been nothing short of groundbreaking. Not just for its scientific and clinical value, but for the hope and clarity it brings to families like mine. Your dedication has helped many of us feel less alone in a healthcare world that often doesn’t know what to do with our children.
I’ve been thinking about your question — what matters most right now — and honestly, it’s not easy to choose. But I’ll share a few thoughts that may add to the beautiful mission of buonsenso&thekids.
The role of genetics in Long Covid
I know many children with Long Covid whose parent(s) also experience symptoms — sometimes mild, sometimes more severe, and sometimes masked (as in my own case, likely due to vaccination). I wonder: could there be a genetic or epigenetic factor involved? And if so, might this affect treatment decisions — including vaccination? You've written with care and nuance about the risks of vaccinating children with Long Covid, but I wonder whether those risks might be influenced by family medical history, or even by how the parent reacted to the vaccine. Could that make it safer in some cases?
Preparing for the next wave
With another wave expected this autumn, how can parents prepare? You've mentioned the importance of early treatment — but how can families secure access to this treatment in time? How can we anticipate and act proactively, especially in countries where doctors don’t yet recognize or understand Long Covid in children?
Thank you again, not just for what you do, but for how you do it — with empathy and courage for every child and family.
- Evidence of treatments working (your case studies or others). How children can actually access treatment. - How to push for more funded trials. AND ensure treatments are trialled for children. - How to raise awareness (amongst doctors and educators on how to care for children with LC and ME (particularly severe cases).
The mathematics behind this paper is not easy for a lay person to understand, but it seems to prove the reconditioning hypothesis is incorrect, and points to issues in the liver, which is interesting as many people with ME report fatty liver disease and high cholesterol…
This includes the group behind DecodeME, so they are a serious study team.
Would love an even deeper dive and more hand held approach for this one - Practical tips for managing energy and pacing in kids and teens (though done in part in some videos already). I also love those suggestions below that speak to recovery stories or positive treatment in your patients. Thank you for everything you continue to do for this community.
Main interest: Neuropshychiatric and cognitive sequelae in Long Covid, and status of research in understanding the rooth cause for this and possible treatments to remove the cause
Maybe stories from some of your patients who recovered?
And continue updates on research and treatments for ME/CFS and Long Covid, of course 😉
Agree with Bach Coline . Should be very interesting to hear about some if your patients. Status when you started treatment and how they are doing now. And of course what kind of treatment they got.
Would be a great help for many, especially managing the „crash“, sleep - and pain… thank you so much for your work & support! 🙏
Tools for improving quality of life at home
Thank you for the HOPE in your greetings, we all need it all
main interest is Updates on research and treatments for ME/CFS and Long Covid (though mostly done every sunday
im mostly interested in the specifics treatment plans/options and dosages
Dear Danilo,
You thank us — but I would like to start by thanking you. Your work has been nothing short of groundbreaking. Not just for its scientific and clinical value, but for the hope and clarity it brings to families like mine. Your dedication has helped many of us feel less alone in a healthcare world that often doesn’t know what to do with our children.
I’ve been thinking about your question — what matters most right now — and honestly, it’s not easy to choose. But I’ll share a few thoughts that may add to the beautiful mission of buonsenso&thekids.
The role of genetics in Long Covid
I know many children with Long Covid whose parent(s) also experience symptoms — sometimes mild, sometimes more severe, and sometimes masked (as in my own case, likely due to vaccination). I wonder: could there be a genetic or epigenetic factor involved? And if so, might this affect treatment decisions — including vaccination? You've written with care and nuance about the risks of vaccinating children with Long Covid, but I wonder whether those risks might be influenced by family medical history, or even by how the parent reacted to the vaccine. Could that make it safer in some cases?
Preparing for the next wave
With another wave expected this autumn, how can parents prepare? You've mentioned the importance of early treatment — but how can families secure access to this treatment in time? How can we anticipate and act proactively, especially in countries where doctors don’t yet recognize or understand Long Covid in children?
Thank you again, not just for what you do, but for how you do it — with empathy and courage for every child and family.
- Evidence of treatments working (your case studies or others). How children can actually access treatment. - How to push for more funded trials. AND ensure treatments are trialled for children. - How to raise awareness (amongst doctors and educators on how to care for children with LC and ME (particularly severe cases).
How can memory and concentration problems in children be managed? Is there a role for rilatin in getting them back to school?
What approach should a neuropediatrician take when dealing with a longCOVID child with cognitive problems and PEM?
Thanks for what you do.
There are two things I would like to hear more about:
1) how we can help family and friends of people with these diseases understand them better, and be more sympathetic.
2) ongoing research: this last week there was an interesting piece published by a group in Edinburgh, UK: https://www.embopress.org/doi/full/10.1038/s44321-025-00258-8
The mathematics behind this paper is not easy for a lay person to understand, but it seems to prove the reconditioning hypothesis is incorrect, and points to issues in the liver, which is interesting as many people with ME report fatty liver disease and high cholesterol…
This includes the group behind DecodeME, so they are a serious study team.
Would love an even deeper dive and more hand held approach for this one - Practical tips for managing energy and pacing in kids and teens (though done in part in some videos already). I also love those suggestions below that speak to recovery stories or positive treatment in your patients. Thank you for everything you continue to do for this community.
Main interest: Neuropshychiatric and cognitive sequelae in Long Covid, and status of research in understanding the rooth cause for this and possible treatments to remove the cause