Great video and comments. Yes I agree few of our friends really get what its like for our 16 year old daughter to have had LC for the last 3 years. LC does not fit most people's idea of what an illness is. Life experience teaches most people that most illnesses have an acute phase and when the patient is very sick often bed bound then they gradually improve with treatment and return to normal. In LC symptoms fluctuate day to day and some times within each day. For example - our friends visit for a meal - our daughter looks perfectly healthy and is animated talking with everyone and looks normal but when her energy supply turns off or is used up - she has to rest, can barely walk and looks pale like a corpse - all in the space of one hour. Because this is not what people are used to when someone is sick they are confused. The other source of confusion is that medical science hasn't yet pin pointed what causes these severe ups and downs and that confuses our friends. Also people don't like to think that there are diseases that affect children/teens that don't have a cure. Most people ward off anxiety about getting sick with the rationalisation that if they get sick a doctor can fix it (maybe apart from cancer) . Because LC is not atypical illness this can make it hard to explain to the school. The school asks "us: if your daughter is sick how come she was able to come to school yesterday but can't come today? How can she truly be sick if she might be able to come to school tomorrow. " They may doubt that she has a physical disease and say it is "psychological" . I have provided endless medical reports but they keep asking for more. That's why awareness raising is so important. DANILO - you didn't mention PACING - do you believe pacing helps?
thanks a lot Robert, your comment contains all needed info on LC, everyone should be aware of it.
I entirely agree about school, my next video will be exactly on how important is for school and teachers to partner with us and the family (and patients). You will need to send them the link (but also the link of my book).
Yes, pacing is alway pivotal, that is the base for all next steps. Will also do a video on that, but I did already a blog post as well
Just wanted to add, the video would be great so that also friends can understand. Despite me sending them tons of information/links on long COVID/mecfs, they seem not to be able to acknowledge it's an actual 24/7 thing, so coming from a doctor's voice like yours, I'm sure it will strike them and make them understand the disease is real and debilitating, albeit no one talks about it. Thanks Danilo.
Danilo, this is a great video! Could you please record, even a much shorter one, in Italian please? To show my parents, who still don't believe, like many.
I loved this video thank you. I think you struck a great balance between describing the serious impact of long Covid and injecting some optimism and hope for the future. Thank you
Just wanted to share that I appreciate you making videos, but for me and I think many others, text is more accessible as it takes less energy / concentration to process
thank you Svea, I am sorry for that. I’m trying to do some videos and some text as others told me that reading is too difficult. Anyway, for all videos you should find the transcripts, so should be able to read . let me know
Great video and comments. Yes I agree few of our friends really get what its like for our 16 year old daughter to have had LC for the last 3 years. LC does not fit most people's idea of what an illness is. Life experience teaches most people that most illnesses have an acute phase and when the patient is very sick often bed bound then they gradually improve with treatment and return to normal. In LC symptoms fluctuate day to day and some times within each day. For example - our friends visit for a meal - our daughter looks perfectly healthy and is animated talking with everyone and looks normal but when her energy supply turns off or is used up - she has to rest, can barely walk and looks pale like a corpse - all in the space of one hour. Because this is not what people are used to when someone is sick they are confused. The other source of confusion is that medical science hasn't yet pin pointed what causes these severe ups and downs and that confuses our friends. Also people don't like to think that there are diseases that affect children/teens that don't have a cure. Most people ward off anxiety about getting sick with the rationalisation that if they get sick a doctor can fix it (maybe apart from cancer) . Because LC is not atypical illness this can make it hard to explain to the school. The school asks "us: if your daughter is sick how come she was able to come to school yesterday but can't come today? How can she truly be sick if she might be able to come to school tomorrow. " They may doubt that she has a physical disease and say it is "psychological" . I have provided endless medical reports but they keep asking for more. That's why awareness raising is so important. DANILO - you didn't mention PACING - do you believe pacing helps?
thanks a lot Robert, your comment contains all needed info on LC, everyone should be aware of it.
I entirely agree about school, my next video will be exactly on how important is for school and teachers to partner with us and the family (and patients). You will need to send them the link (but also the link of my book).
Yes, pacing is alway pivotal, that is the base for all next steps. Will also do a video on that, but I did already a blog post as well
Just wanted to add, the video would be great so that also friends can understand. Despite me sending them tons of information/links on long COVID/mecfs, they seem not to be able to acknowledge it's an actual 24/7 thing, so coming from a doctor's voice like yours, I'm sure it will strike them and make them understand the disease is real and debilitating, albeit no one talks about it. Thanks Danilo.
Danilo, this is a great video! Could you please record, even a much shorter one, in Italian please? To show my parents, who still don't believe, like many.
very difficult to do both versions for each video.
I think the best resource would be to give them my book
Great video!
🙏🏿
I loved this video thank you. I think you struck a great balance between describing the serious impact of long Covid and injecting some optimism and hope for the future. Thank you
thanks a lot!
Just wanted to share that I appreciate you making videos, but for me and I think many others, text is more accessible as it takes less energy / concentration to process
thank you Svea, I am sorry for that. I’m trying to do some videos and some text as others told me that reading is too difficult. Anyway, for all videos you should find the transcripts, so should be able to read . let me know
All good, I am happy that for others video is more accessible!