My pharmacological approach for Long Covid and ME/CFS

(while waiting to have funds for a trial)

Dear All,

here I am sharing with you a slide I presented to our pediatric Long Covid meeting in Rome, which was a great success.

As I mentioned, We all want trials for pediatric Long Covid asap, specifically I do want trials for pediatric Long Covid asap. I applied more than once to have funds for trials for pediatric Long Covid (two failed, one pending). This is a difficult process, particularly in a country like Italy where this condition is not taken seriously.

However, I think that while we wait for trials we need to do something in the meantime, as some children are extremely ill. The typical child with Long Covid can have the same quality of life of any severely ill child with a ’typical’ disease (eg cancer), but with no pharmacological option. Some young people took their own lives or seriously thought so.

I think in this scenario we have a dilemma.

What would you do?

•Nothing, wait for years if any definitive news come out

•Let’s see what the literature tells us, what we know from ME/CFS, what we can do while we wait for better evidences

I know the famous hyppocrate’s motto, “first do not harm”, however, is it still entirely valid in 2024? Doing nothing for such a severe disease, isn’t it harming in 2024, when we know so much about long covid (and ME/CFS) and we have experience with several drugs that can be repurposed?

My answer was, therefore: “Let’s see what the literature tells us, what we know from ME/CFS, what we can do while we wait for better evidences” . Also a reminder that >90% of clinical practice of a pediatrician is ‘off-label’.

So, while I’m trying to have funds for anti coagulation trial and a rapamycin trial, here is the step by step approach I usually use with my patients: