User talk:Simon F

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Summary: List of ongoing research for cures for ME, Long-COVID and Post-COVID (+6285 bytes) -- JaimeS (talk) 00:05, January 27, 2024 (UTC)[edit source | reply | new]

Hello! Welcome to MEpedia! Thank you for creating your first new page.

We want the information presented here to be integrated with the other information on the Wiki. We want our users to have context regarding the studies rather than solely have a page that lists studies underway.

We recommend that you add this information to pages on the names of each drug or intervention (or create such pages if there is no page for that drug yet). These pages would be categorized as potential treatments and you could then cite the study that is underway as one piece of information amongst many.

Our plan is to delete this page once the information has been moved; I've scheduled it to be removed later next week.

Re: Summary: List of ongoing research for cures for ME, Long-COVID and Post-COVID (+6285 bytes) -- Simon F (talk) 08:58, January 27, 2024 (UTC)[edit source | reply | new]

Hi JaimeS,

Thank you very much for noticing my first page and for your valuable inputs!

I fully agree with you that the page I created has a lot of potential for improvement (e.g. I'm not happy with the title, the distinction between PASC and Long-COVID is ambiguous (it might be better to stick to the terms Long-COVID and Post-COVID), the full URL in the table takes a lot of space, a lot of studies are still missing in this table, some studies have already (preliminary) results published and this should be reflected and linked, too...) and of course that users should be provided with further context. However, I do also like the idea of having a table summarizing "all" the ongoing research for treatments.

I am myself strongly affected by ME. I can only walk about 100 m before I need a long break and no more than 800 m accumulated over a full day without triggering PEM. What currently gives me a lot of hope is the fact that there is a lot of research going on. This table allows me with a single glance to believe that soon a remedy will be found to alleviate my symptoms or that I will even have full remission one day. I placed this list on MEpedia in the hope that it will help other affected people to feel optimistic about their future, too. But - once the quality of the table is improved - it can be also useful to researchers.

If possible, I would like to kindly ask you to allow me to keep the table (be it on this page or another or temporarily on my user-page) and allow me to improve it. I would link every drug/treatment/supplement listed in the table to the corresponding MEpedia article and thus allow the interested readers to inform themselves more in depth there. In the long run I would also like to extend the list to not only cover ongoing research, but also past research.

What do you think?

Cheers, Simon

Edit: Oh, I see we are having this discussion on my user-page. I started editing it here (first time I write a wiki article) and then copied this page to Ongoing_research_for_cures for better visibility and continued working on it there. Is my understanding correct that my user page is my personal playground for new pages?

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