Two papers have come out recently that look at reclassifying the central disorders of hypersomnolence. They come from two different camps in the field, one narcolepsy focussed, the other more general and from Europe. Both have the same aim of sorting out the muddle in ICSD-3. and are authored by experts in our fields, so they are worth listening to.
If you have the time or inclination, try to give them a read, but if not the main thrust is around amending the classifications. The aim now is for Narcolpesy with Cataplexy, Idiopathic Hypersomnia (with long sleep time), and then a mixed group covering Narcolepsy without Cataplexy, IH (without long sleep time) and possibly a few other minor variations. The naming is actually one point of contention, and linked to the access to medication below.
Amongst other things the papers also look at how we will be diagnosed, how useful or useless the MSLT is, why depression can be included in a Narcolepsy with C diagnosis, but ruled out for everything else (and the impact of mental health disorders), and the search for biomarkers to make our lives a little easier.
Some of the sideline discussions have also included access to medication such that in both the US and Oz, having a Narcolepsy diagnosis gives one a much better chance of being treated properly than with IH, and people want to know why doctors/insurers/government can’t get this sorted out. Imho its better we have the correct diagnosis so that the prevalance of our illnesses can be understood. Access to improved medication in the UK would be a wonderful thing, but the MHRA and NICE move at a snail pace. However patients, doctors and support groups need to push harder to make these changes happen.
https://www.sciencedirect.com/science/article/pii/S1087079220300496
https://academic.oup.com/sleep/advance-article/doi/10.1093/sleep/zsaa044/5810298
please read if you can and make your thoughts known to your consultant and to any organisations you might subscribe to for your sleep disorder. Your voice is as important as any other in this debate as it will affect you more than any researcher.