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Looking forward to this! Especially after hearing how representative Katharine said the data seems to be in some aspects.

Sorry but the deal here is you have to put up with heartfelt thanks as well as heartfelt disagreement. Thank you Jonathan :)

Some other thoughts which may be of use to draw from, more implementation details so maybe mot the direction we should take but still Regular ongoing contact (rather than only for emergency interventions or referral for a fixed period before being discharged back to a GP) Based on ongoing...

Oh I like that argument! Maybe one of the more flippant or abstract suggestions would be better after all then. Something which can mean nothing and have no baggage but then have the condition we are discovering grow on top of it as we find more?

Same. I’ve said it before but if people really believed we needed research and care, then we would get it. The name is an excuse they use for other prejudice. if doctors really don’t care about names (as has been proposed) then why do they also care so much about names that they dismiss us...

As a species we’ve become pretty good at finding negative connotations for most words!

ME - Massively Enervating ;)

I think it accurately describes what happens to many of us, either periodically or constantly. It’s a great word and may work in some of the settings you’re thinking off? You’re probably best able to judge that. But I think it probably does not work as well for normal people, patients or public...

@Sean makes a good point. While I agree a name change would help I don’t really think the name is the thing to focus on for now. Or where the problem lies. It’s the concepts behind it and what it means to different people, its the ideas they encompass and connotations they come with that seem to...

Another great article which is still getting the default response from government Cynical translation: We are committed to delivering nothing for the severely affected and are still not facing the scale of the problem that exists. What we are asking for in terms of research funding is...

Some other internet papers on OBSCN in that journal though like this one https://www.nmd-journal.com/article/S0960-8966(26)00269-5/fulltext Which also deacribes an atlas of alternative splicing psivis.it.helsinki.fi:3838/MyoSpliceAtlas-Beta/

That’s a lovely link!

Sadly not even a blip nearby in DecodeMe for OBSCN. Roll on SequenceME for a more complete picture.

Carefully? Like the cheese

Maybe something exotic sounding? Nianjift syndrome. Named after the mythological Chinese Nian, a beast which periodically causes destruction and is sensitive to loud noises…. Nah it really stands for No I Am Not Just Incredibly Fucking Tired

Agreed, a new name would be great. And I’d love it if we could use ME/CFS until then. Unfortunately many doctors or medical professionals I have tried that with insist on quite pointedly ignoring the usage and calling it chronic fatigue or CFS back at me. And lets not even start on the media...

The ideas around the possible involvement of folliculostellate cells in these remodelling or periodic life events seemed a really interesting possibility. I’m sure it wouldn’t be the only factor but maybe one part. The papers I saw weren’t all about sheep but for some reason those are the ones I...

Thank you @Sasha for bringing this up and @Jonathan Edwards for trying to herd the S4ME cat population :emoji_cat:

Good to confirm. They’re completely unmodified content wise. Editing sounds like hard work! And I know you’re not an official spokesperson (so if anyone were to have a problem it would be my responsibility not yours) but you’re the closest we have and tend to have a good insight into these...

I always get confused on the line between severe/v severe and exactly who these services are targeted at but we had some discussion and there are ideas in this thread https://s4me.info/threads/our-own-delivery-plan.45305/ I’ll see if I can pull out some more one line asks from there over the...