I am actually concerned that it's a bit embarrassing this new name, although can see it's come from a very well meaning place. I'm really torn about how to feel about it all. I think doctors won't think any more of it than ME/CFS and its a bit contradictory in itself in how it reads and could cause more confusion. I think it would have been great if they recommended a name review in a couple of years when we are likely to have a bit more research.
The concrete stuff they have is that there is immune dysfunction but they have focused on exertion only in the name. It's seems weak and weird. Exertion intolerance wording means people will focus on that instead of systemic and disease. The explanation how they relate is complex so I think there is a problem there. The average person with no knowledge of the illness will think how can you have an intolerance if its a disease. You just stop doing what's causing the problem - like lactose intolerance. Doctors will have the same attitude to this that they have to ME/CFS and roll eyes.
I think they have missed the mark in realising what we don't like about our current name and given us something that is very similar but more confusing.
It could be possible that because the new name gets focused on with this rollout the actual things that are good in the report will have less highlighting in the media. But then again I'm so torn with all this because its encouraging debate and highlighting the illness and if that means Health Professionals getting more educated following this IOM - if that happens that could be really great.
Part of me thinks this could open us up to more ridicule until we have more concrete information. But they have said that this name could be obsolete in a couple of years anyway.
is it possible to have a poll option for keeping status quo and recommend name change review possibility in 2 years?