Umbrella name for ME, LC, POTS, etc

[Trish]

I think we should avoid emotive words like misunderstood, ignored, unexplained, under-researched in any umbrella term if we must have one. They too easily invite either dumping in the psychosomatic dustbin, or assumptions that patients are whinging again. It reminds me of my frequent misreading of 'underserved' as 'undeserved'.

 

[V.R.T.]

This may not be the best example. When I got sick among the first symptoms I had were changes in basic sensory input, including smell and touch. Everything just felt different, in a roughly comparable way to when you have a bad flu or a fever.

Those changes were immediate, often subtle & variable, and have not gone away.

I've been thinking about this because this is exactly what happened during my prodromal onset - everything has felt 'different' ever since, even during periods where I felt better overall there have been weird quirks of sensory input that I have had to ignore. After my definite onset and especially after my deterioration this has ramped up. As you say, basic sensory input just feeling 'off', sometimes in a subtle way, sometimes in a really unpleasant way.