I just looked at the page
@NelliePledge linked to. Its hard to work out what they're actually planning to do, which makes me very, very suspicious.
As an aside, I thought this was an odd thing to say:
MS has a known neurological aetiology (demyelination and axonal damage)
Its like they think that MS is
caused by a neurological impairment. But that's kind of arse about face. As i understand it, the primary disease mechanism is inflammation and a corollary is neurological damage. The most logical model is that the fatigue in MS is due to the inflammation, not the neurological problems, because it appears early in the disease (usually before diagnosis), and before there is significant neurological damage.
I understand that the BPS view is that fatigue in MS is "psychological". We're not the only ones who get brushed aside on that front. So hard to knwo what these folks are up to.
Recently, I've talked to a few people with various autoimmune diagnoses, and some say when they ask for help with the thing that really impedes their everyday function - fatigue - doctors tend to just brush it off. The only disease features that seem to capture medical attention are those that are objectively observable (e..g, on a scan) and those that might shorten the person's life.
It seems that doctors are still really only interested in quantity, not quality of life.
