Tight-laced

@Tight-laced@kbin.social

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Tight-laced,

Showing 2.9 also for me in the UK.

Tight-laced,

My husband has ME/CFS, like the Physics Girl. It's an absolutely devastating illness. He was a very active 35 when he was told there's no cure, not even a treatment, and that pain/fatigue was his life now for the rest of his days.

We've been around this long enough to see promising drug/cure/treatment/diagnostic tests come and disappear, month after month, year after year. The influx of funding/awareness linked to Long Covid is incredibly welcome, but many instances are repeats of previous ME/CFS research, so it holds up previous findings but doesnt drive anything forward. There's not been any real progress in the last 2 years, and the funding/focus is waning. I may be jaded, but hopes are low. I also sincerely hope I'm wrong.

Tight-laced,

I hate to say it, but while hopeful, it's unlikely.

I've been around the CFS/ME community since my husband got it 6 years ago. There a small handful of people who have recovered, but generally they've been "misdiagnosed" with CFS and then correctly diagnosed/treated. The majority live with it for the rest of their lives. It's also why the life expectancy is only 50 - many simply cannot live with that level of pain/suffering day in, day out without any real hope of improvement/relief. Its a dreadful illness.

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