Catching up on #MaeveInquest today and I have a few thoughts.
Begin rant
If I had a patient with an illness I knew little about, you’d bet I’d be digging into the literature, looking to experts and finding the best clinical advice I could.
Instead we’re seeing the consequences of hubris, overwork, and stigma.
#MECFS #MaeveInquest
Hubris is two fold.
There’s the systemic hubris: medicine knows everything there is to know about the human body. Therefore anything outside that knowledge “isn’t possible.”
Plus the individual hubris: If I don’t know the answer, no one does.
As many of you know I tipped over into severe this past year (not good).
I'm now housebound.
Depressingly l also lost the ability to listen to music. I had limited how much I listened before but now even 1-2 songs was too much for my brain and could trigger PEM.
#MECFS
I should add I was really surprised by this drop because previously I was always able to handle auditory stimulation better than visual stimulation.
#MECFS
But recently I’ve discovered ways I can sort of listen again in short bursts.
Discovery #1 - Music I’m familiar with is less likely to crash me. My brain knows what is coming and when.
This 🧵 mentions suicide, euthanasia, medical neglect.
And anger. Lots and lots of anger.
#MECFS
Yet another person with Myalgic Encephalomyelitis (ME) left this earth.
I’ve lost track of how many that is now. The posts appear every week or two. This person died by suicide. That person is setting a date for euthanasia.
#MECFS
It’s depressing, but expected and well, somewhat accepted.
Underneath you rarely read the trite phrases you see amongst the abled: if they only knew how much they were loved, what a waste, check on your loved ones, etc.
I thought this might give you some perspective @JonFavs
From the earliest days of the Covid pandemic, people with #MECFS sent out warnings that there would be a large wave of a post-Covid condition like #MECFS
But no one listened.