'The Senate committee that has been examining Australia’s handling of the Covid-19 pandemic has recommended the establishment of a royal commission, arguing the case for a full-blown inquiry with investigative powers is “overwhelming”.

So‼️⁉️

The thing that only the sickest are saying outloud is that the LC/MECFS is progressive and kills.
We are early in this pandemic.
But the LC deaths are rolling in. Many resulting from poor health care.

When you minimise, you minimise EVERYTHING it seems
#MECFS #LongCovid #SaveCarlasLife

Neurologist here: These are clear epileptic seizures triggered by reduced blood volume because you forced a patient with neurovascular irregularities due to her dysautonomia to sit! We need help to #SaveAllegra . She is at RUMC in NY. Please share this message #MECFS

Neurologist Mom No patient should need to have a parent who is a neurologist in order to be treated for having seizures. This is beyond torture. My 💔 for Allegra, for Millie, for Carla and the many other cases who preceded them and the ones we don’t hear about. It’s clear medical malfeasance.

I'm amazed to see people attempting to teach a seasoned neurologist about epileptic seizures while I'm advocating for someone in desperate need of support. Sorry for the block; I'm avoiding unnecessary noise to focus on essential advocacy. #MECFS #SaveAllegra

“Because our suffering is beyond your comprehension, doesn’t mean it doesn’t exist”.

Stop psychologising #MEcfs A protocol for care of severe ME pts must be created in line with NICE guidelines #BringMillieHome #DontLetMEDie

GMC Royal College of Psychiatrists Royal College of Physicians Care Quality Commission

How many Australians have been diagnosed with FND?

My message about the treatment of Severe ME patients in NHS hospitals: patients, families, carers feel stuck between a rock and a hard place.

#SaveCarlasLife #ExposeMENow

All of these videos, to my family, are so familiar and distressing.

But please know - mine stopped. Yours can too.

#SevereME
💔💔😢😢😢

i was gonna wait until after breakfast to post these but since its hard to breathe and my bp is undetectable this morning i present!

chair, a memoir of GET from two days ago:

honorable superlatives include this moment before chair where i LITERALLY FROZE and my neck couldn’t fucking move due to how swollen i felt.

would anyone here care?? nope!

This is what MECFS can do. Parts of your body, whole body, hours, days. It makes you so sick, it's so hard.

This is James updating for Hannah, for the third time in less than a week, she has been transported to a hospital by ambulance due to repetitive seizures and vomiting. Will update as I can.

Angry Redhead - [email protected] 😷🌈🐈⛩ ⚔️ Prof Gemma Carey, PhD MMedSci That's very unfortunate😞

These prolonged seizures, although rare, are well described. ICU admission can be very prolonged.

Long-term outcome in new onset refractory status epilepticus: a retrospective study

ccforum.biomedcentral.com/articles/10.11…

Daniel Moore Julie Houston @SerieveMission Sorry, I deleted my tweet by accident. Adding it for anyone looking for info on seizures/convulsions/tremors & #MECFS .

I had severe nausea due to my #MECFS & my horrible & very accomplished doctor took me off the only medication that was helping, cold turkey. I didn’t sleep a wink for 2 weeks & had violent full body convulsions for 38 hrs at a time. My doctor didn’t care & refused to help.