Search results

My PEM always starts within the 12-14 hour window, except for only one time (in 28 years) it started 20 hrs later. I was so happy when I thought I had missed the bullet- but no.

I start slurring, swaying and feeling exhausted after talking for over an hour on a 'good day'. Are there tests that measure what is occurring in our brains? It's not the typical PEM I experience from over exerting physically, but it's very debilitating and affects my physical stamina.

What would have been the crucial blood work taken in the early weeks?

For me it feels more like low blood pressure and increased heart rate, in an attempt by the body to maintain blood pressure?

Feeling severely dehydrated during PEM is a huge issue for me.

I'm out too!

I cleared my history and signed in as a UK participant hehe.

I tried but I got a thank you for completing the survey. Perhaps they are only accepting UK participants?

"I am also discovering new areas of damage: I have now become incredibly clumsy. I was never the most lissome person, no one ever called me graceful, but my clumsiness is off the chart. If I reach for a glass, or take something out of a cupboard, I will knock it, or drop it on the floor. I have...

From my understanding is that most pwME follow an elimination diet to manage their symptoms?

@Gecko The link you provided is incomplete.

Thanks for the correction! I will pay better attention ;)

@lunarainbows Thanks for posting this. I had stopped reading daily updates because of all the misinformation circulating. Totally agree!

@lunarainbows I was referring to an interview I watched with John Brownstein ID epidemiologist (mentioned in the link you provided). He also said that their data indicated that they saw huge increases in ppl searching for GI disease-diarrhea which increased at level that they'd never seen...

Disease surveillance have satellite images of hospital parking lots skyrocketing in Wuhan hospitals months before the WHO announced the pandemic. They were also filling up the end of 2018-2019, greater than any other time period in previous years.

I posted an article earlier on dysautonomia somewhere but can't find it. One theory is that the inflammation triggered by COVID-19 damages the autonomic nervous system, which affects functions we don't consciously think about, such as digestion, sweating, sleep, heart rate and blood pressure...

What you describe took me 5 1/2 years to reach that point. During the first several years of illness I was only able to 'build up' when I started feeling better.

For me it varies from day to day, but when in PEM I'm highly sensitive and jumpy. Years ago when I took mg/taurine injections you could have blowened an air horn right beside me and I wouldn't have even flinched. Maybe I was taking too many shots, but boy did it feel good.

The article does mention PICS (Post Intensive Care Syndrome).

Yes, he has a history of this. His lab was shut down years ago.