Living with ME/CFS

We're highlighting a day in the life of a Sanna Stella, a person with myalgic encephalomyelitis (ME), otherwise known as chronic fatigue syndrome (CFS), or ME/CFS. In this video, Sanna gives us a glimpse into her life, and the ways in which this disease has altered it.

[@watercolorartist646]

Iam sure I developed this following the Covid19 virus. This spring 2020. The fatigue is the worst, each day is a struggle. I only plan to accomplish small tasks each day, then I must lay down, rest 1 hour, try again for 30 mins, rest again, and so forth and so on . Iam 76 Years old, but before this I was teaching, shopping, painting, sewing, gardening, Very busy life.

[@KidCity1985]

I got it from Cytomegalovirus in 96.

[@nanallen1]

@Watercolor Artist Gee, I am sending hugs and understanding. I was totally bedridden one year- age 49. Had done quite well for many years, but have slipped back this year. I keep hoping that someone begins to address why it is predominately women who get this. My onset was an injury, but my son’s onset was Epstein Barr Virus, 1986, age5. ( well documented by lab studies). Wondering if there is an underlying structural issue - neck/ pelvis ? That predisposes people? Son was delivered by suction - they hurt his neck. Long story. So sorry that this Covid virus was life altering. ❤️

[@madlainak.4934]

I hope you will get better... I am worried for everyone

[@FionaEm]

You're doing the right thing by resting and breaking up activity into small parcels. Keep going 😊

[@beverlycrawford7859]

I have heard this is happening after Covid. So sorry.I had a flu in 1988 was 50 in career I loved have not been well since am now 82. Have heard of support group for covid long haulers connect w/ Survivor Corpa online. Hope it is help.good to have people who understand. ME/CFS has been ignored by CDC in 89 for years now there is a bit more support. Blessings to you for help soon.there are too many to ignore all of you. I have hope. Bev C

[@R.C.R.]

Please make more broadcast like this. It shows the side of our illness that the outside world doesn't see. Thank you for being so brave to show us your story.👏👏👏

[@beverlycrawford7859]

Thank you so much for helping to explain my illness of 32years to my family.

[@DM101L]

30 years for me, and I live alone. No one knows what we go through.

[@tousift7822]

@@DM101L I want to run away from my home and live alone with someone, I have me, fibro and peripheral neuropathy severe

[@user-jd3pr8bm1p]

Did you ever go to a psychiatrist?

[@Annmarie123ize]

I am the same severe Fibromyalgia and Severe ME. Severe whole body pain, severe fatigue and brain fog, paralysis everything make me ill and Worse, deteriorates me. I spend 22 hours in bed.

[@valeriepurves5787]

I have this and am almost at the same stage. It s a horrible illness painful and life restricting

[@bazmarty6084]

Thank you for your bravery and courage in making this video and for sharing what your life is like.I understand.I have M.E.You are not invisible now.thankyou😊

[@k1ghz960]

Thank you for doing this, very few people know what happens when we are not in public. Zombie is my best description, it's a god-awful disease and everyone needs to know the truth about it cause they only see us when we are at our best, which is about 1% of the time, the rest of the time we are nearly totally disabled. We need more vids like this.

[@vkhan5431]

Thank you for your time, effort and energy to bring awareness. ME/CFS should be even more relevant now as it likely that it is also caused/triggered by Coronavirus/COVID-19. ME/CFS has been largely ignored for at least three generations (60 to 90+ years) in various parts of the world because it wasn't contagious, the victims were largely left to suffer in silence and deteriorate significantly over time, abandoned by the mainstream medical community or in many cases misdiagnosed and mistreated (literally and figuratively) by the medical community and society. It's time to end this neglect and actively research to find a cure or treatment.

[@KidCity1985]

You need a 1 floor home. I'm close to that myself

[@mandydini]

I had to move from a two story to single story. I considered a stair lift, but I was able to move thanks to my wonderful family.

[@Annmarie123ize]

So I feel you, we just got to be strong in spirit.

[@gemmafenner5445]

Helped me to understand this more. I hope they come up with a working treatment soon ❤

[@lucieforand68]

Perfect illustration. I got ill same time as you, diagnosed same time as well. Big thanks to your family. I am much better now. Hope the same for you.

[@thelojay]

I wish I could find friends. I’m essentially bedridden. I don’t know anyone like me, and I get hurtful advice constantly.

[@blovethompson]

APPARENTLY, SOMETHING IS VERY WRONG HERE. 5,000 subscribers, but only 2.5k views and ONLY 146 LIKES?!! HOW DO WE GREATLY ELEVATE THE EXPOSURE OF THIS SUPERLATIVE VIDEO TO THE MEDICAL COMMUNITY? Where are U - NIH?, CDC?, Universities?, World renowned hospitals? WebMD? 1 or 2 million of us HATE being disrespected or thrown under the bus!

[@KidCity1985]

Looks fun in the picture

[@rubidsh8276]

I have ME (maybe) luckily it isn’t severe, i hope it does not get worse

[@user-jd3pr8bm1p]

It's Psychosomatic for the trained eye...

[@florabraswell-nm1re]

Want us to have the real cause

[@skysamples1879]

I'm undiagnosed yet, but I'm very sure I have this condition however I would NEVER have someone take care of me, I'm not saying she's a burden by any means, but I wouldn't want to feel like a burden on anyone

[@ryanneilcarr]

This isnt M.E.

[@Mario-kp8mj]

😢👏❤️🇸🇰