Solving the mystery of chronic fatigue syndrome

For decades, no one has known what causes myalgic encephalomyelitis (ME, commonly called ME/CFS). As a result, this debilitating disease has been very difficult to diagnose and even harder to treat. Now a collaborative JAX research center led by Derya Unutmaz, M.D., is diving deep into the biology of ME/CFS patients to find a root cause, which may lie in their own immune systems. If successful, the work will provide patients with clear diagnoses and effective therapies.

[christiandornan]

The worst thing about it that it takes away the enjoyment of the little simple normal things in life like walking, showering, sleeping well and going out enjoying life without feeling tired.

[neilmiller]

I was diagnosed with ME/CFS about 5 years ago. The first years were pretty horrible, especially with the reaction of workmates and friends who seem to think it´s all in your mind. I also don´t tell people I´m sick and just struggle day-to-day to work and manage my energy. I have less bad days now but the feeling of isolation, that no one really understands what i´m feeling/struggling with, is the hardest part to deal with.

[riohenry]

It’s true that we 'pull it together' for special occasions, for a few hours. We drug ourselves up and do our best. Not many people see what this disease really looks like. We all pray for curious doctors and researchers. They are our only hope.

[MM-dbri]

I use to dress up and do my makeup and enjoy myself. I no longer enjoy my life and go out w my best friends. It's all I can do to work and I just received a final written notice for missing work and not keeping up w work load. The guilt is insurmountable. Nobody wants to come home and go straight to bed on a heating pad. I dont recognize myself anymore. Feeling like you have the flu everyday is not living. We are not lazy or making it up. I'm so fed up w docs and people judging me.

[Fireflyepic]

Used to run 200 miles a month, regular half marathons. Got hit with a sore throat and have had this for the past 10 months. Swollen lymph nodes, intense fatigue, can barely walk up the stairs. I sit on the floor in stores to rest. I can't support my back when sitting. And I can't navigate road systems or, at times, remember where I am.

Friends and family believe me because they knew who I was before this hit me. I could run and think clearly. Now I am winded going up stairs.

Negative for lymphoma. Negative for STDs. Never had mono-- negative EBV. Normal-ish CBC. But never ending swollen lymph nodes and unending fatigue.

If no one in your life believes you, hear me out. I believe you. I am here with you.

[glengraus]

I completely understand 100%. I feel like my life ended sept 21, 2009 around 5:45. The first years I thought were terrible, not being able to workout, ride motorcycles, work, and so on. It has gradually worsened since then. I would do anything to get back to the level I was out 3-4 years ago. I just wish people would know that I didn’t turn into a deadbeat with no ambition or desire to get better. It’s all I think about 24/7.

[rebeccajar]

I've had CFS and Fibromyalgia for 8 years...I keep praying for a diagnostic test and a treatment plan that works. God bless and heal us all. 🙏 ✝️🕯🕊

[rachaelpreddey]

This has to be one of the most down to earth stories I have watched on CFS I have had this debilitating condition for 12 years and genuinely feel NO ONE understands this horrible condition unless they have been thru it so wish there were more effective treatments
My heart goes out to everyone who suffers from CFS

[loriengland]

This video about Shannon just broke my heart. I’ve had this disease for four years but it feels like a lifetime. The suffering with this disease is horrific. Yes, we need more funding for research but we desperately need some effective treatments. Our quality of life is almost nonexistent.

[larryh.russell]

Devastating watching this. What a beautiful woman. Got her life stolen from her right in its prime. Endless pain, suffering and agony - so much fighting. Hope she gets a miracle.

[MrMashyker]

I wish luck to the sufferers and the researches

[MrDiomer]

My close friend been diagnosed with CFS a year ago and for that time she regressed from moderate to severe stage where she bed bound 95% of time. So far every meds she tried didn’t help and it breaks my heart. But I keep believing she will get better and I’m sending my best wishes to all touched by this horrible sickness, don’t lose hope guys! Praying for all of you 🙏

[jeffking]

I went to Mayo after 3 years and was DX’d with ME/CFS, I’m in year 10 now. The only reason I made it this long is because of my mom, she was my reason to just exist. I lost her in August and now I have no one, and im so tired. People don’t get us, my mom at least saw my day to day and understood better than most. My phone stopped ringing years ago, I don’t have any friends or companions nor will I ever again. If I can’t even be a participant in my own life, I sure can’t expect anyone to sign on for this. I talk about my life before ME as my previous life, because in many ways my life ended 10 years ago, I barely exist today. One thing I never expected was the way that stress can quickly trigger a crash, something goes left when I was expecting right and it destroys me. I’m not suicidal but I won’t lie, I often pray God please just take me, let me go to sleep and not wake up. I’m lucky to get 10 semi productive days in a month, spend upwards of 20-22 hours a day in bed, would say im 90% home bound. Sorry I’m ranting on. It is a miserable lonely experience I would not wish on anyone.

[cartertownsend]

I've suffered for 20 years and every doctor specialist keep telling me it's in my head and I'm depressed. When in my head I want to do things but most days I'm too tired. I take all vitamins to boost my immune system but only helps half the time

[picassocal]

ITS SO HARD. I feel like I can’t do anything because I’m exhausted all the time it’s terrifying!

[FORTRANever]

Overexertion when feeling somewhat only leads to what I call a "crash and burn" event. That is why it is important to pace yourself.
It appears that some young COVID19 patients have strikingly similar symptoms that have gone on for several months.

[tgferg]

The genius who named it Chronic Fatigue Syndrome - actually caused harm to the patients.

[kevinvontscharner]

❤️❤️❤️ That is what I live with since 2010 due to a MeningoEncephalitis. Indeed surprised so few doctors even know about it. It took 3 years for a Neurologist to realize that nobody had explained me the problem. I had never heard about it. During the first year or so I thought it was just a question of time. Have now got more and more information that indeed make it clear that millions of people live with this. I try to keep hope that there will sooner rather than later be a solution for me and for all the other people that are concerned by this.

[mythriftedhomeandgarden]

I was crying while watching this video because I feel bad for the patient and crying for me because I think even my husband and my children never understood what I was going through when I first got sick and can barely get out of bed. It didn’t help that I was the major breadwinner in my family and needed to keep working even if my brain was foggy and can barely hold my head straight. I am a lot better but not completely recovered and came across this video while researching on how to completely recover from CFS.

[godsgrace]

I know the feeling.. you never feel rested..the dizziness and vertigo...you will sleep but never feel rested ..this is what i probably have cause the doctors dont know what wrong with me..after i had my twins and had to tak w blood transfusion is when i got this hell. Thank you for your video