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.

[@christiandornan1308]

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.

[@erniehenshaw4066]

Couldn't agree more. You have to struggle to put on a smile.

[@erniehenshaw4066]

It's like a bad dream you never wake up from. It's relentless.

[@mythriftedhomeandgarden830]

I hear you. The thing that I miss the most is dancing. More than a music or 2 can be exhausting even with simple steps ☹️

[@anthrax565]

I can’t even eat. I’m just not hungry. I try, but it’s revolting.

[@MohamedHassan-cm8ni]

Take valacyclovir 1g every 12 hours for at least 6 month .

[@neilmiller9635]

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.

[@susank.6296]

Neil Miller I feel for you

[@maiguelmoreno9027]

Thanks for the Video! Forgive me for the intrusion, I am interested in your thoughts. Have you considered - Dinanlinson Rebooting Health Approach (search on google)? It is a great exclusive guide for getting rid of chronic fatigue syndrome without the hard work. Ive heard some awesome things about it and my best friend Jordan finally got excellent results with it.

[@jesusmaican675]

Appreciate Video clip! Forgive me for chiming in, I would appreciate your opinion. Have you heard about - Dinanlinson Rebooting Health Approach (do a search on google)? It is an awesome one off product for getting rid of chronic fatigue syndrome minus the normal expense. Ive heard some decent things about it and my cooworker finally got amazing results with it.

[@raygames8712]

Appreciate video content! Sorry for chiming in, I would love your opinion. Have you thought about - Dinanlinson Rebooting Health Approach (should be on google have a look)? It is a great exclusive product for getting rid of chronic fatigue syndrome without the headache. Ive heard some great things about it and my best friend Jordan got amazing success with it

[@stefanicastillo7023]

Neil Miller Excellent video content! Sorry for chiming in, I would appreciate your opinion. Have you heard the talk about - Dinanlinson Rebooting Health Approach (search on google)? It is a good one of a kind product for getting rid of chronic fatigue syndrome without the hard work. Ive heard some pretty good things about it and my mate got astronomical results with it.

[@rebeccajar5929]

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. 🙏 ✝️🕯🕊

[@vinvan4237]

I had it and recovered. I write about how I recovered in book thedetoxcure . guide

[@MM-db1ri]

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.

[@alyseranae8274]

reading your comment...I felt like I wrote this

[@helenveasey7318]

@@alyseranae8274 me too, I wish more people understand this illness. People think you are fine is they see you for an hour or two or go to an appointment where you have to get out. The thing is, you can hardly wait until you can get back in bed and constantly struggle to do simple things in the household or everyday things. I try to stay positive and always put out the effort to do something productive every day in a contained home environment. I hope they find better treatment options and more people learn and understand what a debilitating illness this can be. We fight so hard to do normal things, even on a limited basis and it's so hurtful when people think your lazy or its just in your mind. I pray for everyone going thru this life changing condition and know people living with this will always believe and support one another. Love to all, we are in this together.

[@alyseranae8274]

@@helenveasey7318 its very hard living with this.

[@MattBlacInc]

@@alyseranae8274 a tough gig for sure.

[@niltomega2978]

I don't suffer from it but I can imagine the ordeal. When people are feeling good they just can't understand what its like to always feel so bad. I hope you get better :)

[@riohenry6382]

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.

[@mdee860]

@Rio Henry - Spot on. I/we use so much adrenaline just to attend a 'special' or important function. The next few days are zombie like. No one sees this... because we hide that and are homebound. They only see us out on a rare good day & yep: oh, you look great or our favorite: you don't look sick! 👍 They don't recognize that it took me 3 days prep to get to that special function. Bless the advocates & researchers.

[@ryanmichelz94]

I don't even like going to things like that. It's so hard for me to deal with people asking me how I'm doing, especially family members

[@sherryblatt4459]

@@mdee860 I’ve had this since the birth of my fourth daughter! I had never been sick or tired!! I remember what I use to feel like with my endless energy even while pregnant! When she was a month old I developed a very bad fever and my husband worked out of town so I was left caring for my children all alone! So too shorten my story I have been lightheaded and have weakness in the legs and so tired all the time! I have been to every doctor I’ve had test after test and nothing shows up! One dr said you’re in perfect health “ are you depressed”? YES IM DEPRESSED BECAUSE I CANT DO ANYTHING!! 😔 I decided to limit myself ( after all these years my husband still thinks it’s depression) he doesn’t understand how I feel everyday! H s almost six years older then me and goes and goes! The difference is when he’s tired it’s a GOOD tired!! When I sleep I wake up in the morning feeling like I did the night before!😓But I pray everyday that I’ve been given some good days that I made myself enjoy with the help of my Lord and Savior!!Pray gets me through! I’m older now and I have outlived so many of my family and friends!😓 I did so much research and I have to add one thing, adrenal fatigue may be the culprit but I don’t think there is anything for that either! I pray for you all and just pace yourself, tell yourself I’m going to do this today or that today and know that when you get home you can rest!! 🥰 God bless you all!!❤️✝️

[@MrMashyker]

I wish luck to the sufferers and the researches

[@dield22k]

Nice Video clip! Sorry for butting in, I am interested in your thoughts. Have you researched - Dinanlinson Rebooting Health Approach (do a google search)? It is an awesome one off product for getting rid of chronic fatigue syndrome minus the hard work. Ive heard some interesting things about it and my mate at last got cool success with it.

[@davidvegas6112]

This was great, thanks, been searching for "myalgic encephalomyelitis causes" for a while now, and I think this has helped. Have you heard people talk about - Diyadelyn Ziyily Idea - (do a search on google )? It is a good one off guide for getting rid of chronic fatigue syndrome (CFS - Also known as myalgic encephalomyelitis or ME) minus the hard work. Ive heard some pretty good things about it and my co-worker got excellent results with it.

[@MARTINCEKCAR]

This is just superb, I've been looking for "coping with chronic fatigue" for a while now, and I think this has helped. Have you heard people talk about - Diyadelyn Ziyily Idea - (do a google search )? It is an awesome exclusive guide for getting rid of chronic fatigue syndrome (CFS - Also known as myalgic encephalomyelitis or ME) without the normal expense. Ive heard some extraordinary things about it and my co-worker got great success with it. @ @Maxim Motyshen

[@danielatomescu3487]

Just wonderful, I have been researching "fibromyalgia and swollen lymph nodes in neck" for a while now, and I think this has helped. You ever tried - Diyadelyn Ziyily Idea - (should be on google have a look )? It is a great one of a kind guide for getting rid of chronic fatigue syndrome (CFS - Also known as myalgic encephalomyelitis or ME) without the hard work. Ive heard some amazing things about it and my neighbour got amazing success with it.

[@tonylars4128]

This was great, thanks, I've been looking for "chronic fatigue protocol" for a while now, and I think this has helped. Have you ever come across - Diyadelyn Ziyily Idea - (Have a quick look on google cant remember the place now )? It is a good one off guide for getting rid of chronic fatigue syndrome (CFS - Also known as myalgic encephalomyelitis or ME) minus the normal expense. Ive heard some unbelievable things about it and my mate got amazing results with it.

[@jeffking7018]

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.

[@Juzman]

So sorry to hear this man, I had a mild case 25 years ago, slowly got better over a couple of years, but I have never got quite back to pre CFS... can't push myself as hard. You're never alone though, maybe join some CFS forums and chat to others like you, support and sharing is there.

[@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.

[@konosmgr]

Hey brother how's it going, any better now?

[@jeffthomas8108]

I got it after shingles

[@graemesneddon7180]

I got it 8 years ago following flu virus . It ended my career as a Paramedic. Lost some so called friends who didnt understand as i looked ok in their eyes. Took me a long time to accept the illness and my new identity. Learning how to pace using actvity management has helped a lot and helped to reduce the episodes of post exertional malaise and the push , crash cycle . Please dont confuse acceptance with giving up. Stay positive and hopefull but at the same time remain realstic regarding extent of recovery to your former self. Hope my experiences help you in some way.

[@glengraus4529]

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.

[@annatomlinson1529]

look into mold toxicity, Lyme disease and parasites if you can. A good naturopath or functional medicine practitioner can help. I had debiliating CFS symptoms and turns out it was mold toxicity. There is usually a reason this happens -- your body is smart! Don't give up; you can heal. It's often complex and takes a long time, but our bodies are amazing. Highly recommend the book "Toxic" by Dr. Neil Nathan; I've also learned a ton from vivanaturalhealth's podcast. And Cellcore has an innovative line of supplements that people are having great results with!

[@helenveasey7318]

@@annatomlinson1529 thank you for your suggestions and information. I am definitely checking this out.

[@annatomlinson1529]

@@helenveasey7318 Of course! I really want to get the information out that there are often treatable root causes for issues like CFS. I hope it helps you!

[@niltomega2978]

Well you are NOT a deadbeat! You have a medical condition. Sorry the world does not understand...but I do and I'm very healthy

[@mdee860]

@@niltomega2978 - that was such a kind response. Thank you for understanding- we all want our active, productive life back. It's like being trapped in a 95 year old body, but your mind keeps creating To Do lists. Except the To Do lists never get completed & frustration sets in. To those who don't understand: Sure, we wanted to give up a wonderful, lucrative Career...with NO Plan B; we want to give up sports, horses, gardening, cooking, art projects & SLEEP, etc., etc. - just for the fun of it! 🤯😡

[@tgferg67]

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

[@cartertownsend995]

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

[@queenofthebutterflies5212]

I hear you. It is MADDENING

[@anacod9114]

Great Video clip! Excuse me for butting in, I would love your opinion. Have you considered - Dinanlinson Rebooting Health Approach (Have a quick look on google cant remember the place now)? It is a good one of a kind guide for getting rid of chronic fatigue syndrome without the headache. Ive heard some incredible things about it and my close friend Aubrey at last got cool results with it.

[@tanairigonzalez9793]

Me too 😞

[@sammysworld5485]

I’m very surprised no one is talking about biofilms... I’ve successfully treated with taking INTERFASE PLUS, NAC & monolaurin. Just keep in mind that one must consume probiotics w prebiotic when taking INTERFASE... I’ve successfully treated my ME/CFS by following a strict prodigal. Yes it’s 100% curable. Anyone that says anything different don’t know s-t.

[@tanairigonzalez9793]

SAMMY’S WORLD thanks I will order it

[@Puthypower222]

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

[@q.m17]

same

[@ajdonnelly7160]

Hi, I have been suffering from CFS for about 5 years, had totally destroyed my life as I work a physical job. I had been researching it and discovered a few talks online by phd researchers who believed the source of it was brain inflammation. I suffer from a few other inflammation disorders - asthma was one. So i thought I would take a chance, if its inflammation, anti histamines should reduce it to some extent - so I went to the store got some over the counter hayfever tablets and some ibuprofen. Just taking normal small doses. Within 24 it had totally cleared up. I am currently working on my diet removing all inflammation causing elements - processed food, aspartame, coffee + alcohol :/ (i guess it has to be done) Its early days, but I feel like a million dollars. I'd like to try to help others who have it. The anti histamine was cetirizine hydrochloride. One a day, with one 200mg ibuprophen. Also take big doses of vitamin C twice a day.

[@goertzpsychiatry9340]

kzbin.info/www/bejne/nZTMoHaggqqkqK8

[@Anar-hk5rv]

@AJ Donnelly hey any updates?

[@loriengland1422]

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.

[@Rah_6967]

I'm suffering from this now 😢...pls help me out

[@fedfin3869]

I think we should try to fund the research project by ourselves, I mean us sufferers. I am 35, severe, bedbound. Considering how many people are affected by me/cfs, if all of us would donate say 5$ to organisations like OMF, Simmaron research, Stanford me/cfs initiative...we could probably achieve something. So much potential wasted because of no interest from NIH and other healthy people is astonishing. But we should try anything we can.

[@larryh.russell4577]

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.

[@douglasvancier7683]

Yup, that's what we go through.

[@kathygreen6043]

Correct. Your life feels completely stolen. This is my third time. It is hell on earth.

[@oshagyro1988]

@@kathygreen6043I completely agree with you, but what do u mean it’s your third time?

[@kathygreen6043]

@@oshagyro1988 I had cfsme in 1990. Took several years to recover. Had it again after surgery in 2009. Two years and recovered. Now again 2022- present.

[@FORTRAN4ever]

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.

[@queenofthebutterflies5212]

I hope this will bring some more social awareness about our condition and more medical research, tbh! I know it sounds bitter but it's very grating when you're genuinely destroyed and your healthy friends/family say that they understand bc they're "feeling really tired too!!" (I just wish I wanted more from life than a mobility scooter!!!)

[@Portia620]

@@queenofthebutterflies5212 people have no idea how hard it is to just talk!!! I have autoimmune but not this and now my kid is showing signs of this. 😭. She had an illness and then flu and belly button infection from piercing and now this that is going on with infection!!! I am worried about sepsis still but she felt better after a few hours of sleep. I also noticed she was up longer the day she went to ER. She said when getting up had a headache and then later when going to bathroom had rapid fast heartbeat and then went away but she felt super weak.

[@sisypheanmxe8774]

Yeah I wish it was paid attention to before "more important ppl" got it. There's literally only real research on it now bc it's more ppl getting it and younger ppl. Honestly it gives ableism vibes. No one believes us until more "important" ppl get it too

[@godsgrace5503]

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

[@natalie__lu2500]

Mold or an infection can cause this

[@godsgrace5503]

@@natalie__lu2500 wow okay..I'm getting much better thank you

[@natalie__lu2500]

@@godsgrace5503 I’m glad. I’m just saying a lot of people have been getting mold illness or toxic mold syndrome which can lead to further things like auto immune diseases. Take care 💓

[@godsgrace5503]

@@natalie__lu2500 understood you take care too.

[@geminiflower]

EBV is frequently passed through blood transfusions and proven to cause symptoms in people. Most likely cause. I’d check cortisol levels to see if they are low. Look into Ozone therapy.

[@jenniferflower9265]

Mine hit me around 27 as well and feel the same way at 42, that I missed a huge big chunk of my life.

[@goertzpsychiatry9340]

kzbin.info/www/bejne/nZTMoHaggqqkqK8

[@lancetaylor7]

I had dreamed of retiring and doing paintings, now after 16 yrs. of this, I cannot do work other than what I have to do, no creative inspiration left.

[@neohero97]

Me at 20 now im 24 :/

[@MattBlacInc]

Same Here

[@TheUnknown-yx8zc]

@@neohero97 are u kidding me how long does this last? -21 year old who has been feeling fatigued for three months

[@MrDiomer7]

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 🙏

[@PassionateFlower]

She needs to get a full nutritional blood panel ASAP that checks everything Vitamins A, all B Vitamins especially B12, Vitamin C, Vitamin D3, Vitamin E, Omega 3s EPA DHA levels, Iron, Iodine, Thyroid (T3, T4, TSH), Zinc, Calcium, Chromium, Manganese, Molybdenum, Selenium, Zinc, Iron, Magnesium RBC, protein including the entire amino acid profile, Coenzyme Q10, and any others I failed to mention here. A chronic deficiency in even just ONE of these key and vital life sustaining nutrients is devastating on the body but MULTIPLE DEFICIENCIES in any of these occurring SIMULTANEOUSLY???? CATASTROPHIC!!!!!!! BLOOD TEST!!! NOW!!! If you have insurance go get aa much tested as possible covered under your insurance and for anything that isn't covered under your insurance you must pay out of pocket for a private practice company that sells blood tests and then you go to a local lab like Quest Diagnostics if you live in the bay area in California for example or another local lab in your area and then when you get you blood test back see what you are low in and then you must buy high quality supplements and take them daily that correspond with what you are low in and then you have to keep getting re-testes until ALL your numbers are optimized in range. That is how you cure Chronic Fatigue Syndrome it is an illness of vitamin deficiency but you can't just take a multivitamin and be done with it you have to get a detailed blood test to know how low you are in which minerals otherwise you are shooting blanks in the dark with no way of knowing if you're hitting the target. Your friend might have CFS because of low B12 and low Vitamin D3 while another person might have CFS due to Magnesium and Iodine deficiency so you just never know and taking B12 and Vitamin D3 won't help the CRS patient who is actually only low in the Magnesium and Iodine so no one size fits all remedy you have to get your individualized results and individualized plan of treatment!!!!!!!!!

[@PassionateFlower]

Sorry for the typos but that's the real reason for CFS and that is the best treatment protocol, blood test and individualized vitamin supplement routine daily. But doctors can't make money off multivitamins, only "medication" that makes you sicker and them wealthier. It's a sick dumb system doctors are only good for fixing torn ACLs and resetting broken bones don't bother with doctors for curing CFS just getca blood test and take the right supplements and your friend will be enjoying their life again without making an ignorant doctor richer while she lays there dying.

[@RikkeGade]

youtube.com/@cfsrecovery so sorry for your friend. Maybe this KZbin can help? ❤

[@rachaelpreddey7837]

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

[@douglasvancier7683]

Yup, she does just what I did, keeping track of my feelings and symptoms on a day to day basis. I came down with CFS in 1988 and had it bad for 2 years. Mainly extreme fatigue and headaches with brain fog, anxiety, dizziness, joint pain and nerve pain, psychological pain. Finally got better to where I thought I was completely healed. Then every couple of years I got relapses that last about 3 months. After thinking I was rid of it forever after almost 10 years of feeling great I am now in the midst of a relapse in 2020. You think it goes completely away but it creeps back up on you. Horrible.

[@Rah_6967]

I'm suffering from this since aug 19. What should i do? I feel like dying and the feeling is horrific 😢..pls help me out

[@quaqua6917]

@@Rah_6967 I pray for your strength!! I have been suffering for years and I don't have one thing I can tell you to do. Yes it is so horrific that you will feel as if you are dying but you will not. You have to try to put yourself in a positive state even though it's almost impossible to do so. That's just too help you push thru.

[@mdee860]

So true. I always told family & very close friends - it's like a latent virus that suddenly wakes up & wreaks havoc. I've had this a long time, and now am mostly housebound. The isolation & frustration of not getting things done are the worst! Well, those + pain + lack of sleep + nausea + dizziness + brain fog...etc., etc. 😉

[@cindybrown1356]

I was bed bound with CFS, for 7 years, I miraculously recovered and thought I’d never see it again, 18 years later, I relapsed terribly in August of this year. No rhyme, no reason....I’m struggling harder now than when I originally had it in 95-2003. My sincere prayers for you, for us all. This illness is hateful, oh I want so much to be well again.

[@niccolowrld]

Hi everyone I hope this message finds you well! Been sick with probably ME/CFS since 3 months. Would you please like sharing something that has helped you feeling better? Thanks you for the kind support. Sending love and hope from Italy. 🇮🇹😊

[@mythriftedhomeandgarden830]

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.

[@MissBlueEyeliner]

Hi, would you mind telling me the steps you have taken to have improved slightly? I’m at my wits end. It’s been 6 years of hell. I say 6 because I judge it from when I had to stop working. I have epilepsy as well so I can’t tell which was which before that year.

[@mythriftedhomeandgarden830]

@@MissBlueEyeliner I tried ketogenic diet, but unsure it really helped me. Back then ketogenic diet what not the craze that it is now but the physiology behind keto and pathophysiology behind CFS made sense to try it

[@MohamedHassan-cm8ni]

Take valacyclovir 1g every 12 hours for at least 6 month .

[@mythriftedhomeandgarden830]

@@MohamedHassan-cm8ni Thank you! I will se where I can source valacyclovir for that long. I don’t think my PCP would prescribe it to me if I request him for one

[@Mfield111]

Yes crying too!!!!

[@gggame9158]

I have ME, had it for 2 years. Its worse than u may think

[@texasray5237]

Make sure you get a scanner of your brain. I was misdiagnosed for 14 years, untreated for 17 years. In my case the Chronic Fatigue/Fibromyalgia was actually a symptom of hydrocephalus following meningitis. The condition could and should have been detected and treated easily, but, my doctor considered a scanner to be unnecessary and it ruined my life for 17 years. Many doctors don't take this sort of illness seriously.

[@CAZZIEK321]

Please don’t give up hope. I have had CFS/ME since I was 38 and I’m now 60, but it was at its worst in the first 5 years, slowly I have improved, until life is pretty normal now (at least a normal I recognise as worth living). I’ve completely decorated my house and tend my garden, but I still have to pace myself to do these things. In my first 6 months to a year I couldn’t lift my head up off the pillow and had to lay down frequently. My dizziness is always associated with exhaustion, if I’m not exhausted I don’t feel dizzy. I would almost black out if I climbed the stairs. I thought my life was over. I was a mother of 2 young children and I couldn’t even play with them, I felt useless, embarrassed and ashamed. One thing it took me a while to realise in the early days, was that I couldn’t understand what I had done that caused me to relapse when I had felt well(ish) the day or two before. Any exertion would cause me to have a set back but it seemed to take 48 hours before I noticed a decline. I think my main improvements came when I was strong enough to start doing gentle tasks, because although I know I will pay a price 48 hours later I still improved some muscle strength and brain stimulation, maybe even a little joy which in turn, improved my ability to mend. I had no choice but to do some chores even though it made me ill, but at least it help me improve slowly. Now I’m at a stage where, if I go on holiday or go out for the day I manage by avoiding any exhaustion, by taking regular stops and drink breaks as I grow a little tired, by doing that I can keep going all day. You may well think, oh she doesn’t know anything, I have it worse than she did, but I honestly though life was over. It wasn’t. Hang on in there, cling to hope and never give up. Avoid exertion, do a little bit then rest, a little more then rest.

[@cheggs9]

Thank you for this. 💛

[@SongofaBeach2012]

I know your comment is a year old but wanted to thank you. I'm suffering from Long Covid which is basically CFS/ME and am relapsing after a year of feeling mostly recovered. I will take your advice and stay positive I can return to some functionality and rest in between taking care of my 3 young sons. Many gentle hugs to all the CFS sufferers out there.

[@CAZZIEK321]

@@SongofaBeach2012 thank you so much, that really made it all worth while writing. I hope you continue to improve. Xxx

[@mythriftedhomeandgarden830]

Your story is very encouraging. It’s been 5 years since I got CFS and the first 5 months was the worst. I am a little better and have accomplished some projects like DIY home improvements, gardening and decorating but also crashes frequently. Although I pace myself so that I don’t crash so bad. When I was afraid of exerting and was doing nothing for fear of having a crash and burn in anticipation, I started feeling very depressed and useless. I felt I was just existing and not even living. So now I take on projects to do at home on top of my full time job to feel accomplished. I have to carefully pace myself though and accept that I may have a crash. I just reassure myself that the crash does not last and all I need is several days of bed rest, so that I don’t freak out when I am on it.

[@CAZZIEK321]

@@mythriftedhomeandgarden830 Thank you for your lovely reply. Your story is not so different to mine. I’m currently trying to paint the outside of my house. I know I’m pushing myself a little too hard but sometimes I’d just feels so good to try. Taking plenty of rests and excepting it may take a month to complete the job, is acceptable now I know my limits. Xx

[@casadimilano7048]

My best friend got CFS in his early 20’s from glandular fever. He’s a good looking man, as beautiful as the woman in this video. He said exactly what the lady said, my heart goes out to you both, what a cruel disease. I hope they find a cure quickly ❤️

[@geminiflower]

People say ozone therapy and UBI treatments help. Have him look into those two treatments to see if it can help clean the EBV from the blood.

[@SM-zf6ye]

I look back just 4-5 years ago and it’s painful just comparing now to then. Riding bicycles, walking, yard work etc slowly come to a halt, getting out of bed is a task! It’s frustrating never being able to plan anything because I never know how I’ll feel when I wake up so I miss out on quite a bit. I live hobbies in my mind. My MD diagnosed me 7-8 years ago and doesn’t know what else to do. Some days are ok but they never last...

[@MohamedHassan-cm8ni]

Take valacyclovir 1g every 12 hours for at least 6 month .

[@jacquinewton8635]

So tired of living with CFS, thank goodness I don't have it as bad as this poor lady, but it still stops me socializing and making plans as every day is different

[@ajdonnelly7160]

Hi, I have been suffering from CFS for about 5 years, had totally destroyed my life as I work a physical job. I had been researching it and discovered a few talks online by phd researchers who believed the source of it was brain inflammation. I suffer from a few other inflammation disorders - asthma was one. So i thought I would take a chance, if its inflammation, anti histamines should reduce it to some extent - so I went to the store got some over the counter hayfever tablets and some ibuprofen. Just taking normal small doses. Within 24 it had totally cleared up. I am currently working on my diet removing all inflammation causing elements - processed food, aspartame, coffee + alcohol :/ (i guess it has to be done) Its early days, but I feel like a million dollars. I'd like to try to help others who have it. The anti histamine was cetirizine hydrochloride. One a day, with one 200mg ibuprophen. Also take big doses of vitamin C twice a day.

[@jacquinewton8635]

@@ajdonnelly7160 hi AJ, thank you for your reply. I'll try this anti histamine you are recommending. The last two years have been difficult with CF I'll try anything to rid myself of it x to add.... Brain inflammation sounds about right, when I feel normal I'm quite intelegent (I think lol) when I'm CF I have the brain like the Scarecrow of Wizards of Oz

[@karlhans6678]

@@ajdonnelly7160 hi how are you feeling lately?

[@toby621]

me 25 years of hell cant take much more

[@jacquinewton8635]

@@karlhans6678 hey Karl I found something online that's really helped, I've been taking liquid form gut bacteria for the last two months. I'm awake again and ready to take over the world (again) 😝

[@kate8351]

I was diagnosed at 29 and now I'm 38 and it seems each day gets harder and harder and no one understands. I feel like a thousand bricks are holding me down and I'm constantly fighting to just have enough energy to walk to the bathroom or take a shower.

[@kevinvontscharner8980]

❤️❤️❤️ 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.

[@hhhh.g7766]

Wish so much luck to the researchers!! My life has ended too since my diagnosis! It’s horrific! And I’m sorry you are suffering too!

[@ryanmichelz94]

I'm in the same boat and I hate it. I'm just coming across this video and this diagnosis for the first time but I've been dealing with this illness and going to doctors for 4 years now. I've tried literally everything and nothing seems to work

[@vernateriyaki8031]

Me too. Just came back from the neurologist. Feels like nobody really believes you.

[@Mfield111]

Dont let all the Drs. Who doubt you take your sanity cause they will if you listen to them! They cant understand...but just know thousands of us DO...the first 5 yrs. Definitely the learning to accept period for me but every one different but now found on my 28th year..its becoming harder but could be because I have this disease and I'm old so that combination just Hard praying for all who are just gett5 and trying to luve with this cause its indescribable.....praying they listen and realize we need of research And desperate Help God bless you all and hold on....

[@SpiritualDivine]

This makes me so emotional. I'm the same way. Ever since I had meningitis for 2nd time I've gotten so much worse. Then covid in Dec. I can barely make it through the day :'( praying for a cure!

[@soulfire.]

You are the cure! Number 1. Do you eat sugar? 🙏✨

[@lb2229]

Thank you so much for your information and knowledge and enthusiasm about ME! I have had this disease my whole life and it’s not something I would Wish on my worst enemy! I have hope and dreams that I want to accomplish and get very depressed when I can’t live up to do things what normal people can do! I hv given up with many possibilities for the years I do have left concerning my age! I just take one day at a time and pray to God to allow me to meet people in my life that can understand and just be good friends Amen 🙏 Thank you again for all the doctors and researchers that try hard every day to search for a cure! ❤️🙏✝️

[@tatum5747]

Even after being diagnosed after 4 years, my doctor doesn’t take my CFS seriously. “Just get up. Just take a walk.” When I go shopping, my joints ache, I’m dizzy, my muscles are so tired. After that, I’m done for the whole next day. I’m 19, I’ve lost out on my teenage years. I will miss out on college, hanging out with friends, partying, so much more. I wish it was just as simple as to get up.

[@bill9923]

I am so sorry. I didn't get sick until my 30s. It's so unfair you got this so young.

[@lindakelley2676]

I empathize with young people who have this, it must be so devastating, pace yourself and hope new remedies will come in time, At 65 I don’t hold hope but you may live in a time where new discoveries and treatments will happen, good luck

[@brady8877]

I’m 17 and have it. It’s gotten so bad I can’t do school anymore, I used to get good marks and now I cant even go to school anymore. Completely ruined my life

[@tatum5747]

@@brady8877 I totally feel. I’m sorry and I know it sucks living like this. I’d never wish it on anyone. Something that’s contributing to how I feel is a glutathione deficiency. I’d totally recommend looking it up and getting tested for it. It’s just a blood test they take. I take glutathione powder and that has helped a little bit with my muscle aches and fatigue. I wish you the absolute best and hope you can find relief somehow ❤️

[@maiqueashworth]

I'm in a similar position to you. It's great that you're showing people what it's like. People just don't get it. At the moment I'm following CFS health with Toby Morrison, which is brilliant, and I feel I'm making some progress now.

[@robertobryan2485]

I got chronic fatigue at 24 and finally cured myself at 31 It's like I was so tired there was nearly 8 years of my life I didn't even remember now that I'm through it I appreciate life so much and love every moment 😀 . I was so close to suicide in that time I felt like I lost all my young life😭 because of it but now that I'm going forward I don't look back 😀

[@VardyMoss]

Hi what did you do to cure it

[@robertobryan2485]

Yes that is my fatigue was caused by low white blood cells. I use lithium to correct it and it cured me

[@cfs-genesung]

There is a reputable explanation for the cause of ME/CFS. Its a particular brain structure that has been traumatised in the beginning of the illness (that's not psychological). The brain goes into defence mode and triggers the immune system and a massive stimulation of the nervous system. Please have a look at the Gupta program for further information. I went from bedridden and in need of care to 100% health with that. Yes, it sounds unbelievable, but the explanation and the solution are already there

[@jacquinewton8635]

I'll check this gupta program out. I'm follow ayurvedic life style and that's helped and taken many herbal preparations like SAFI and Constitution bitters and they have done wonders for my health as I'm 50% better. Let's hope after I find this gupta on Google it'll be the key to unlocking CFS

[@Jimmylad.]

Can you please elaborate

[@douglasvancier7683]

@@Jimmylad. The Gupta program is, well they call it a brain retraining program. It's all psychological, nothing organic. It's like meditation to help cure stress, or to tell yourself you can heal, like positive thinking and imagery along with relaxing music. It does not really cure CFS but it can relax you and help you cope with symptoms. And you have to pay for this Gupta program. When I first got CFS or when I go through relapses (especially now with KZbin) I just search and play some meditative healing music to relax to and practice healing visualisation and think positive thoughts. I meditate and tell myself if other people have healed or recovered from CFS I can too, or send it into remission. That's basically what it is. You can do it for free and not pay for any program to people trying to take advantage of us monetarily. Here is a description from the Gupta website: This brain retraining program has inspiration drawn from many areas of coaching and therapy, including NLP, Meditation, Timeline Therapy, Breathwork, Parts therapy, Visualisation, Inner-Child work, and many more. We fit these tools under the banner of "Amygdala and Insula Retraining", or AIR Techniques. We suggest you sign up for the 28-Day free trial to get a feel for how it works, and whether this treatment is right for you. The whole program comes with a one-year money-back guarantee, that if you notice no improvement after 6 months of using the program, you get a refund, no questions asked. Therefore you have nothing to lose by giving the program a chance, and to start your journey towards health and happiness!

[@douglasvancier7683]

@@jacquinewton8635 It will not cure your CFS but it hay help you relax and cope with symptoms and give you positive dialog to tell yourself you will eventually feel better from it and send it into remission.

[@Jimmylad.]

Douglas Vancier thank you for spending the time to reply, so it’s essentially a mixture of mindfulness and positive thinking?

[@Hugatree1]

I so appreciate willingness to share their stories because most times I feel so guilty and isolated with this condition. I teach yoga several days a week and have other activities but literally need two or three days in between to recover. Even after twenty years of this on the good days I feel like I’m fully recovered and completely engaged in life and then the migraines pain and exhaustion come back again. I learn to thank God for the good days and keep hoping for a permanent resolution but we need to be grateful for what we have. Love blessings and peace to everyone! 🙏❤️🙏❤️

[@goertzpsychiatry9340]

kzbin.info/www/bejne/nZTMoHaggqqkqK8

[@philmartin7474]

This is me, Epstein Barr/CFS. i have very little quality of life, only a couple good hours or days each week and those are jam packed with miserable overwhelming past due chores. I wish there was a cure from this chronic sleepiness/fatigue.

[@lindakelley2676]

A car accident when I was 38 changed my life. I had just begun nursing school and I struggled through, working all week, crashing on weekends, I developed pneumonia/asthma and was sick for 8 months but determined to get my degree, which I did. After back and neck surgery I still declined and was beyond exhausted. Chronic pain consumed my life, effecting my relationships, work, parenting, every aspect of my life. I finally was forced to retire as a nurse. I stopped making plans, withdrew socially and bounced to pain clinics, opioids helped me function but 6 years ago, due to the “opioid crisis” drs. Stopped prescribing. There went my ability to function and many days are spent in bed, daydreaming about what it would be like to have energy and be healthy. I was diagnosed with overlapping pain syndrome and ME/CFS. I don’t talk about it and know I look “lazy”, My first grandson was born a year ago and I want to care for him more, but physically can’t. I so badly want to be the fun, peppy active grandma, and he inspires me to live, but I fear they will find no answers to this disease while I am alive, and I’m condemned to a torturous existence. , At 65 I feel 95, it’s hard to explain, it takes me a month to do what I used to do in a day. My mother had more energy than Me when she was dying and doing chemotherapy. I can’t imagine how young mothers do it. It’s a fatigue you can’t push yourself through. Life without energy isn’t living, it’s a slow death. It only gets worse. I now have contempt for my dr, who keeps telling me to exercise, doesn’t put ME on my problem list (I think he doubts it) refuses to prescribe pain meds and tells me there’s nothing he can do to help me. In this day and age it’s draconian to leave people suffer so. My nights are wracked with leg pain and after 3 or so sleepless nights I’m deranged from sleep deprivation, I hop from bed to hot baths, slather muscle creams, arnica all over, use a tens unit, and heating pads. It’s like a bandaid on gangrene.

[@alinchen1140]

I feel so sorry for you. The only thing that helped me a little bit was high dosage vitamin c. Maybe thats something you could try?

[@lindakelley2676]

@@alinchen1140 I’m certainly open to any suggestions of things that worked for people, I’m using probiotics and immune boosters, I do have powdered C, I’ll add that and see if I feel any change, I had 3 functional, productive days this past month, which is inspiring, but also discouraging, as it gives the contrast of where I’d like to be, it’s harder to adapt to the chronic fatigue than having pain, thank you for your kindness.

[@chizobauchay2024]

You are not alone darling,l too have endured it for 14 yrs, don't think big what you have lost,think of what you still have.

[@somethingbronzie]

Appreciate you sharing your story so very much. I have 3 little kids. Things are worsening pretty fast now. Tired of trying to explain to people 'why i can't'. 27 is so significant! I can trace the start of my journey back to 27 too. May the Good Lord bless you and your family and may you find a new way to live, not just exist

[@Chess-ks8lk]

Back in 2004 I diagnosed myself with CFS. Doctors didnt take me seriously. They thought I was making things up. 16 years later not much has changed. Today I spent the whole day in bed sleeping. I could sleep 16 hours a day and I am still tired. Hopefully I dont experience pain. I am just fatigued/tired/have no energy.

[@annatomlinson1529]

look into mold toxicity, Lyme disease and parasites if you can. A good naturopath or functional medicine practitioner can help. I had debiliating CFS symptoms and turns out it was mold toxicity. There is usually a reason this happens -- your body is smart! Don't give up; you can heal. It's often complex and takes a long time, but our bodies are amazing. Highly recommend the book "Toxic" by Dr. Neil Nathan; I've also learned a ton from vivanaturalhealth's podcast. And Cellcore has an innovative line of supplements that people are having great results with!

[@Chess-ks8lk]

@@annatomlinson1529 the cause of my cfs is prolonged abuse and childhood trauma

[@annatomlinson1529]

@@Chess-ks8lk Ah, I'm sorry to hear that. I've read trauma can be a root cause for cfs too. Still possible to heal!

[@Chess-ks8lk]

@@annatomlinson1529 how?

[@annatomlinson1529]

@@Chess-ks8lk I'm not an expert but what I've heard naturopaths talk about are things like EMDR therapy, breathwork, neural retraining, and activating the parasympathetic system and vagus nerve (getting out of "flight or fight"). I've done a bit of that. Also looking at things like gut health and hormones, because those can be very impacted by emotional stress and can stop producing enough serotonin etc and effect how we feel physically and mentally. Happy to talk more if you have questions!

[@Angel-tv5lq]

I feel your pain, I really do. Ppl see you and think your absolutely fine, but what they don’t realize is that the majority of times that they don’t see you, isn’t because they ‘missed you in the local shop etc’, but were all the times you couldn’t even get dressed to leave the house, never mind go to the shop. I have suffered from this - as a secondary condition - since the age of 12 years old. I was a competitive (junior) athlete and heading for the training which takes you on to compete in the Olympics but I had to stop due to exhaustion and breathing issues. I have so many symptoms that the medical profession do not know what to do with me so they’ve given up....particularly since I went from a size u.k 10 all my life and I’m now a size 16. It looks like water retention but if you touch it you would think I’m a body builder as there is only a thin ‘soft’ layer of fat and whatever the other part is (ie fat/fluid), has the appearance of cellulite - which I’ve never really suffered from - well a small amount which I’m told is only detectable by me (🙄 of course). Tightness makes me feel like my skin is going to split but my G.P has never seen anything like it before 🤷🏼‍♀️ The scariest thing which I feel ppl need to know, is that I have had sepsis 5times and severe sepsis (which inc 2+ organ failure & more symptoms) and I nearly passed from it, I was given a 50/50 chance of survival and that was prior to the Op, the hard part is the recovery process. The reason I mention this is because I didn’t have clue that I was a walking on borrowed time, because ALL of the symptoms were those that are very common for Chronic Fatigue so please, if you start waking in the night feeling & then being physically sick, or the drowsiness gets even marginally worse, your legs feel shaky if you try to work, your anxiety/stress levels...(possibly adrenaline feels high)....feel worse and you feel feverish or clammy, even if you check and you don’t have a fever - so just under what would constitute a fever and more importantly when your temp is below 36.....then it would be worth going and getting a blood test because i had 2 Ops for severe Sepsis in the space of 3days and apparently you do not need to have cut yourself for an infection to get in to the body. What I will say is that 1 of the various conditions I have is SLE (Lupus), so I’m not sure if ppl with SLE are more at risk, I really don’t know. It’s better to be safe than sorry as much as it is very scary. I have 4 children and other family yet none of them knew I was in hospital having a life saving Op. I hadn’t even had chance to speak to anyone and I also went in to sceptic shock after the 1st Op, but i didn’t know until approx 5days later - so no matter what life hits you with, ALWAYS THINK POSITIVE. Not once did I ever think I was going to die, so state of mind is a very strong tool in life.

[@jessebautista4636]

blythe angel I come across your post in the you tube CFS/ME I AM SENDING THIS MESSAGE TO YOU SO THAT I T CAN HELP or it might help you. YOUMIGHT FIND THIS CLAIM ABSURD OR NON SENSE but cfs is caused by class 2 malocclusion that compresed and displace your brain stem and limbic sytem that is the reason why so many underlying medical symptoms like panic anxiety attack hormonal imbalanced particularly cortisol is always elevated migraine sleeping disrorder insomnia POTS , GERD (gastro esophageal reflux disease) vertigo frozen shoulder stabbing pain in the lumbar area hip pain hypertension, facial pain scoliosis lordosis ankylosing spondiolosis epilepsy thats to name a few symptoms thats 1st the second reason why you developed auto immune disease is that when you have this severe malocclusion it also affect your breathin resultin in andequate oxygenation of your entire body it means your body is being deprived of oxygen what happens if theres not enough oxygen to go around your body your production of ATP IS NOT ENOUGH TO POWER YOUR ENTIRE BODY thats why those people suffering from CFS/ME feels like low battery always so what is ATP its the energy currency of the body its like equivalent to moneylets say for example that you want ot build a house you need amoney to buy thing to start and finish the house in patient with cfs its like not enough money to finish the house completely so in time the house become run down thats what happen to you so what is the function of ATP YOU RESEARCH ON THESE ATP IS NEEDED FOR intracellular signaling, dna and rna synthesis, purinergic signaling, synaptic signaling , active transport and muscle contraction , if you know what i am telling you you will understand why you have auto immune disease. so lots of information that i have given you but lets do some experiment if you are open minded and ready to try new treatment this is the one you should try this proove that my treatment works " get a cotton roll place the cotton roll over your lower premolars and molars then close your teeth this will increased your bite the proper height should be the tip of your upper incisors teeth should be touchin to the tip of your lower incisors. then do a standing slow deep breathing for 20 to 30 minutes then slowly walk and you be amazed by the result do this for a whole day with the cotton roll inside your mouth for a whole day do long walk with your cotton inside your mouth dont remove it when you do the long walk and let me know if you tried it and how it goes maybe we can talk about real treatment its just an experiment to proove to you the treatment is real

[@mrskamran]

So relatable! I have CFS along with my AS. Someday if you were so tired you can barely breathe. Thank you for sharing your story, I hope the medical community can find a solution soon. It sucks just drifting along some days. Thankful for the good days!

[@wesporter2176]

I suffered from it for a long time too but after I had post concussion syndrome (mostly tinnitus, headaches & anxiety) for a head injury I tried upper cervical care and was surprised that it worked great for both issues! If your C1 neck bone is out of position it can cause a lot of symptoms because it is interfering with the spinal cord. Something to look at if you tried everything else like me.

[@lisadickson4492]

I've been like this for the last 8 yrs with fibromyalgia Im getting worst, I feel like a zombie 24/7, I just wish my doctor would listen to me and stop blaming everything on fibromyalgia. I slowly feel like my life is slipping away, if I need to go out for a occasion it takes for forever to get ready n just for about 2-3 hrs max. This alone lands me in bed for 3-4 days 😭 I'm on 40 but feel like I'm trapped in a 70yrs body Sending hugs to all suffering ❤️

[@Green-rp6br]

Im so sick of dealing with this, im in my 20s and my whole life has been taken from me

[@garysullivan8567]

How are you doing Shannon? I have CFS and understand what you are going through. I can tell you that I have limitations but I am much better than I was when it 1st started. Cycling really helps me a lot and it seems to give me a boost at least for a day. I hope you are feeling better, don't give up hope. Try to do things that make you happy and exercise in gradual increments, also consider less medications because some meds make your body worse instead of better...these are just some ideas for you to consider...I hope you are better

[@kerinicole8]

I was diagnosed when I was 11 years old. I'm almost 39. I've had to learn to live in silence since w/this w/o direction since 1994 until I met a doctor willing to help me function by prescribing me unique medications not recognized as formal cfs medication circa 2003. I barely knew anything more than my energy was unlike others . That was the extent of my knowledge at that time I was unaware of how much everything else I was going thru intertwined. I didnt know how to get better. Since getting this regimen I stopped going to regular doctors for the most part several years ago circa 2008 unless absolutely medically neccesary. I still see the same doctor though who has given me the ability to function normally and I'm scared of the day he no longer can prescribe what makes me human again. People look at me with such disgust I feel. For me, This medicine combination was able to enable me to function as a normal human being. I was able to finish college and have a healthy career for a decent time, apps 12 years of a career. Dont get me wrong, I struggle but had to in silence because since I was young, noone understood CFS, later someone else diagnosed me with Fibromyalgia which I hear can be typical and almost the same which I find hard to completely understand. My main large obstacle has always been fatigue, horrible massive amounts of fatigue that never stops. It only stops when I have a good day at random AND IN CONJUNCTION WITH meds I've been taking for 17 years. My personal saving grace medication I suggest you ask your doctor about will be controversial still but should not be. I also suffer from anxiety and depression and after finding my brother who shot himself, PTSD. I feel lucky I got a doctor who knew how to help change my life. Without who I wouldn't have a family, husband, or children. I consider myself very lucky. Ask your doctor about long acting stimulants such as concerta or nowadays Vyvanse. This drug coupled with the neccesary medications that fit your unique self, this is not to say you should ever take these meds without being under the care of a physician. When used in conjunction with occasional and only when neccesary medication to control panick disorders, my ocd and depression and my pain I have been afforded the opportunity to live. I tried anti narcolepsy meds, ugh so many things doctors tried on me but for me what worked was a hefty dosage of delayed response medication that slowly disperses throughout the body acting to follow the name "long acting " for me my dose of vyvanse I've been taking since 2007/2008 with the use of one or two 30 mg instant release help to get me out of bed. When the medicine kicks in after about 1 hrs which never has gotten quicker or longer nor have I ever grown tolerant of the medication and it not worked but once out of bed, I feel human and normal. It's amazing. Without vyvanse I am for most part bed ridden. It's the scariest thing to have 2 kids and even with meds I still have many many days where I'm just in bed. No one gets it. It's horrible. I feel like the majority of days with meds are good days though. Especially once I get up and moving and have something to help ease joint and muscle pain as well as deep tissue issues left over from car accidents and being bed stricken. If I'm lucky enough to have both to get me thru, that's how I've stayed in tact. I dont abuse the medicine although anyone at Walgreens will take one look at your line up and one pharmacist actually said, "quite the cocktail you have" I was disgusted. She acted as if I had a choice to be miserable or to be functional. As if I was given the choice I wouldn't choose no medication over being healthy and happy. How disgusting that mind frame can be, how toxic and quick it will spread. I know that keeps me ashamed. Dont stop until you meet a doctor who values your quality of life. It changed mine I have no question.

[@douglasvancier7683]

Glad you're finding somewhat relief. I got it in the late 80's, was bad for 2 years straight then I gradually got better. Then every 2 or 3 years I would have relapses that last about 3 months each. I am having a relapse now and it's been like 8 years since my last relapse this bad. You think you are completely over it then it creeps up again as a reminder. My main symptoms are very fatigued, headaches, slight cognitive issues, anxiety, some joint pain. I know from experience I will pull through it again and I guess I am fortunate because some people seem to never get over it. I hope you continue to feel better. I just completed courses on selling life and health insurance and with my certificate I can get a state license temporarily for 6 months without having to take the state exam because of Covid-19. Looking forward to starting a new job with it, but now I have to wait a month or two to get over this relapse where I will feel healthy and confident enough to start my new endeavor. It sucks but I have to wait it out. Such is life. Thanks for letting me vent. Take care!

[@Froggy77100]

I too feel like I died at 27 too, I just turned 45 in November. After finally being diagnosed, I realized I had likely unknowingly had ME all my life. I was often sick as a child with many ailments. I got ear inflections so severe & so frequently. They had to surgically insert tubes. I've been having periods of being ill with what I believe was the ME since my early teens. I also have been getting chronic kidney stone blockages requiring surgical intervention beginning at 19 that reoccurred every 1-2 years. I had thought my symptoms were from recovering from that, although it did likely contribute as I've learned everything does. I'd also got begin having UTI's as a child & kidney infections began in my late teens. Also had severe EBV at 18 & a list of other health issues. I was resilient as a child as I never had so many days ill that I don't recall feeling it was anything that wouldn't get better. I was able to feel close to fully recovered after periods of a few months, with the longest time I was close to being bedridden was roughly 18 months. It was affecting my ability to work & care for my daughter. Her grandpa would take her & pick her up because I was physically not able to get up. I just felt like my body was giving out & wouldn't be able stay awake no matter what I tried. (I'll have to try & continue later cannot focus any longer)

[@ThomasEM]

I just watched a video on spinal fluid leaks and the symptoms described at the start of the video perfectly match the symptoms of a spinal fluid leak.

[@whitterbug]

I COMPLETELY understand you.💖 Dr. Bateman is my doctor, and I am grateful that this disease is being taken seriously.

[@someoneusa]

Any success? Haven't found a doctor yet after 22 years that takes it seriously.

[@whitterbug]

@@someoneusa Yes, I am doing MUCH better and have been in remission for quite some time. Vegan diet, making sure I get all of my nutrients, VERY limited exercise, and keeping my POTS at bay. I use a wheelchair when I absolutely need, and keep my sodium up.

[@mdee860]

@@whitterbug- interesting, I need to keep a close eye on my sodium, too. Good for you.

[@TerrieCornia]

I haven't been able to be seen yet for this condition.... I'm a widow and I have been trying though these last days,, actuality YEARS ..N I HAD A INFECTION AND THAT'S WHAT STARTED MY CONDITION TO RECOGNIZE THROUGH MY SYMPTOMS CRIPTO AND IT LAID DOORMEN FOR OVER A YEAR .... IT WAS THE BEGINNING OF THE END. AND I'M JUST GRATEFUL !! MORE THAN I CAN SAY.. I HAVE BEEN DIBILITATING FOR YEARS NOW ...2009 WAS THE YEAR OF MY DOWN HILL SPIRAL THAT HAS LED ME TO ISOLATION BECAUSE OF MY HEALTH N LOSING THE ONE PERSON THAT KNEW ME WELL MY MOTHER..I LOST MY MOM AND SINCE IT'S BEEN HE'LL.. THANK GOD FOR HE'S LOVE ... I'M SO SORRY FOR THIS CONDITION. I'M SORRY FOR ALL YOU GUYS TO.. I'M WITH YOU I HOPE I CAN SOMEHOW GET THE HELP I NEED... AND IT'S A BLESSING TO KNOW THERRE IS HELP!!!! THANK YOU FOR SHARING..

[@opedromagico]

Sick since 2016.. Cutting gluten and dairy helped, carnivore diet helped a lot but 5 months after it got bad again.. Trying the COIMBRA protocol (high doses of vitamin d), was taking 100.000ui a day and after 5 days it seems my constipation got really bad so I'm taking 50.000ui now.. Hope it works. I can't work, exercise, socialize or even read a book, I'm mostly bedridden all day. And to think I used to be hired to cheer up parties as a magician, practiced parkour on top of buildings and worked all day no problem.. This condition kills you but still lets you live here. Why?

[@MohamedHassan-cm8ni]

Take valacyclovir 1g every 12 hours for at least 6 month .

[@MohamedHassan-cm8ni]

Take valacyclovir 1g every 12 hours for at least 6 month .

[@m.e.myselfandi5120]

My family try to understand but since I'm half fruit bat on a normal day I guess it's tough! It got real when my teenage son got sick. Thank God I had been on the road and could get him back to health within a few months. That is my reward for 18 years of spectating my broken body. And the vigour of getting him right helped me improve my own health too.

[@jessiej5765]

Omg I deal with everything u said, makes me really sad The fear of driving, getting dizzy when taking a bath literally everything you said I can't take the stairs, run, exercise, any physical activity, carrying boxes, standing for a long time in waiting lines or when cooking in the kitchen I have been dealing with this all my life since childhood and I'm sick of it

[@queenofthebutterflies5212]

Sending you a hug darling. It is so bad, isn't it? Evil, evil condition. My fingers hurt from typing!!

[@jessiej5765]

@@queenofthebutterflies5212 Thank you so much ❤❤❤❤ sending you love too🌹

[@q.m17]

me too

[@philmartin7474]

Ive been suffering severely with this for decades, my life is destroyed and in shambles. I have no life. My doctors have not been much help at all.

[@anythinggoes5574]

Hi Phil. Sorry to hear that man. Was wondering how old you were when it started and if you had any odd symptoms related to your neck? Any grinding and clicking, odd sensations, neurological symptoms? I noticed a correlation which seems to be like instability in my neck.

[@philmartin7474]

@@anythinggoes5574 I got EBV in 1989 and it was real bad, but being young i overcame it most if the year, but 2 -3 times a year i would have a flare up that would bedbound me 2-3 weeks each... Now its like im a prisoner to bed... I would be lucky if i could add up all my good days throughout a year and it equal 2-3 weeks, thats how bad it is. I dont recall any neck issues from what i remember, that sounds very unique as far as symptoms i have thus heard others discuss. I wish you full healing though. I started taking more Vitamin D3 recently and thought i feel a tiny bit improvement somedays. Im still exploring. Theres a Doctor Bill Rawls in NC, who healed himself of Lymes which has similar cellular damage, but his vitamin kits are about $270.00 per month.... and honestly i dont know anyone whose as debilitated as i am that can afford that monthly price and if it actually works.

[@juliemaxwell6902]

30 plus yrs and has only have gotten worse! This video really hit home! Feel like I've been over looked😢 It's really no way to live...

[@Mfield111]

Me too julie 30 yrs.. no one but us that have this can ever understand God help us

[@susank.6296]

I feel like I died when I was 33 and I’m 51 now and cant help but feel like I’ve wasted away the best years of my life. I’ve been diagnosed with chronic fatigue and fibromyalgia...how do I get tested for Myalgic Encephalomyelitis? Working from home during this covid19 pandemic only convinces me more that something is really wrong with me...

[@MP-uo6qd]

There is no specific test but if you had a viral infection which made you then have fatigue and cognitive dysfunction, then it is likely you have CFS. Check this out phoenixrising.me/treating-cfs-chronic-fatigue-syndrome-me/treatment-protocols/dr-paul-cheney

[@RickyHarline]

Myalgic Encephalomyelitis is chronic fatigue. It's often called ME/CFS. It's the same diagnosis.

[@nopretribrapture2318]

Same here just existing sick of living and scared of dying even though i hope in Jesus Christ as my ONLY HOPE

[@douglasvancier7683]

@@michellsoto6381 That doesn't work bitch. Quit promoting your damn book on here!!

[@douglasvancier7683]

Try the Hunter-Hopkins Center with Dr. Lapp in Charlotte, NC. They specialize only in CFS or can refer to a doctor in your community. drlapp.com Google it or use the link. They understand it and have a phenomenal detailed questionnaire about symptoms, etc.

[@FrOgFrIeND753]

Life feels like it's over for me, but seeing this gives me hope xx

[@3rdeye399]

I have had ME/CFS for around 18 years and my heart goes out to all sufferers out there. My symptoms have greatly effected my quality of life but I know most have suffered worse than me. Almost immediately I felt my condition was not being properly diagnosed and doctors were not asking the right questions. I was continually tired, I found it difficult to think, my work became stressful and was causing me anxiety, I had aches and pains that would flit around my body and much more. Through frustration with the NHS I decided to research what the hell was causing my health to be this way. It took me a while because my mental capabilities were very low, but over a few years I started to notice patterns of information that directed me to my current understandings. I will now tell you something that few will ever tell you but is my honest interpretation and sincere viewpoint. It is counter to all you have been taught but if you open up your mind there is a connectivity that leads to a dark reality hidden in plain view. My first connection was realising that Gulf War soldiers that were given a Cocktail of Vaccines suffered many side effects and thousands were ill... this was called Gulf War Syndrome. I then remembered that not long before I became ill I too had been given A Flu and Hep B vaccine. However I still trusted the Health System and could not imagine that they would give me something that was not tested properly. I found that very little research was being done to find the cause of CFS or ME which raised red flags for me. I was also finding claims of Vaccines causing Autism but all health organisations were saying them was no proof to suggest this... none of this was making any sense... why would they intentionally feed dangerous vaccines to us and NO Doctors were coming forward with their concerns???? Some time later and because I was looking into Vaccines I started to get Conspiracy videos being suggested to watch... one caught my eye, I watched it and I fell into the Rabbit hole... because of my experience and knowledge I happened to watch a video that within seconds it blew my concepts of reality to smithereens and that was the last piece of the puzzle I needed... I had the weapon, I had the WHO and lastly the motive. I had not seen this coming and it shocked me to the core. So on top of my CFS I now have this added Mammoth around my neck. I now believe that vaccines cause many complications and goes beyond CFS,ME and Autism.... when you look at the characteristics of these three they will differ greatly from each sufferer, with differing symptoms and severity but they are all related the the nervous system and to the functions and control systems of the brain. Now look at other similar conditions such as MS and Fibromyalgia and I highly suspect many others too are linked to Vaccines. Do your own research and also check out personal cases at " Vaxxed " on youtube.

[@Mfield111]

I have this illness long b4 I ever had a flu shot or vax of any kind I got it after being sick then hep. A stayed in my blood stream for a year.. not the usual 3 to 6 weeks I've been so so sick never getting better so hope you can get better I've been here for 27yrs... and not one bit better if anything worse in my 63yrs of life...now my heart has probably not many beats left since all these years tacking so fast it will probably wear out soon hoping for more understanding g and cure for this life stealing illness

[@3rdeye399]

@@Mfield111 Hi Amy, my heart goes out to you and all others that suffer in virtual silence. It is good to get your feedback as it always adds information to what I know. The reasons I gave for my case are not the full picture and will change from individual to individual and will depend on your history from birth. Everyone will have a different outcome and that is why many have no reactions at all, however as time goes on they will be effected in various other manners that will get worsen through time and not surface as ME/CFS but as alternative Conditions. To be truthful there is no Cure and because the powers that be have created this monster to destroy lives and because there is Gold at the end of their rainbow... a cure would stop that....

[@Mfield111]

Thank you for your kind gentle words they are appreciated yea I know way to much how this illness can affect each of us in many different...symptoms but, I believe we all suffer in more ways than not..you are so right!! Cause b4 hep A several years b4 I continually had a flu type illness that came every time I pushed to accomplish tasks beyond my ability.. and I was in my 20,s all regular symptoms of flu sore throat, chills aches headaches typical flu and fatigue... then the tachycardia ....bladder and bowel trouble...Many many symptoms that even I believe I was crazy...No one in family or friends has ever believe there could be a illness with all these symptoms had to be crazy...if I could do one thing to help all out there who suffer from this CFIDS this was the name I was given for it in 1995.. it would be to give them the access to have people Understand how Hard and invisible We ,They feel Thank you for what you are doing thank you I have nothing left to give I'm past tired but you still have hope for you and others may God bless you and may the medical community.....get it out cause it needs a Voice!!

[@KittenCasserole]

Great video, thanks for sharing ❤️

[@bgreene2347]

I have been dealing with this for 15 years and can't seem to find any Dr to help. I would love to hear what has helped some of you.

[@angelfreedom911]

I overcome my chronic fatigue when I have been diagnosed with Celiac disease, Hypothyroidism, Ibs and unfortunately most severe ones. I wish you all the best my darling .

[@someoneusa]

I got CFS after a virus that nearly killed me when I was 28. Will be 50 this year. Don't have anything to add outside of everything that has already been said. Preaching to the choir. Have tried everything I've heard of so far. My diet is as good as it gets.

[@LuxMeow]

I have CFS which started at age 22 and I had no idea what was happening to me. It wasn't until many yrs later I was diagnosed but the treatment you get is non existent. Medical 'professionals' can be quite dismissive, condescending, mocking. I was told it was because I had no children by one 'expert' chronic fatigue doctor. Yes a Dr in a chronic fatigue program told me this. This program which I had to wait years for. It hasn't helped me at all as they expect you not to have CFS while participating. Well now I am a mom and it never went away. It's worse than ever. People's behaviors and beliefs surrounding this are incredibly disappointing but detrimental to our well being. A lot of life wasted. It's like you died yet are still around to watch life go on. When I have no energy to do anything I literally chew coffee beans because making a cup is out of the question. Then I hope to hell that's enough to keep my brain from shutting down/off. It seems to be related to the nervous system, stress and possible trauma/s as before it happened to me. The immune system attacks the nervous system including the brain and maybe causing inflammation in many areas in parts of the body which effect functioning from what I experience. I mean we know it can happen. There is a woman living without a nose because her immune system attacked itself. Most of us are trapped at home trying to recover from what feels like a constant body flu of the worst kind. It's astonishing it's gone on this long and effects so many yet there is so much ignorance. I have known two people with terminal cancer you would NEVER know it by looking at them. One has since passed in 2020 but she had more energy than me. Likely with all the drugs she was on. She worked and I seen her everyday as we hung out and she lived next door to me. So looks can be deceiving when it comes to illness. I wish people were less judgemental on something they know nothing about. Why I avoid people as much as I can. It's a cruel illness but mostly because how people behave in addition to what you already survive.

[@mypuritanicalopinion3332]

My calendars are full of numbers, what my energy percentage is for a given day. What we do is so similar. And I put X marks for little projects completed in order to encourage myself.

[@oscarmoreno2497]

When people are screwed they're screwed and I know about that. Trying to stay positive through some of these struggles doesn't change your pain or illness. You go see your Dr about extreme anxiety, depression or an illness like chronic fatigue syndrome and after your appointment you go home feeling exactly the same or maybe Dr gives us meds that make us feel worse or that have terrible side effects. When people commit suicide because they prefer to be dead than to keep dealing with hell on earth others are quick to judge and call the person that commits suicide selfish and a coward. It's easy to judge when we are not in the other person's shoes. The only way to really know how much someone else suffers is to be inside their brain and body 24/7.

[@samcheng7542]

I am 48, female, a long history of cramping and diarrhea.plus my husband having IBS for a years,However I was able to control both with Imodium until January. I have been in severe pain since middle of January and have lost 20 pounds. The pain has progressively gotten worse. It started as a “bladder infection” pain, but all urinary tests came up negative. I even had a CT and ultrasound done. I then had a colonoscopy and upper endoscopy done which the results are most likely Crohn’s disease and CFS but I’m waiting for blood test results to confirm, the Prometheus test was done. However I am still in a lot of pain, I have pressure also, all of it right above my bladder. The pain is as bad as my childbirth labor was. I have had a total hysterectomy, appendectomy, gall bladder removed also. Also, I have this weird sensation of a string pulling through my genitals. That’s the best way to describe it, but it kind of feels like a nerve or tendons being pulled. There is also throbbing in my abdomen and genitals. I have also been to my gynecologist, nothing abnormal shown as I figured with my hysterectomy. I believe I am at least gluten intolerant, but tests show I am on borderline of celiac disease. I have been trying to correlate the pain with something and I noticed as my bladder fills up, the pain increases. But here’s probably the biggest clue, when doing the prep for my colonoscopy, as soon as my bowels were clear, I had no pain, not even when my bladder filled up. I didn’t start hurting again until hours after eating again the following day when my bowels filled up again. Also, I noticed that when I take Imodium for diarrhea I hurt more, probably because the stool is sitting in there instead of going right then. i was then introduced to a chinese herbalist Dr sale bashiru i got the herbs and oil a long with my husband IBS. just about 3 months past without pains and symptoms and my husband fully cured also.here is my email. [e-mail] whatsapp [phone]

[@judahhirsch4403]

I have cfs, but i definitely feel that my attitude can change how tired I am. There is a mental aspect to the disease, in my opinion. I have never been able to completely get rid of the fatigue, but having something to do and look forward to every day definitely gives me more energy. I wish i had more energy and wasnt tired at all but I do find that the way i think about things can change the way I feel. Do not give up and tell yourself it is incurable. That kind of thinking is toxic!

[@angelatoohey8754]

I had a bunch on Vaccines to go to INdia in 1996. By 1999 I couldnt work anymore in my profession of Musical Theatre Actress. I was at the peak of my career. I did a few more short shows with long periods off in between. I now perform my own music and have 2 CDs but still can't manage to do the 8 shows a week in theatre. I was diagnosed with CFS in 1999 but more correctly diagnosed with mercury poisoning and toxic poisoning from vaccines in 2009. About 18 mths ago I removed LECTINS (DR Gundry) from my diet which immediately stopped my weekly migraines!!! Wow. I have been detoxing for maybe 15 years, so am much better. I am about to do the MMS protocol and am taking ASEA for my gut. I think healing the gut and detoxing heavy metals and viruses is key. All the best everyone!

[@freiagalacar3465]

I know exactly how you feel, I really do.

[@doloresleyva8810]

I truly believe this is a symptom of stress /major depressive disorder. I believe its the physical side of mental depression where the body is just tired , just as tired as the mind is so the mind shuts down and then leads to the body not wanting to function like it should. Theres a point where the body cant take anymore chemical shock of the immune response to whatever it is that triggered the overwhelming symptoms. . I also think biofilm has alot to do with this disorder. Biofilms can coat nerves and hinder the responses of nerves in chronic conditions. This disorder is like a dimmer switch on a light bulb that is permanently set at half way.

[@riyavashishtha5228]

CAC Stress care tab contains Brahmi (Bacopa monnieri), Sarpgandha (Rauwolfia serpentina), Jatamansi (Nardostachys jatamansi). Stress care tab acts as a brain tonic. It also acts on anxiety, depression . It calms down the brain and thus relieves the stress.

[@Tluv_1955]

I suffered r with chronic fatigue for a couple of years and I’ve gotten a lot better I did a couple of liver flushes and got on some good herbs and went gluten free and cut down on carbs and sugary drinks , and praying to God had helped me alot !!!

[@lostforever773]

Yeah no

[@KB-sv7fm]

You may not have cut down on the right foods. I had a problem with the Corn Protein (High Fructose Corn Syrup , Corn Starch) and Dairy Products. Could you have a problem with the additives in Processed Foods ? Talk to a Doctor in Integrative Medicine. Many major universities an Integrative Medicine Department (Johns Hopkins , Duke University , University of Arizona).

[@Agi1969]

I had a very bad bout of viral infection that lasted for 4 months coming and going with less and less intensity. 39.6 C fever at the acute phase, body pain, chest pain, sore throat. Chest pain was so severe I thought I had a heart attack. Took 2 years to get diagnosed with CFS. I would “crash out” by the week end. Doctors kept saying you have 3 kids its normal you are tired. I had to leave my PhD in psychology. I got every viral infection going for years. I fell pregnant at 44 and had my 4th child, my a beautiful son. Since the pregnancy the body pain is much worse. I also have now arthritis. This illness robbed me of my life, literally. It ruined everything. I often feel suicidal and think my husband and kids would be better off without me. I am not useful to anyone. Just a shell.

[@wesporter2176]

I suffered from it for a long time too but after I had post concussion syndrome (mostly tinnitus, headaches & anxiety) for a head injury I tried upper cervical care and was surprised that it worked great for both issues! If your C1 neck bone is out of position it can cause a lot of symptoms because it is interfering with the spinal cord. Something to look at if you tried everything else like me.

[@firasqassas6078]

Hello wes, im dealing with the same thing right now the tinnitus, anxiety and head pressure along with the chronic fatigue since 2014. I didnt have a concussion but i do feel that my neck bothers me. Do you mind sharing somethings that might help. Thx

[@wesporter2176]

@@firasqassas6078 I'd try to find an upper cervical care place I did atlas orthogonal they use instruments to adjust your atlas and you barely feel a thing. Also try to eat clean avoid too much oil, fat & sugar... it's not easy but it's worth not having these issues.

[@lelediamondASMR]

Had mine four years I got all this too wrecks your life people don't get it.

[@KarenRobins1]

Excellent video. Thank you.

[@shannonmckenney5977]

Thank You for the kind words

[@karenwallace5855]

Ten days into eating whole food plant based diet of vegetables, fruit, whole wheat and beans. Eating some eggs, butter, mayo, olive oil and coconut oil. Had small amount of meat only twice. Limited myself to low to no processed food, low sugar, low sodium, low carbs, low omega 6, low meat. Drinking water only, purified atm. Been taking pico ionic magnesium and using transdermal magnesium oil several times a day. Fasting overnight at least 12 hours. Worst of my inflammatory muscle pain subsided within six days. Brain fog and fatigue lifted. Sleeping better and waking up rested. Able to function at higher level and not have to lie down during the day. Muscles less stiff and sore and achiness is gone. Magnesium helps the body to detox so it can cause some kidney discomfort and cause irritability at first as the processes that utilize the magnesium wake up. Magnesium helps to relax the tense tight muscles and helps to relax and fall asleep. Less headaches and less insomnia. My body always felt wired, now it feels more calm. CFS and fibro have robbed 9 years of my life. I had to stop working because my body could no longer handle it. I hope that this protocol will continue to help me get better. Maybe this will help someone else, too. I looked into the gut microbiome connection to inflammation and think there is something to that. Also, many of the symptoms of magnesium deficiency are the same as the symptoms of those who suffer from CFS and fibro.

[@MikeStrip]

Such a great video. It’s really hard because a social life can be difficult and people have trouble understanding what it feels like to experience this firsthand. So many doctors refuse to diagnose ME/CFS as well and that can be frustrating. One common factor I’ve seen is that many have had glandular fever or childhood Epstein-Barr. The orthostatic intolerance I’ve had many episodes while other people I know have had more migraines etc.

[@MarkMc03]

I was just six years into my career of passion, acting, after 12 years of practising law. And then I got sick. I struggled hand to mouth to continue to work. I lasted 12 years. Total disability now last five years. I'm just so sad.

[@jussehwagner3166]

What a mysterious disease. And it only seems to affect woman with a strong support system. Fascinating

[@lessons9745]

The breathing problems are the worst. The migraines, the pain, weakness, brain fog, poor temp control, tinnitus. The list goes on and on. 8 years of it.. And my son now has it too.

[@originalsongsbyadam2883]

Shannon, hang in there. You are going to get your life back. One day at a time, step by step, you are going to get there. Believe in your body, however counter-intuitive that seems. Believe also for the sake of your mind and your spirit. Body and mind are one. CFS, on a very basic level, is PTSD of the body, in which normal stimuli act as disproportionate triggers. As an out of the box tip, work on healing PTSD, even if you don't believe it applies - and before there are any questions as to my belief of CFS being physical, I have had this for 13.5yrs and am close to being healed, so please don't mistake the PTSD comment as one of the well-meaning but ignorant onlookers thinking this is psychological (I've dealt with that myself). Also in regards to the PTSD/CFS (mind-body) connection, you made an interesting comment at the end of the video. You said you were not angry, but were instead sad, and felt loss. In lots of cases(but not all), sadness and depression are anger turned inward. The anger may still be underneath, and repressed emotions seem to be coming to light as massive catalysts for illness, whether that be the onset of them, or the way they seem to hang around. I didn't believe that during the majority of my recovery, but am finding out now how much I had repressed and how much it perpetuated the condition(and in my case, led up to it). If you can, purge your thoughts and feelings on paper, computer or voice recording. Once you do that, then try to meditate and rest and calm the mind while it is still. Then just give it time. Don't push too hard with the emotional work either. Just be gentle and let it come out a few minutes at a time. As the brain and nervous system calm enough for symptoms to begin fading, the immune system will gradually fall back in line in tandem. Life is going to come back. It is just a few more steps away and around a couple of corners. You can't see it from where you are standing, but it is there. When you start feeling better, only do 20-50% of what you think you are able to, especially on your good days. Your energy is currency. Your good days are when you get your paycheck. Don't live paycheck to paycheck, or worse, spending everything on payday and the day after. Create a savings account. The more you are in poverty(aka energy deficit), the less the interest feels to be adding up, but things do compound over time. Having $100 at ten percent interest only earns you ten more dollars - but over time, $1M earns you $100k. So while the interest is slow at first, the more that you save, the faster the interest will accumulate as you remain diligent and on course. Get well soon, Shannon! Your parents seem like very good people - very caring and kind. All the best to you and your family, and also to the doctors and labs doing their part in the background. Better times are just up ahead!

[@shannonmckenney5977]

This is Shannon, the interviews and video were long, hence the need to cut and edit a lot. Unfortunately the part where I said I do have anger was cut out (probably b/c I used some cuss words😬). I meditate, visualize, try different diets and supplements,and alternative health. I've have done this for all 12 years to no avail. I did this piece because I want this illness to be treated and recognised like any other illness. The $5 per person that the NIH gives annually for research is not adequate and quite frankly offensive. Not saying spiritual and emotional aspects don't help, but until we know what is going wrong with our bodies, so many million will continue to suffer. I'm glad you were able to recover. One less person suffering Best, Shannon

[@originalsongsbyadam2883]

@@shannonmckenney5977 Hi Shannon, I just wanted to check in and wish you well. I hope these couple of weeks haven't been too rough on you. Hopefully you've even had a couple of good days. Small victories, right? I just watched a few of the other Jackson Labs videos that were just posted. Some of the things you mentioned were part of my healing journey, so I thought I'd share in case anything was of benefit to you. I can't promise any help from my words, nor can I give definitive advice, but with that said, maybe I can offer a few tools or a different perspective. You had mentioned being your own diagnostician, using trial and error with supplements. This was a big part of my journey. I started finding that things that were supposedly good for the adrenals, immune system, etc, were often the causes of dizziness and migraines. One of the biggest culprits for me, was vitamin C(even just a single 500mg tablet). On good days, there were no side effects, but on days when my brain was tired, then about an hour or two after taking vitamins, I would feel adrenaline, dizziness, confusion, migraine, anxiety, etc. I also found that the vitamins were making normal canker sores into lesions in my mouth that lasted a month and were incredibly painful. When I began backing off all of the supplements, I started feeling better, albeit very slowly. I had to back off of technology use in tandem. On the premise that CFS is an overstimulation of the stress response(brain, nervous system ,etc), the blue light stimulates the nervous system, which is tied into the immune system; and vice versa, when the vitamin c (or other person-specific nutrient) stimulates the immune system, which is tied into the nervous system, then the nervous system gets stimulated as well from the immune response cause by the vitamin. I also found that doing prescriptive diets(ie good food/bad food) was not helping me. While certain foods gave me very clear and obvious reactions(even later in the recovery), such as dairy that was not cooked, which gave me overstimulated legs and anxiety (while melted cheese never did), I often found myself causing my brain and body more stress from always searching for food triggers, or listening to one size fits all advice about diet/nutrition. Aside from obvious reactions like that, I just started listening to what my body wanted, then going with anything that did not give a reaction. At my lowest, I was reacting to everything but rice cakes, sea salt and water. I was not too far above 100lbs then and am now within range of 200lbs +/- . In hindsight, I wish I would have stopped overworking my brain, always looking for patterns, focusing on symptoms(which at times was next to impossible, as they were debilitating), relaxed with the diet and supplement, and spent more time in natural settings(*though not pushing myself to walk or build endurance), and being easier on myself and more patient with the healing process, letting myself know I was slowly getting better, so as to not stress the bad days, and to keep faith for a better tomorrow. I don't know if any of this will be of use to you, but I figured I would pass along what I could, seeing as I'm about 85-90% recovered. I also know you have been going through this as long as I have(*for me, since approximately August 20th 2005). All said, this is just a friendly hand to help you up the ladder, even though I'm sure you are strong enough to climb on your own. Rest up, Shannon. Keep faith alive for better days ahead. I know this is a long journey and sometimes each day feels like its own year. You are going to get where you want to be and your life is going to be better than someone who never had this. The basic stuff people take for granted, will be the simple joys you savor. You are now one day closer to being back to full health. Remember: a slow climb is still a climb. And the more climbing, the better the climber, and thus the easier it becomes to get to the next level up. Fingers crossed for you! -Adam

[@Metaphoria_Music]

thank u for these comments Adam, hearing people getting better gives me hope

[@originalsongsbyadam2883]

@@Metaphoria_Music You are very welcome. You are going to get better and better, little bit by little bit. Keep the hope alive, and know you are one day closer to recovery than you were yesterday. Rest up and know your best years are yet to come!

[@Metaphoria_Music]

Thanks a lot once again :) And what you said about life being better after this disease, compared to someone who hasn't been through the same is so true. I know this because I got sick the first time when I was 12-13 years old (Lymes from a tick I got on my spine), and got well a couple of years later. Lets just say that my thirst for life was pretty strong after not being able to participate. I got in the best shape ever, ran a gym/ martial arts center + my regular 9-5 job of parcel delivery and sometimes I did DJ-sets too. I got sick again when I was 22, most likely from mononucleosis. Now I'm 29, but I have a good feeling about the future :) This disease have also exposed me to a lot of harsh but important truths about life, even though I'm not through it yet I can see the gifts it has given me :) Best wishes to you! @@originalsongsbyadam2883

[@brokenheart1348]

My life was before severe /ME and after. Ambitious , sporty , perfectionist& driven. Was famous for juggling 100 balls at same time. On top of the world . After emergency c-section With a baby ended up in wheelchair! Yes it is all in your head, you have depression etc after 3 year of different diagnosis like MS etc told me you have FM/ME. I cried atleast knew am not crazy. I know now that I burnt myself & my body out. I lost my career as pharm D. Still no one understand & gets me. Still do too much for my family . This year became 50, and DT2 as well due to reduced mobility . My cortisol has been x20 normal levels and that makes it difficult to lose belly fat. If I could live in deserted island , with no responsibilities and no one to expect too much of me, I would feel better. I am never pain free even with fentanyl patches , SSRIs etc .

[@johnsendra5061]

I has suffered for Human papillomavirus HPV) for 2years, I was given some tablets at the hospital but I refused to take it, They said I have to be on it for life so I don't want take a drugs everyday for life. No point in taking medicine everyday when u won't get cure from it and I was advice to seek for natural herbal cure, after some time I found dr unuareghe is the most trustful herbalist that have herbs to cure wicked symptom's,I emailed dr Nicholas 2weeks been his patient he cured my (HPV) with his herbal. I only used his natural herbs for two weeks it was 100% cure. I'm not (HPV) patient anymore. I'm happy about it i finally got cured out of this mess been in my body for 2years. I also recommend you if you're living with (HPV) or herps symptoms i also want you to be free contact dr Nicholas with the email attach to my post dr. [e-mail] and you call or whatsapp his number [phone] m.facebook.commobile.facebook.com/Dr-Nicohlas-110063584212241/?ref=opera_speed_dial

[@dezdez3092]

I have this I have had this for years I have bought every vitamin I could think of still feel tired every day the older I get the worse it gets I am strong I don't talk about it to ppl I always keep a smile on my face in public and for family but when I am alone all by myself I suffer in pain. I wish it would just go away. I also keep hope alive that there is some kind of cure for this. Chronic Fatigue Syndrome

[@cjcormier5212]

Great video very informative 👏 I just recently got diagnosed with it I totally get it on good days your good for a bit then bam your off... it sucks 😕 but keep up with the research !

[@johnroberts7659]

Ove been going through this for six years now. I feel like I'm loosing my mind. I'm weak and tired and I don't injoy my life anymore. One dr told me it was my wizdom teeth. I'm going monday to get them out. I need all the prayers I can get God bless.

[@johntarmaggiore5488]

I’ve suffered for about 18 years. I was able to feel a lot better thru nutrition. I don’t drink alcohol. Flour/sugar/fatty animal protein make me feel worse. I’m human, so the nutrition can be hard, but when I eat clean - I feel 90% better. Good days and bad days.

[@anythinggoes5574]

How do you feel when you invest bad food and drinks, John? I've had to cut cigars, alcohol, coffee out of my life. I accidentally drank these two large "energy drink tea bombs" a few days ago (didn't know they were energy drinks) and I thought I was going to need an ambulance. Also, what age did your symptoms start and have you noticed any issues with your neck? I have bad neck issues which feels like cervical instability.

[@MattBlacInc]

Insightful Video Thank You.

[@CricketGirrl]

What great parents. Mine didn't want to get involved. I am severe, and have been since I got sick in 3/2020. My parents refused to help me at all. They said they didn't feel comfortable getting involved.

[@e.williams13]

I hv suffer from this disease for about 7 years. My worst was the first few years when I was housebound for a period of time. One thing I have learned with this disease is to never stop moving. Once you stop moving and surrender to the disease you continue to decline. It's a catch 22. You either lay in bed for the rest of your life with no life..or u take that chance and slowly walk around ur house just to keep moving... At least if you keep moving you have a chance of improving.

[@gertyup]

Everyone should look into insulin resistance. Cut carbs from diet, reduce inflammation, potentially removing symptoms

[@jag2944]

I have fibromyalgia. I haven’t been diagnosed with CFS but I’m always tired and have no energy. I’ve read the fibromyalgia also makes you feel like you have no energy. I’ve tried a no pain no gain, but only lasted a few minutes and I’m bedridden for the rest of the week. I’m only 46 and it sucks that this happened to me. I’m not giving up. I hope to find something to turn my life back to normal 😢😢😢😢😢

[@RyanSmith-uw2ni]

I believe they are the same illness. I've suffered for 18 years. 52 now. I'm now trying things for mitochondrial dysfunction.

[@stacywoods9368]

I'm 48 , suffering with fibro and CFS for 18 years. I'm still searching. Judy Mikovits wrote a book called Plague. They discovered it was EBV and HHV-6 and I think XMRV viruses.... Retroviruses, in fact. That's the path I'm on now. Stay blessed. Keep the faith!

[@margaretcorfield9891]

My daughter was given a diagnosis of fibromyalgia 6 years ago, after 3 years of chronic fatigue, and a host of 'viral infections'. It was based purely on pressure points, and the elimination of other potential conditions. Over the whole. 9 years there has been a relentless stream of other problems which have become part of her life. She has been diagnosed with Trigeminal Neuralgia, Cluster headaches, POTS, Interstitial cystitis (but also she has repeated UTIs which do show a viral or bacterial cause), IBS, Rosacea (or adult onset acne...they don't know which), photosensitivity, peripheral neuropathy, labyrinthitis, poor temperature control.......they ignore the almost constant mouth ulcers, dry eyes, blistering fingers and toes, fever spikes. Things like brain fog, memory problems, hair loss, irregular and scanty periods are viewed as part of their fibro diagnosis. She currently has pericarditis, but no one has ever put any of these symptoms/illnesses together to offer any kind of treatment program. She is told to exercise more, drink more, and have CBT to reframe her attitude towards pain. She was also told she probably wasn't eating properly until she gave them a breakdown of what she eats...then they suggested she take iron tablets, and folic acid, because she might be anaemic....but blood tests showed this was not the case.......she remains exhausted at the slightest exertion, but no one seems to actually listen to her. ME/CFS seems a more likely diagnosis to me......but I'm not a doctor, just a concerned mother.

[@dirkkatz172]

most people with a microwave arent chronically ill because some people are more sensitive for microwaves, also the distance person/microwave is very important. The oven in another place is more safe. The radiation become less when the oven gets older.Some ovens give less radiation then others. In Russia the allowed radiation is less.

[@lymeuncensoredmyjourneydow3506]

I got it. It’s so often from Lyme disease I’ve been living like a ghost for almost a decade. It lead to Autoimmune Encephalitis. I am wondering if I’ll ever be that person I was for 42 years before this hell started. Doctors are ignorant. They actually look up the medical terms I use. Someone needs to help up.

[@guilost4943]

You are soo young im 34 years you can work?? You have partner boyfriend husbabd he support you??

[@queenofthebutterflies5212]

Is anyone else suicidal due to their illness? I am very measured about my decision. I've been sick with CSF, Sjogen's, Lupus, Fybro, Narcolepsy + a whole bunch of other associated illnesses since I was 26, I'm 41 now. Even my brain is being affected by the auto immune diseases. I've tried EVERYTHING to get better. I just finished an intensive hospital program but it did nothing to help. I am going to have to get a wheelchair soon. I have a 5 yr old son. I feel SO guilty I can't do normal things with him, like go to the park, take him to the zoo, etc. He was an accident/miracle (I was apparently infertile) I'm a single parent too, so it's even harder, in that there's no relief or time off as a parent except when he's at kinder and daycare. I've heard that having CFS is worse than having AID's. No one understands how difficult it is. Eg. Brain fog. I just got a $330- fine b/c I didn't remember the speed limit in the area where I have lived in for my whole life changes at certain times. I forget everything. It's like having dementia. These illnesses are HELL. If I talk about being exhausted to people (even if they know I'm unwell) so often they'll answer with, ''Oh yeah me too.'' and I'm like, ''you actually have NO IDEA of what I'm going through.'' I plan in committing suicide when my son is happy and married and can let me go. ''Agony'' - that's the perfect adjective.

[@queenofthebutterflies5212]

@Jules Kat Thankyou very much, lovely. I will look into those things xxoo

[@krisztinaszilasi7621]

Oh Dear, this is so horrible to hear! Please stop thinking about planning suicide. I am a Christian, have been suffering a lot because of a disease. But I started to ser that a loving God can not do this to His creatures. This is the enemy, the devil. If you check 'healing and deliverance' on KZbin, for example at hardcore christianity, you will see that this can be fought in the spirit realm, because the root of this diseae is there. God bless you on your journey!

[@lindakelley2676]

I considered suicide many times but you will escape your pain by giving pain to your children and grandchildren so it is a horrible message to them saying “Here, I am in so much pain I’m going to escape my pain by bringing pain to the ones I love the most. Please reconsider and live out the curse and prison of ME by staying in bed if you must but messaging your children that you love them, on your good days, show them love and acceptance. I understand but it cannot be justified to inflict pain on them, no matter what age, especially if you are a single parent. You are their world, don’t shatter their world. grieve the old you and embrace the new you.

[@queenofthebutterflies5212]

@@lindakelley2676 Thankyou very much for your comment. My beautiful son is literally the only thing that keeps me going. What you have said is true. I never want to harm him (or any1). It just gets SO TIRING mentally, emotionally, physically, spiritually. I really appreciate you taking the time to write to me 🙏

[@lindakelley2676]

@@queenofthebutterflies5212 I have struggled with this for 27 years, I want to be a peppy, fun grandmother for my grandson but physically have limits, it has to be so hard for young moms with kids, I really feel for them, let go of perfection, prioritize and pace, do your self care and just snuggle reading books if you can’t play. Use the love for your kid as your inspiration to battle through, it’s tough, but never give in to momentary impulses to end the hurt by inflicting the hurt, it would crush them, it’s our cross to bear. I wish you the best, I really do.

[@zedwms]

I'm 69yo, and have been suffering from ME/CFS for the last two years. My doctors have resisted giving me an official diagnosis, I'm sure because they have no treatment, thereby condemning me to suffering. On top of that, I can't even tell you how often I've been told "just go for a walk," yet every time I do, my symptoms become even worse. Is there no hope? 😢

[@janellinell4552]

I’ve felt like this for 3 months now so depressing 😥😓 I found when I don’t eat (fast) I have the most energy. Death in family and cancelled wedding/break up, constantly changing residences. I’m tired. Tired and sad.

[@laurenwise25]

I also have the best energy when I haven’t eaten. Such an odd symptom

[@Mfield111]

So sorry Janelli keep up hope mine ran out 30 years back! But, it seems they are closer today for a cure or at least helping you hold on God bless you

[@jaydenlove5925]

Interesting Doctor. But May I ask have you thought of Mutation Of Viruses ? Eg : Flu /strain 1 strain 2 as something mutaes the virus to feed off

[@jacquinewton8635]

Interesting take. I'll do some googling about mutation of various viruses