Here are 5 BASIC things that improved my M.E. symptoms. kzfaq.info/get/bejne/qK2VrLl52MjdhGQ.html

The stigmatization of this from family and friends who disappear, brings about PTSD. We have all been traumatized by the betrayal of those we thought loved us.

One of the worst parts about this disease is that the people close to you know that you have it, but due to ignorance they don't understand it. So people just sometimes call you lazy and it really hurts you. People with CFS *want* to do things, but they can't. It's insane.

Thank you for this video! It truly helps to hear others talk about this. 😢 I’ll be 60 this year. I’ve had chronic fatigue, chronic pain and inflammation, muscle spasms all over my body at times, and numbness for 30+ years. Doctors didn’t know what was wrong with me and I haven’t been to one in a very long time. I’ve cried alone for decades when I get so frustrated at being tired and in pain. It is a silent and very lonely disease. All you out there reading this, just know that you are not alone. There are people who understand. 😢

It's so bad when you notice how people around you talk to you less and get more and more angry with you. Making me feel like I constantly have to apologize for my state.

I have ME/CFS and the judgement element by others is the hardest for me. “You look fine.” Suggests that what you feel is not true.

Fighting the medical system made me so much worse. My mental health gets blamed for everything. Ironically. My psychiatrist dismissed me from care because I’m mentally stable, issues still, but stable. She’s the one that sent me to primary care. I did get my ME, CFS, & fibromyalgia diagnoses but that’s as far as I got. Once I declined a well woman exam she lost her marbles. The PCP. Like you said. I have my mental health issues. Well duh. I’m chronically ill. My entire life, future, hopes, dreams, ability to work & be financially stable, all ripped away from me. Why on earth anyone would choose this as a method to “get attention” is beyond me. The Mighty is a fantastic online community for anyone interested in having some sort of human interaction. :)

I'm in tears...all these - and more - were said to me at the beginning - 23 years ago - and still are. I was very severe and my friends disappeared in an instant and my husband and family have treated me terribly. The abuse/neglect has been horrendous and sent me quite literally to the 'edge'...and it's still going on...and I'm still very ill. I've given them so much research but I'm always told it's biased and they dismiss it...yet they read a random piece of rubbish in their newspaper and tell em where I'm going wrong...*sigh*. The lies told by the medical profession have caused untold damage. I'm going to show this to those closest to me and just 'hope'. I'm still severe but have never given up. Thank you.

It is the worst when your family think you fake it and tell you it's all in your head 😢. Sometimes I wish they could feel what I feel for one day only.

Completely understand, most people don't realise how difficult it is. Its a bloody nightmare existence.

23 years now. I got rid of people including my sister who could not be bothered to understand. I will no longer try to justify an illness that changed my life forever.

I’ve been called lazy so many times. Even by friends and family who know about the illness. It’s a very difficult illness to understand. Twelve years into this disease and it still gets to me that people think it’s “all in our heads”. Someday people will respond to this illness with understanding, kindness and giving. Be kind to each other, it’s the only thing that really matters!

Thank you for this. From a mother's point of view, imagine how it feels when friends, family, school officials, and doctors look at you like it's Munchausen syndrome. It's all in Mom's head for attention, control, whatever. That doesn't help the kid and adds to the stress of being a caregiver. Still, it's my daughter who needs recovery. Not me. Anyway, I could write a book for a reply.

I asked the doctors to euthanize, I have a joke of a 'family'. My mom is ignorant and much like my Grandma was to my Uncle's MS who's full of self pity rather than supportive. A total avoidant. I've become so isolated and finding people like me in person seems near impossible. I watched the documentary, Unrest and I was surprised to know so many people out there who are like me do actually exist. I thought maybe it was rare and that's why doctors didn't find anything but now I know it's cause they think there's nothing to find, that it's all in your mind. Except for the doctors who ended up getting it themselves. Even though this has helped me and I'm still here, I'm uncertain of my future in terms of how long I can continue to suffer through this alone. A lot of the time I feel like I already died. Day by day, I can only live in the moment. I suppose that's the beauty of illness.

Thank you. I’ve had CFS/ME (and fibromyalgia, IBS, chronic migraine and some other stuff) for 10yrs. I’m totally socially isolated now, because it’s just too exhausting to constantly have the same conversations. People don’t understand it. I’ve come to the conclusion that they don’t want to understand it. It’s beyond exhausting to repeat the same explanations and have to justify yourself, so I appreciate the effort it took for you to make this video. I’m currently crashing, I know it will get worse before it gets better, and that’s frightening because I know only too well the battle ahead. The people who should be closest to me and should understand me better than anyone in the world don’t fully understand this, and some have just walked away, so it’s also very lonely. Anyway, thanks for making this and trying to get people to understand.👍🏻

I was 15 when I got sick. Unfortunately, that was 35 years ago. It *was* really soul destroying to be so young and so sick, but not dying. I can totally understand the high suicide rate. I held on though, because I was convinced there could be joy in life, even a limited one like mine. It’s so horrible that so many years later, people are still going through the same struggle to get a diagnosis and get support from doctors, family and friends. Thanks for your video, I’m sure it has done so much good over the years.

Thank you for this, I feel so lonely……..ME/CFS/Fybromyalgia, I have migraines, bad tummy and poos…….arthritis…blah blah…….I truly have had enough.

It feels like there are holes in my feet and all of my blood/energy/oxygen is draining out of me, it feels like I'm shutting down. Unless you're a sufferer of CFS/ME people just don't understand what it's like. Wishing you and everyone with this condition good health and happiness .

Somehow close family & friends forget that many of us were told our whole lives that we were “too hyper!” Now we’re lazy, drama queen, attention seeker, hypochondriacs, etc. The CFS & Fibro had me thinking & believing I was totally losing my mind!

I can relate to all of what this young man is describing, I love ❤️ my daughter but the other day she said are you sure it’s not all in your head!!! I am like what? Your kidding me , I wish it was all in my head !!! It’s everywhere in my body not just in my head that has headaches every day, this illness does does not discriminate anyone can be struck down with this illness, so please show some compassion respect & love it’s vital to our healing ❤️‍🩹🙏😢

I am now 67yrs old. This is my story, it began at 33yrs old...Thank you for this video,I can't explain this anymore. You have done a great service for me in your 12 minutes... GOD BLESS, 🙏

I am the last person who wd hv chosen this. I felt contempt for " sick" lazy people. Then it was me. I've sure learned a lot.

Thank you for posting this.. I’m in a few ME groups and really these are the only people who could possibly understand. I’ve had this since 2010 and have gruadually gotten worse and worse. Now I’m 36, turning 37 this year and having one of those days I cannot get out of bed. This video was very relatable and you’re right, we’re one of the strongest people out there

This video found me at just the right time as I finally came to accept that I have CFS. For 4 years now I have been too fatigued to do any physical activity or have a job. I've been living in denial about how bad this is. I used to be a highly active and motivated young man and just can't accept that I'm not capable of productivity anymore. After 4 years of basically lying on the couch all day, alone in my house and lying to my friends and family that I'm ''just taking a break'' or ''I'm working on something'', I'm ready to come out to them.

I've had ME/Fibromyalgia for 25 years now and luckily my ME has been moderate mostly. Some really bad times but generally ok. My heart goes out to all those brave ME sufferers, with severe illness, who have endured torment and despair....from the illness and the Government. I am humbled. You are so special.

This video made me cry (like bawl and fan my face lol) near the end of it, especially when you touched on the stigma that women face. I can so relate. I am a woman with CFS. I'm also an electrical engineer who works in an industrial environment. As a female engineer (even in a society that's relatively supportive of my professional choice), I already have to be careful about not showing any characteristics that may be mistaken for weakness. Add CFS on top of that, and booooyyyyyy...the troublessssssssss...lol. But I'm just gateful I can still work. I had a crash and burn at the end of last year that I really thought was going to end my career. But thank God, we still *HERE*!!!!

It's insane what toxic molds do to us.

Dude Thank you for this. It was like you were telling my story. I'm in my 20's, I was at the height of my strength in weightlifting/crossfit, I was vegan, and mostly mucle. Then in late 2017, early 2018 I got immobilized by what I thought was flu. I was bedridden for 6 months. I lost my progress (obviously) and gained about 25-30 pounds. So my doctor kept saying "you are overweight, you need to lose weight", he also said it was all in my head since I have battled with anxiety and depression. So I went to get a second opinion and since I had many symptoms of cushings, I went to a specialist who told me it looked like I had cushings but my adrenals were low. I even went to a private hospital (I live in a country where there's universal health care) and paid $400 dollars for a 15 min appointment and to be told that I NEEDED TO LOSE WEIGHT. I felt so low. I've also battled with ED so this was not helping. I had had fevers EVERY day for months now, along with the pain and myriad of other symptoms and doctors kept saying they were lifestyle related symptoms. Even though I've been bigger in my life time with NO pain and much smaller with unbearable pain. I've been to 4 specialists now, and everyone has been a middle aged man, who has told me I'm fat. I feel so discriminated against, and frustrated because the weight gain is a RESULT of my illness, not the cause. I can't even vacuum anymore without pain and a fever. I've felt like a lesser being. I also live in a countrythat exclusively believes ME/CFS is somatic which is making life even harder. I have 99% of the common AND uncommon symptoms but I'm so fearful it'll be impossible to get help. I have an appointment to get a referral to an infectious diseases specialist just to keep ruling things out but I often feel like life is just not worth it anymore. It's been nearly a year and a half now. This video gave me hope though, thank you. I might show it to my doctor. Edit: Im beyond blessed that I have the world's most supportive family, so that is the only way I could have done this.

firsr 4 minutes EXACTLY the same. I was in my doctorate program, a clinical psychotherapist- having pit myself thru 3 degree programs already, a preprofessional ballet dancer prior to that, and teaching music on the side. The best was when MDs tried to say "anxiety" cuz, excuse me, I AM a mental health clinician - if anyone was a psych expert in the exam room, it was me. I dropped the phrase "i'm a clinician" A LOT just to get heard- which is bullshit to have to do. And despite all my work to get to where I was in my career, when I finally became disabled by ME people in my life suddenly called me lazy&implied I was trying to work the system- um, sure. Now that I no longer have the energy to go running or hiking or be friends' unpaid therapist, almost everyone has disappeared. Ironically, I wasn't depressed when I first got ME, despite what the first MDs tried to say, but the impact of being labeled and stigmatized despite what I had always prides myself on was a tremendous work ethic, I find myself sick, frustrated and now truly depressed. Your story really resonates with mine. I'm done trying to convince or educate the people who made up their minds to understand. The only ones I have the energy for are the ones who didn't need any outside validation beyond mine.

You’re awesome. At one point, I thought to myself why did I get stuck with the one illness no one believes you have. It cut deep. Lol

Totally get all of this my 10 year old daughter was diagnosed 9 months ago. Struggled for two years to get her diagnosed. Doctors were awful saying it was all in her head it actually caused her more harm by what these Doctors said.

Thank you for this. I've had ME/CFS since age 17 . I didnt get diagnosed until 10 years later . By the time I was diagnosed with it I was bed bound home bound and wheelchair bound. In that 10 year time span I had two children. Loosing my ability to take care of myself and needing a caregiver . I am now fed by a feeding tube and rarely am out of bed or my couch . It has devistated my life and the judgement I received was heartwrenching. For ten years I did what you said i pushed myself and tried to portray to everyone that i was ok and eventually i hit a wall and couldn't do it no more . Thanks for this. I will show others .

I develpoed CFS and Fibromyalgia as a teen in the 70s when I contracted lyme disease. I struggled, cried, fought it and had a history of taking too much sick leave and bouts of brain fog. I persisted while doctors accused me of awful things. Finally, in the early 2000s I went to bed and didnt get up for 2 years. By then I had the most supportive husband in the world and two good friends who didn't give up on me. I never really recovered, and had to quit working, but when I was validated with a diagnosis, so much of what I went through over my life finally made sense. I am loved and supported and incredibly lucky to have that. I spent my life being "weird and socially misunderstood and unreliable." But even so, I consider myself one of the lucky ones. Hang in there people!

THANK YOU SO MUCH for this video!! I'm an over 40 year survivor of CFS/ME and the devastation is REAL!!! The judgement and dismissal is truly the worst part! That and the fact that the VAST majority of doctors dismiss us wholesale and infer that it is somehow our fault and that, if we just really wanted it, we would get better....thank you for your validation and education....only through knowledge will the stigma resolve and understanding and support result. Hang in there...

I was extremely lucky although it took 5 doctor visits to get a blood test for Mono/Glandular Fever - because I never recovered it went from Post Viral Fatigue to ME after 2 years but in '97 there was no understanding that work wasn't possible and I looked fit and healthy so why couldn't I ... I had a friend say a few days ago it was anxiety no ME - my God people still think you need to be in a wheelchair to be disabled. Thank you so much for doing this video which I'm going to show her X

I’m 16. I developed CFS due to getting mono around the age of 9 (or so we believe, as it is something that has happened before to other people and there’s really nothing else that could’ve caused it) I slept that entire summer. Only waking up for 1-2 hours to eat or use the restroom, then went back to sleep for 18 or so hours, and repeat. Most of the time, after your body beats mono, the fatigue disappears. Mine did not. The doctors, throughout the years, have blamed it on puberty, depression, hormones, etc. After 6 years with the same problem, sleeping 14-20 hours a day, they figured, ‘oh? Maybe it’s something else?’. I got blood work done, went to many specialists (infectious disease specialist, cardiologist, neurologist, psychologist, psychiatrist, immunologist, endocrinologist) in the past year or two. The ONLY irregularity in all of my results were that my antibodies for the mono were EXTREMELY high, and this was when I was 15, long after I got mono. My body was seemingly trying to fight the virus that was not active anymore. The only other thing that was off was, of course, the mental evaluations. They blamed it on depression, since they did not know what the antibody abnormality meant.. or what it causes.. or how to even treat it.. they did not have any experience with it. I argued that I’m not sleeping because I’m depressed, I’m depressed because all I want to do is sleep. My psychiatrist wrote me a prescription for adderall to keep me awake and claimed I had ADD in my files in order to prescribe it for me. Adderall is not meant to keep you awake, it’s meant for you to focus. I take the highest dose that I can for my weight-age-height, and I am still able to go to sleep while on it as it does little to nothing for my fatigue. I’m seeking medications specifically for CFS, but due to my age, no doctor wants to prescribe it. I slept 38 hours this weekend, I only woke up because I had school. It’s impossible for me to stay awake longer than 8 hours at a time. School is my biggest challenge as I’m taking all honors and college courses. I’m petrified that I will not be able to complete nursing school when I start attending college. Nobody I explain this to understands, they say ‘oh I think I have that I sleep a lot, or oh I take naps a lot, oh I’m tired when I don’t sleep too! You need to get more sleep! Eat more vitamin D!’ It’s a level of tired that’s unimaginable. It’s as if I stayed up for 4 days in a row, 24/7. No matter how healthy I eat, how much sleep I get, how much exercise I get, how many stimulants/caffeine I take, all I want to do is sleep. I cannot focus in class, I cannot focus on reading anything longer than a paragraph, not because of ADD, because all my body can focus on is SLEEP! SLEEP! Nobody takes it seriously, I do not know if it’s because my age? Or they think I’m overreacting? Or they’ve never seen it before? Or what? But I just want help. Normal teenagers are able to go to school, work, maybe a sport, do homework, etc. all in one day. I can barely stay awake just to attend school. I just want to be normal. All I want Is to be normal, be able to do stuff! Live! Be happy! And it’s so aggravating because the rest of me is fairly healthy (besides intense migraines but I believe it’s due to the CFS). If I just wasn’t so tired, if I could be given a magic pill, if people would LISTEN, I might actually be able to live. But most of my life I’ve been asleep. I probably will never get to experience what it’s like being a teenager, so ‘full of energy’, able to do sports and activities and work outside of school. I can’t remember anything anymore due to how foggy my mind is. I cannot remember what I did two days ago. I’m often asked about my childhood but I do not recall a single bit of it. How am I supposed to be a nurse if I cannot make it past nursing school because I couldn’t stay awake long enough to pass? The depression stemming from this is IMMENSE and I often ask if it’s a life worth living if I cannot even live it. I went on a vacation to Hawaii on my 16th birthday. I was so exhausted I was falling asleep in the car only an hour after waking up. I couldn’t even enjoy Hawaii, and you’d think if it was all because of depression, in Hawaii I wouldn’t be so tired because I was so happy. I slept the majority of my week there. And I was happy for what little I could experience, but often bursted out crying in anger and frustration because I just wanted to enjoy, what should be, the happiest birthday of my life.. but couldn’t stay awake to even experience it. I want to do a sleep study, perhaps that will get me somewhere but I don’t have health insurance as I had a lapse. I’m scared that I will never be able to get relief. That I will be like this for the rest of my life. Because I’ve exhausted almost all of my options. If the last few options do not work, I do not believe I want to continue a life like this. I’m tired of being tired. I’m tired of explaining everything to every doctor and all of them furrowing their eyebrow at me then giving me absolutely nothing but ‘well just try to sleep less’, or another lame excuse as to how to cope with this since they cannot do anything about it, or don’t understand it. I think of suicide almost every day. Ever since I was 10ish. Hoping a doctor would eventually ‘cure’ me or give me some energy, I never proceeded in it. But now that I’m realizing that this syndrome is chronic and will probably be with my the rest of my days. since I’ve exhausted 90% of my options, hope is deteriorating fast. It’s like I have to kill myself for the doctors to finally say, ‘perhaps she wasn’t over reacting?’ and maybe start caring a little rather than brushing it off as a ‘teenager thing’. It’s ridiculous. I could barely stay awake writing this bloody comment.

I'm 31 and have suffered with this illness since 27 ❤️ my heart goes to other ppl who suffer with this illness and do not get adequate support

Balling my eyes out watching this. You hit every nail on the head. Everything you said resonates with me. It hurts but it's so nice to hear what you said.

it's been 12 years since I got ME. it took me... just... 11 years to put all puzzles together. Yes, I didn't know that it's ME/CFS for 11 years. I thought I was going crazy! I wish there was more research done.

I couldn't stop crying watching this. Wish I was able to word it like this to people so I've just shared it instead. Much love.

My daughter got it at 8 yrs old. 6 years looking for answers. Finally a cardiologist and rheumatologist diagnosed. Started a anti inflamatory diet, home school, less stress and vitamins and minerals added to diet has helped. Finally starting to make some positive changes. Find a base line and work tiny bits forward as able.

I was diagnosed with FND/Conversion Disorder in August/September 2023. I am starting to see more and more KZfaqrs and FB group pages popping up about PTSD, Long-COVID, and FND/Conversion, and now this... I had a very uncomfortable conversation with a family member who is a medical professional. Do to their lack of timely support efforts. I am privately working with Vocational Rehab now to hopefully get a job with accommodations. Because I am unable to get disability benefits nor will attorneys take my case because the complexity of this new FND/CD disability. So I figured I have to have a history of relapsing and then maybe..? Anyways they asked me what I wanted to do job wise... and I said I need/want to do an office job, sitting, answering phones, and maybe at the college because I knew I would be accommodated well and get quality benefits. My family member was like why don't you do a job stocking shelves instead...? Then I was talking about how I am trying to walk a mile at least 1-3 times a week. If I can't then try again after this malaise is better. if All I can do is 1-2 days... cool. I am an artist and its upsetting enough that I can't paint for days, weeks, and months. They were like why not do 5 times a week instead...? While today I walked around the neighborhood for the first time in months WITHOUT my walker. Which is huge accomplishments. But scared because I could have fallen because I tried to swipe my hair back and wipe my nose because it was so cold while walking. Then I like walking in the 5-6am because its dark, less dogs barking, cars, and birds. But upon getting back to my apartment I got dizzy... because of the lights in the hallway. Last week I attempted to go back to work however I was in extreme pain for days. I have never been so upset in my life. Feeling unsupported, dismissed, somewhat abandonment...by family members. I deserve as much independence as possible with this. But if they were involved in my life they would see how debilitating this FND/CD is. I know its hard to watch. But equally frustrating that I can't push myself anymore.

thank you for this. this pertains to anyone with an invisible illness. it’s a tough life. people around us make it tougher. as someone said above, “why would i give up a great life for this?!”

Thank you for this. I was told years ago I had CFS but it was never put on record. It has taken almost 20 years to get my diagnosis and in that time I've been told all these things that you mention. I'm lazy although I pushed myself every day to get up and have the house spotless I was a bit OCD about getting everything done. My son told me there was no way I was sick and I didn't have any medical problems. My daughter thinks I'm just attention seeking. Now through other reasons they don't speak to me. I will not let this disease define me and people can believe what they want. I have my diagnosis and feel justified. I will live the good days and make it through the bad days with Jesus help. Never give up x

I was 16 when i got CFS. That was 7 years ago now. My mum had just died of terminal cancer and i was her young carer so I switched instantly from being the carer to being the cared for and my life ended. I had to drop out of school, my dad had to become my carer but got angry with me because he didn’t understand. My extended family and friends left me, still to this day think i’m lazy and doing it for attention. I now have pushed myself to go back to school and i’m working towards my degree but it’s so fucking hard. I’m barely functioning but I’m doing well in school. I have a few great friends that support me but I don’t ever get to see them. I feel like my life was over before it even began. I just wish i had better support I wish people understood it better. Thank you so much for this

Thank You for this video. It explains so many of the things I experience. I have sent this video to some of my family. I never feel like they understand. I hear things like oh I'm tiered all the time too or oh I probably have it too I don't sleep well. It's so frustrating. I have had ME for 7 years and also developed a secondary autoimmune disease simultaneously that has left me with 15 percent vision in one eye both diseases started at the same time. It's validating to see others share their story and know it's not just me. I'm not alone, lazy, depressed etc. I like many others just want so badly to live. Thank you for the voice!

I've never heard of this but it made me cry. I have felt like this and was in bed almost a year but mine was depression. I'm so sorry for those who have this. I am not one to judge. I have a lot of problems mentally (although not many know) I sympathize with others very easily and it breaks me to see someone hurting.

Really the strongest people ❤

I got ME when I was 15. The first years I struggled to get out of bed. Doctors denied me….for 15 years. Long story short. Slowly over the years, by finding alternative solutions for myself, I got better - but I still struggle daily so much. Wish I had some release. …. I got diagnosed the year I turned 30, finally a doctor listened to me. Now at 31 I’m still feeling so lonely, wishing I had that support group, still haven’t found it. Thank you for the channel, it’s very helpful! ❤🙏🏼

Don't feel Sorry for them (me), understand the strength it must take to LIVE IN illness. It takes more strength to live in pain no one sees believes can touch or feel. I have often used the flu as a quick way to explain a bad day. CFS is a side effect of of Chron's and Fibromyalgia. I cried 5 times in this film. Which causes headache and eye pain, so I avoid it as much as possible...but for the FIRST TIME PPL physically weaker than I, expressing their struggles, reminds me one I AM NOT ALONE in these illness'. I got chron's at 27 yrs old...then more and more issues as I went to doctor after doctor. I had to ask a doctor to send me to a foot doc. for my feet to back pain (felt like a miracle, I could walk again, like a young woman), he asked "why?". Really?!?!?! I know more than you, Doc.? That's helpful. I have a Framily that has been unbelievable in their love and support. Without them, and my Stepfather who supported me without questioning it, while others in the family, still some, don't believe it. I could go on about how this fillm said the things I've felt and shared there story, when I KNOW they are weaker physically. YOU ARE MOUNTAINS!!! PS. I started in water workout and moved to t'ai ch'i ch'uan24 form and qigong...to fill up my life battery each day. I even use that phrase on my T'ai Ch'i, & See FB Page. LOVE STRENGTH HEALING LIGHT AND KNOWLEDGE TO FIGHT BACK! ONE DAY AT A TIME, AN HOUR AT A TIME , OR EVEN MIN. TO MIN.....climbing a mountain daily

crying for this video. I didn't think a lot of people actually recognized CFS and it has been really alienating, thank you for speaking up.

Saw your vid on the M.E. FB site.. This s brilliantly explained - you have a new subscriber! Most people really dont care unless its something that affects them - but for those who care to know - this is spot on.

I stumbled across this video tonight. Thank you for articulating so well what this might be like to a healthy person! All the doctors, the normal tests, the blank stares from others. Of course, an outsider will never truly understand, but you do a great job of describing this living hell. Like you, ME/CFS is the worst thing that's ever happened to me. It's completely destroyed my life.

I can't believe it's been about 4 years. I got it when I was 15, half way through my sophomore year of high school. I turn 19 in 4 days. I don't even know how to express how much my life has changed in that time. What's made it increasingly difficult for me to get a diagnosis for ME is my history of chronic mental illness, as well as overlapping symptoms from severe asthma, food allergies, and insomnia. I'm incredibly fortunate to have a supportive and understanding family who stood by me when it became clear how debilitating my symptoms are but I will say that the marginalization of this condition is definitely something I've experienced, even(and sometimes especially) from professional medical practitioners. My friends and family may never fully understand what it's like to have my condition, and it's my personal opinion that you would have to experience it to truly know, which I wouldn't wish on anyone. However, I've still done a lot in these 4 years. I was able to get my General Education Diploma online, and am about to attempt to take one class online from a community college near my house this coming Summer semester. I've been diagnosed with these things, have applied for supplemental security income from the SSA and have even been passed through the first level of that process (most applicants are rejected. Some law firms won't consider consulting for you unless you've been rejected at least once. I guess 4+ years of medical records help.) and onto the independent examination stage. I've picked up basic graphics design, and I've learned to manage as much as I can with what I've got. Some days, I can walk around the block without falling over. One day, I hope to be independent and self-reliant, not only financially, but physically and emotionally as well. What I find incredibly frustrating about the illness(you know, despite everything else), is the lack of research on it. The CDC and NIH have pretty much ignored it entirely, despite attempts to bring information about the disease into the spotlight. The research environment and funding for such research is incredibly poor. All proposed treatments so far are for temporary symptom relief, and as mentioned, it's an illness mostly found only when all other medical testing has been exhausted.There has been no cause whatsoever identified for the illness, and while some patients develop it prior to a viral infection, others do not, causing much of the understanding about the disease to be purely theoretical. In fact, the best and most credible(and perhaps only) research ever to be fully explored is going on THIS year through the Open Medicine Foundation by one Dr Ronald W. Davis of the Stanford Genome Technology Center (whose son has severe ME). I don't entirely understand their research, but that's where I'm looking to next for any possible discoveries on the condition, as they have been incredibly open about what they're doing. I would highly recommend looking them up. I couldn't really tell you everything I want to say in this long-winded youtube comment that will most likely be lost amongst many others just like me, but I guess I still wanted to share a small, vague piece of everything that's going on with me: for me, and against me. Thanks for this.

Hi, great vid. Saw it on fb. Nice to hear it from a man, but I wish you didn't have it!!! I have forwarded it to the men in my life, who after 20 years should get it (perhaps they're bored of it. I know I am!,) but it may make them look at ME and me differently! I do think many people think uh oh a woman, depressed, PMT whatever?! Not funny!! This disease has stolen my life literally. I am at the end of my tether so often and think ok, time to check out, but.. I have a daughter and may be some hope?! Thanks for doing this vid. I'm subscribing! Wishing you well! Thanks! Sally 😊👍🏻

Thanks so much😊Shame 7yrs on people STILL think & treat you the same😢!! keep well Johnny😊

thank u so much for this validation. this is exactly what it feels like.

Thank you. You are,the best. I was on the early wave got sick in 91. Came from a medical family They were totally dismissive. It breaks your heart.

Thank you so much for this video, i first watched it when i was 15 and had been sick with ME/CFS for around 4 years. It is kind of insane how accurately you managed to describe that experience, especially with friends making fun of you, your family not understanding & thinking you are faking it for attention. I never really managed to find anyone my age that was sick, and in some ways i could not relate to adults with ME/CFS, so until i watched this video i really did not feel like anyone in any way understood how much i was struggling since i was not even a teenager when i got sick. thank you for trying to help people understand.

Stress is a big trigger for an exacerbation........I went to counciling to make sure I was OK in that dept.lol He inferred hypochondria, but my personal history and work history did not support that. He said to me, well you get all these secondary gains for being sick. I asked him what in the world is scsecondary gain for being I'll. He said well you know, you don't have to work anymore, well that's TOTALLY not a gain, because you get more from your job than just a paycheck....he said well when you can't attend family functions, your family brings you a plate and pay special attention to you. I had to laugh because that has never happened......of course you get depressed, having an illness is like a death..of yourself....my 2 best friends cried and said, " but you were the fun one"...and I am not anymore. I looked after my Mom ( dementia) until I was in the bed myself, she ended up in a nursing home right after that and passed this year at 97. We sure had some good times. I miss her, we always helped each other. One of my best friends died of panc. cancer and got to die at home because I was able to stay there with her.....I surely miss her too. Having Cfids is NOT a death sentence, but sometimes you feel like you are going to die.....Enjoy life when you can and be grateful for every day, because every day IS a GIFT, in whatever way you can find the humor and gratitude in it.. I look back over my life from 24 to 62 and realize how blessed I have been throughout it all. Hold onto your humor and your gratitude. Do what you can, with what you have, wherever you are. Pacing is pushed a lot....doesn't work for me. I understand the theory but on those rare days when I have a more normal energy, I do use that energy all the way up until I fall into bed , exhausted but exhausted FOR A REASON! I once had a two year reprieve after a hysterectomy and I thought, I feel normal again, I don't have Cfids, I just needed that uterus out......and then I crashed again.. Difference between night and day.I haven't been able to figure out what exacerbates it and what helps it, so at least I could have some control. Sometimes I forget that I'm not how I use to be....I have had to learn not to agree to do anything in the future because too many times, when I was asked, I felt good that day, only to be crashed by that day. I still sometimes forget.....

Wonderful description and very good to highlight the effects of disbelief, support and awareness from other people including medical that ME/CFS suffers have to deal with. will definitely look at other articles on ME/CFS you have made.Well done on spreading awareness.thank you.

I’ve been dealing with what I can only describe as chronic fatigue for the past few months(or more). I also have other symptoms of chronic illness. But I’m terrified of going to the doctor, I’d kill me for a doctor to say it’s all in my head. I have some mental illnesses that a doc could easily blame my symptoms on. And I’ve obsessed about my health in the past due to my OCD. Thank you so much for making this video, I bet it’s been so helpful for many ME/CFS sufferers.

5th round for me with ME and this time it's been 10 years YOUR RIGHT YOUR AWESOME !!!!! Sadly I tried to advocate and I was attacked friends/family are gone I am starting to feel I can't take much more and NOBODY SHOULD HAVE TO GO THROUGH THIS !!!!!!!! I would share this however am to scared of back lash can't take much more cant even use FB or email very well totally house bound bedridden and have never felt so alone in all my life however in a weird way I have come to terms with some of this just not my long term friends (I feel they hold my old self hence so important they are around). THANK YOU FOR DOING THIS MUCH APPRECIATION AND SUGGESTION MAYBE TALKING ABOUT HOW IT CAN EFFECT EVERY SINGLE SYSTEM IN THE BODY MUSCULAR SKLETAL ENDOCRINE ECTECT sorry best I can write I know it might read like a cats dinner !!!!! Apologies health love and may light one day shine upon us all again hugzzzz ("Feef the gal from oz)

I been called lazy, unfocused, slow, clumsy soo many times, and after i told them i feel tired, maybe even more then they might been, they say stuff like you dont eat or sleep well, because your lazy and dont take good care of your self. That they feel tired as well but they still could doo all those things i should do. No matter what you say, knowing you feel different the any other person, they cant and wont understand you. Because they never experienced it. Sometimes when you try to explain they feel iritated and they try to force their opinion on you. Its soo tiring trying to explain ur self to people that wont understand you, even more so, to get stigmatised after that.

Thank you for speaking out about this horrible disease. You are so right , people just don’t get it and it is 2019 and family and Drs. still look at us like we are hypochondriacs and like you said want you to get counseling and see a psychiatrist. Ugh!!’ Again thank you for raising awareness people need to share this video. Please!!!! God bless you

Hearing you say “they will be better” meant a lot

Thank you for sharing this. I have been doing CFS videos for a couple months and I know that it takes a lot of energy to do this and I couldn't of said it better. Take care of yourself.

Such an encouraging video. I’ve been watching every video on ME that I can find. The doctors have checked everything and can not tell me why I am so tired. It’s going on years, no answers, no treatment, no diagnosis. All I have are videos like these. Thank you!

Thankyou. This is the video that I wish I had seen when I first got diagnosed with ME/CFS. I was 16 years old when I was diagnosed and I have not been the same ever since. There's nothing worse than being young and being in so much pain but not having anyone to support you or try to understand you. I hope that any of you that might be suffering find some form of comfort or relief. And for those of you who know someone with ME/CFS but do not understand, then please educate yourself, do what you can to validate others and show them the compassion that you would want if you were enduring the same sufferings.

Yes thank you so much for this video. I had CFS/ME in my early teens and I was constantly told I was lazy I was staying up to late when I wasn't but my family didn't believe me. I was alone with it til I was in my 20's and my husband now was the only one who believes me, I finally got diagnosed three years ago, I've so happy to have a doctor who didn't dismiss me and I hugged her and cried.

I was diagnosed on the 12th but I've had it for 13 years, since I was 22 years old. I was really bad at one point, sick in bed for most of the day unable to stand for more than five minutes at a time and without insurance because I couldn't work and no one understood. Then I got insurance but by then I had anxiety so bad. She did blood work and of course it was normal. All she did when I came in was bring up my anxiety and do bloodwork and ask if I was depressed. Then in a weird set of circumstances I ended up in the right place with the right person who heard me and diagnosed me. I have felt so alone and I've been looking on the internet since I was diagnosed for something; connection/understanding a way to explain things to my family without having to do it entirely by myself and I found it in your video. Thank you. Your video is not as technical as the others and it says everything I want it to say.

Thanks for sharing as a male with this health challenge! Many great points! Blessing and health to you!

Thank you so much! I have had it in 10 years! Since I was 32 years old. You describe it so well. I also describe it as having flue 24/7 and if you are not strong mentally you will break down! And they say we are psychology ill!!? I had always looked positive on things which have helped me a lot through my illness but after years I feel so embittered, angry and more sick because of the treatments of the government! I hope the best for you!

thank you so much for this you literally took words out of my mouth just shared on my ig stories

I really appreciate this. Been almost a year now since I got diagnosed. It feels so lonely not being able to explain to people how it makes you feel, not knowing if people even want to try and understand or constantly feeling like people just don’t believe you. To hear someone who actually understands it is really a breath of fresh air.

All I can say is thank you for this. I was crying watching this because for those few short minutes I actually felt like someone understood exactly how I felt. Dealing with other people and their judgements and expectations is the worst part of this illness for me.

Thank you so much for this video. I've been sick for 5 years now, I got sick when I was 14. I wish I had had this video a few years ago! Great job.

Thank you! I developed this after I turned 24. Its about six years now. I feel like our stories are similar. I was a strong athletic male and I played baseball and soccer in high school. Did great in undergrad and almost made it through medical school. So I've been an "almost doctor" for a few years now. Spend most of my time in my room with blackout curtains. I'm gradually getting better. I just subscribed and I'll check out some of your other videos.

I was older. It was horrible for me. I used to have almost too much energy. I was diagnosed with fibromyalgia first, because I have had one hell of a lot of pain. I've been told over and over to get a "little more exercise!" It will help! But it doesn't! You exercise, and instead of feeling the way you always have - I was a gym rat, I loved my aerobics, I was a dancer, I liked to bike, to ride horses when I had a chance, to swim, to do lawn work, I even liked to clean house! - and feel worse. Worse. Horrible. Down for a couple of days. That was when they figured out I had fibro and ME/CFS. Even doctors don't understand, some of them. Saw a fecking neurologist who tried to get me into water aerobics. When I got home, I threw the paperwork he gave me on the floor and walked on it. It's still there. I'm too tired to pick it up. And I'm still not as bad off as some people with this.

I need to share this on my Facebook profile because I know for certain lots of people won't view it simply because it's not relevant to them. That really saddens me because of the struggles we all face daily, through extra knowledge this could make our lives a lot easier. This clip is amazing and has made my weekend a bit better. Just when you want to give up and that urge to give up is overwhelming. Still not willing to accept that this is as good as it gets. Thank you, I have subscribed to your channel 👍

Thank you for this video. This sums up the past 7 years of going to every doctor and specialist. I was diagnosed with cfs in 2015. It's the worse thing ever.

Yep, I was in my early 20s. I was a competitive athlete who trained at high altitude and LIKED exercise.

As someone with CFS/ME. Thank you.

This is totally it and well said. I haven’t been diagnosed with anything yet but am eliminating everything it could be. I have been to two endocrinologists and now heading down neurological type stuff. The only possibility left is really multiple schlerosis and maybe Lymes which I’ve already tested negative for. I’ve had 2 sleep studies done. I knew that wasn’t it. Have reallly been unbelievably down and scared because we just can’t find anything. It’s been 14 months of hell I also was extremely in great shape physically, mentally and emotionally. Not anymore. This hit me suddenly a month before my 50th birthday. My life is completely gone and I am really looking forward to the day I get diagnosed with this or MS. I don’t want this because it sounds questionable and like you said it doesn’t sound “cool”. Well it ain’t cool. It has been unbelievably life changing and sometimes life ending. Anyway everything you said I can relate to. Never saw this coming. This is more than likely gonna be my thing. I will proudly and graciously accept this and be able to run off Into the sunset and enjoy my greatly altered life with much thankfulness. I just really hope I can get a quick diagnosis and move on to comfortably to the next chapter of my life. Thank you very much. I’m with you bro. Sorry for your Disease and change of life. Yiu are a great dude I can tell.

I was 13 when I got CFS ME after a previous infection. My parents made me homeless because I was 'crazy'. Now decades later I climb mountains (slowly) cos my inner 🤬 you saved my life. If people don't believe you, leave them behind if you can. I spent so long trying to convince people I cared about that this is real. Honestly, leave them behind. Their denial will ruin your health. Just cut them out. They'll deny it even when you can prove it so they don't have to feel guilty about what they did to you.

I wish I saw this so many years ago it could've helped me a lot, I have crps nerve disease but I think ME is just a part of many diseases because diseases are a myriad of symptoms and conditions together. Incredible video and I could relate to the "people think you're lazy or making excuses and everyone else gets better so why don't you?" Maybe crps really is ME mixed with traumatic injury and a little more but I'm seeing the similarities because the constant inflammatory response

True, I lost all my colleagues from work due to this, most neighbours who became even aggressive to me, my son doesn’t want to understand and my wife pushing me to tough work … feel completely gutted, only suicide looks like sensible solution for me, no cure or medicine for this illness, completely left alone till run out of money

Right on man! I have told quite a few people about your brilliant awareness video! I wana send you a bag full to the brim with energised spoons and with it wishing you go from strength to strength in the year to come! Keep making videos, i will watch and share - i was diagnosed when i was 26, 30 now - totally know what you mean! Younguns hehehe! In a weird way it does make us older in the soul, and really, appreciative of the slices of life we deem to be 'allowed' to live, however minute they are! Peace and love xxx

Thank you for this video, you have no idea how much I needed this today.

Thank you for putting this up! We are not alone!

I’m so happy to have ran across your video. It’s so refreshing to hear it from a man’s perspective as well. I am 25 and I have been suffering from ME/CFS for over a year now and it is hard. My symptoms fluctuate all the time which makes it even more difficult to manage. There are days that are better but I still don’t feel like my normal self. I was a very active person before I got ill and a part of me still can’t accept that I can’t do as much as I used to. This illness is so unpredictable. I have had people insinuate that it was “in my head” and it is one of the most hurtful things someone can say. Again thank you for posting this and spreading awareness. I subscribed to your channel!

Thanks for doing a video on this. I understand ME and CFS much more now

Thank you. This is exactly what I needed to find today.

Thanks for making this, well said. I wish more people could hear this

Thank you for this video, it came on my path at just the right time!

Wow, Thank you, Thank you, Thank you. As a mom W/M.E (19 yrs) w/ 2 adult son's, your video has helped explain this in a way they could understand. Thank you. 💕😊

just seen this brilliant piece. thank you Young man, telling it like it is... awesome.

Thank you for your straight talk. I'm by myself. It's just me and my 3 kids. Yes I to had a great job/life then my health went. I wish for people to understand and to support us. X

Exactly the words i needed to hear. Love your way of expressing and sticking up for all of us.

tears of gratitude. You are great XX