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Back again RUclips sent you again👍🏻😊 ❤Yep 100% SO TRUE ❤Many Thanks J.❤😊

I’ve had this condition for 4 yrs , drs of all specialties and 2 primary care doctors, have not helped me 1 bit. They look past me because they have more patients waiting to be seen. If theres no pill to give you, they wont help you ! Sorry to say: its a do it yourself job to educate yourself and learn all you can! After such a waist of my time and copays , very limited healthcare benefits that don’t cover brand name meds or tele-visits! Then bloodwork for full metabolic panel was 1, 000.00 out of pocket! Im worse then ever today. Can’t sleep at night, I believe my husband is disappointed in me being in pain and tired all the time! He might not believe me! Whenever I try to tell him what is happening, he wont look at me or respond with support or thoughts. He will quickly jump on to another subject that has nothing at all to do with me! I’m so lonely and lost and don’t think there any choices for me as no one takes me seriously! They must all think its an act! 😢

I wish people could understand just how bad brain fog can be. I washed my hair twice in the shower the other day. I had lathered it up and then did it a second time thinking I hadn’t done it yet.

Insomnia with my ME/CFS is so hard. I could stay awake all day without a nap just so I can sleep better at night but I’ll still be awake all night. A lot of times I end up awake for like 38 or more hours

I wish I had family that wanted to understand :’)

Eating healthier might not cure you but it’ll help your health tremendously. Shouldn’t exercise when you’re having a bad day feeling weak and exhausted. If you’re feeling up to it, go for a walk and maybe some light exercise. Movement is good. I had a couple doctors tell me there was nothing wrong with me because nothing showed up on my blood test.

Heavy weighted legs, as if u have run a marathon, numbness, shooting electrical pain, burning , can have allat same time🙏❤️

Truth is always appreciated!!

💥💕💥💥💥💥Do you think Johnny about, let me take the title of a book it's called The body keeps the score. What it is basically about, it's too heavy of a reed for me, but it's about how people that have gone through a lot of childhood trauma, wounding, abuse as children for long periods of time that they get ME/CFS more than anybody because they get illnesses due to all that trauma and everything. I wonder sometimes but then on the other hand I say I have no idea I just know that I swam in a river I got a horrible virus and after that my life was never the same again ever. I'm so damn sick I feel like I'm dying all the time. Anyways I wonder how many people are willing in the comments to share Do you have any kind of mental challenges or mental illnesses I have COMPLEX PTSD and severe treatment resistant DEPRESSION. I'm curious how many people with this terrible illness we have also have mental illnesses as well. Johnny thank you for this I like these short disease that you're doing I really do because at first I didn't think I'd like it that I wanted it to be more meaty but just getting these reminders is so validating and such a help from a peer that is suffering from the same thing you are. So have a great weekend or as good of a weekend as you can. And thank you for doing what you're doing.

When in my worst years, I would feel so tired that my instinct was to eat not only better, my larger amounts. And the feeling was that no matter what, my "body" was always starting. It is a hard feeling to describe.

Thank you for your videos. I just wish the people who really NEED to see them would actually WATCH them! xx

Another myth people believe- ME/CFS is just chronic fatigue. It’s a chronic illness not just a symptom. I don’t have long COVID or Lyme disease, I have ME/CFS. For some reason it can be hard for people to accept that you have ME/CFS. I don’t know if it’s because they don’t believe in it or if they don’t want to accept you have such a terrible disease.

PS.Again it only takes "that LOOK" from anyone & you know they just don't get it & just think...yeah yeah..me too get over it😢I don't leave the house now so fortunately no longer have to deal with this,but it really hurts when you're not taken seriously.Hang in there guys,closer every day for new break thru's❤😊

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Yep Everything you said & the just the LOOK you get by Drs & Specialists of ALL types in 2024!! 😢tells it ALL😲!! I don't try to explain/justify anymore,it sickens me.The Drs that p..s me off the most are those who ask for your general Medical History & don't know what ME is,then you say the full Myalgic Encephalomyelitis they don't/wont even try to break it down to work it out😡look at you like you're a complete idiot !! Thanks Johnny❤😊

I wish you could prove to some of the people who doubt this illness what people with ME/CFS go through on a daily basis I GUARANTEE they would wonder how we cope, I've had some of these comments said to me, you can see on they face's they don't believe you, this is very hurtful and upsetting in it self,tc all with ME/CFS

“Get more sleep.” I sleep twelve to fourteen hours a night and wake up exhausted. Then I am met with “You sleep too many hours and that is why you are tired.” After my cereal for breakfast I either go back to bed or to my chair to rest. The people closest to me understand, all four of them. Thank God for them.

ME/CFS and the sleep disturbance kept me focused on getting better sleep. I didn't know that it caused worse sleep. So I spent years chasing sleep.

#2 and #3 I’ve had people say these things to me. My boss even told me “I’m exhausted too.” Very non-compassionate!

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Important stuff. Thank you! ❤

I’ve been finally diagnosed with Post Covid syndrome, and the symptoms are so much alike. Everything is spot on what you said. Sadly I had to separate myself from some friends and family due to lack of understanding. But I’ve been able to cook for myself this week. Thanks for the videos!

Thank you 🌸

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Thank you!❤

You nailed it again Johnny ❤

Very important message....thank you 💜

🥀Thank YOU So much🥀

Thanks & for being so concise(which I can Never be🙄)spot on as always❤😊

I’ve heard every one of them by lots of people. My own dr. suggested that I exercise. She believes I’m sick but doesn’t understand fully what we all go through with exercise or just walking to the bathroom and back to bed while in a crash. I simply tell people have you ever had the flu? You don’t feel up to doing anything cuz you’re feeling so miserable. Well I feel that way 24/7/365. Next time you have the flu try exercising.

Sie glauben es oft nicht, weil wir nicht so aussehen … 😢❤

Thank you for this.

i think you need to also train people to understand, like with my mother if i say im too tired and she says why you havent done anything, i say its the illness. people need to get that your not ok

Thatnk you, ive suspected a family member of having EM😢, not officially diagnosed but from your list, i think most boxes are checked. With traditional medicine - im going to assume it will be a while until someone says it aloud.Im often accused of being insensitive but im not gonna give up, im gonna try to figure out how to make it better. It is frustrating to see them suffer and for me to say "I don't understand how you feel"because this is true, i dont know.

How long time this crush longs?

ORTHOSTATIC INTOLERANCE! and WAKING UP FEELING HORRIBLE! WHAT IS THAT CALLED? 😭😭😭😭😭

How incredibly informative and empathetic this video is..

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I'm in the UK and it's similar here. I got laughed at 2 weeks ago. I've called a health insurance company to help cover me as I may try to find a private doctor specialist instead.

Thank you for this video! 28 years and counting sick from ME/CFS. I was bedridden before I moved out of my moldy house. Now I am semi functional. I can take care of myself do light chores but can't work, socialize, engage in hobbies. In addition to mold avoidance I restrict calories and don't eat gluten which seems to help. Leaky gut sounds like a very likely hypothesis with my illness cause I am wacked out after meals. As I get closer and closer to mealtime my symptoms abate more and more. I also try to force myself to stay active during the day with the hope I will get 5 maybe six hours of unbroken sleep at night. I never believed diagnosing this illness was out of reach of CDC and NIH 28 years ago and I certainly don't believe that is the case today. They just don't want to loose face, get sued, face themselves in the mirror so they are going to perpetuate it as long as they can.

I've done it for 30 years without anyone, and anyone that came along was toxic and used me because I was so worn down. I'm still plugging along, but I'm tired of life......I have accepted that I'm in bed at home for my life. At least I finally have bought a beautiful home and beautiful gardens that I sit in all the time....I'm safe for the first time in my life at 59. Hard life...just waiting to go home.

Depression

Got it when i was 4, i can confirm, not a fun life. But somehow i made it to adulthood. But i 100% made it despite everything, not because of. Ty for this vid 💗

My Dr suggested I have this, not been well for a long time, with no apparent cause. Just watched this and relate to it so much. Crying 😢

I have POTS syndrome and I also have so many of these symptoms its debilitating

Hey Johnny! Just happened to catch one of your talks. Fibromyalgia could be used in place of ME in your description and the meaning would be the same! How I wish you and I were not experts in this disease we must live with, but we both are doing the very best we can! I am so so proud of you for teaching others about this! Keep on sharing your excellent information because it’s helping so many, including me! I love you and I love your mom! Give her a hug from me please!

ohmygawd... you mean the vertigo is also a symptom.... people, look, please, never tell someone with chronic fatigue that they just need to get more exercise. don't say it. just don't say it. you can't imagine how hurtful it is.

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Don't forget the emotional, mental and spiritual trauma that I heap upon myself daily because i can't function like everyone around me and can't live up to the expectations of those who see me as a normal human being, JUST LAZY. Nobody believes me when I describe my symptoms.