M.E./CFS: News & Updates (Shortened)
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- Опубликовано: 5 сен 2024
- This vides is a quick update on the latest research/studies on ME/CFS for the month of August 2020
OMF: www.omf.ngo/20...
Solve ME Initiative: solvecfs.secur...
Sen. Ed Markey: www.gazettenet...
Full Version can be found here →→→ruclips.net/video/yuIIj4kF_nM/видео.html
🥀Quite unwell ,no words except Thanks so much🥀
Sounds hopeful.Thanks Johnny for always keeping us guys updated😊You're wonderful really appreciate All you do & youre research to share🔴Everyone we must ALL Remember Johnny HAS M.E.Too😢 & doing all his videos to help us in anyway😍Many thanks😊😊
Well said! People forget this guy is dealing with M.E. and struggles just like us on the daily. It probably zaps him making these even though its a few minutes. Sometimes he doesn't post for months because he is unable to.
❤❤❤❤❤❤Hi. Thanks for uploading this Johnny. I think it would be amazing and wonderful to change the name, Chronic fatigue syndrome. The reason I say that is it has no reality of what the experience actually is and it downplays how horrible this illness can be. When you say you have chronic fatigue syndrome to people they think things like, well, go take a nap or well I get exhausted we all get exhausted. And then there's this one the worst one I have ever gotten, and I always get it,.......... I would love to have what you have because you lay in bed all day and I would do anything just to lay in bed all day and watch videos. We all know if you really have this, in my opinion horrific disease, You're not laying in bed watching videos Yes it may look like that but you are also in agony so much pain and so many problems it just is way misleading to say you are just in bed all day relaxing ME/CFS is an illness that can affect any system in the body and it has done that to me. I have polyneuropathy right now my hands are in horrific pain they feel like they're on fire and they don't function well at all. I can hardly hold a cup of coffee for more than like 20 seconds before it just is too difficult and it will slip out of my hand. I also got polyneuropathy in my mouth. It was a 3-year journey of hell. My infectious disease doctor who is giving me very strong antibiotics for 3 years told me, all right it's over no more antibiotics You got to go get an oral surgeon and have a very deep surgery to get every root out. They're going to have to slice the gum because of the deterioration of the teeth down to the gum line but the root still there. I did get an oral surgeon. thank God he was great and I got a great anesthesiologist and the surgery took three and a half hours. So I'm toothless. I don't even care anymore this illness just has taken away my entire life. before I got it. I want to say to anybody that reads this that has this illness, that I'm with you, I feel you and I understand you. and, you are not alone and I really do feel sorry that you have to go through this. Let's write who we have to write I can't write but email whatever to anybody that's doing anything to further research and help find some type of treatment. For myself I don't think there will be a treatment from the standard medical point of view.I think it's going to be more of something like I don't know, what you eat or what you don't eat You know something that we're going to have to change that causes this to flare up. Thank you so much Johnny that at least you're making videos!! because it's good to see you upload very good.
Now I'm awake...yay not night time😂!! content has registered more,Very exciting & $60 Million that's Supper Exciting😊thanks so much J.😊
It's about time
Nailed it 🎉
Can count on around 30 symptoms with this illness head problems the worse the M.E can make you feel so ill and strange its more than just the tiredness it is about time the name was changed soon will be 30 years with it
im hoping you or someone can answer this question for me. ive had symtoms starting from 2019 and they include fatigue, brain fog, headaches, stiff muscles, heat intolerance, POTS, and more but my question is i can be totally fine for months with no issues at all almost like its finally "gone away" then it hits me like a rocket and all my symtoms come on at once and last for weeks/months before im back to normal. could this be M.E or is it somthing else because all my bloodwork and any test comes back totally normal and it makes me extremely depressed thinking im going crazy but when these flair ups happen its almost like someone is ripping my life away every single time and its so hard to deal with and its so hard to type this without crying. im currently going through one of these "flair ups" and i dont know how much longer i can handle it. if anyone who has ME/CFS reads this can you tell me if my issues match up with this condition its just so confusing because i can push myself for months with no symtomes and then they just come out of nowhere for weeks/months. any response would be really appreciated because over the past 5 years ive gotten no help at all
I believe it can, but usually if you "overdo" it, you get PEM (Post Exertional Malaise). That is a fairly exclusive symptoms tied to M.E. The problem is there are many other illnesses that overlap with M.E. You probably need to rule those out 1 by one. Maybe ask your Doc what illnesses have these symptoms and try to rule each one out. Unfortunately it can be tedious. Im not a Doc, I can only speak from experience.
@@fight4me747merkwürdig, aber es ist möglich, dass es trotzdem auch CFS/ME ist.
When they went woke i could tell they were not serious about science.
Who are you referring to? OMF?
What's the point?!
Whats the point of what? Research?