Thank you for taking time to do this. It’s always fun and helpful. Thank you for keeping them short too I can only handle so much.❤ Praying for you and everyone with this disease continually Johnny.❤
Thanks for ALL you do helping everyone.You're so knowledgeable,kind & empathetic & can tell you're a lovely guy with knid nature😊I feel all who have M.E.are empathetic too, cos only WE get it!!THANK YOU❤😊
Ur a sight for for sore eyes Johnny...been/am very unwell at present.... wishing you all the best.. keep doing what ur doing for all of us without a voice who suffer from ME🙏
Another topic we can talk about that I’m really struggling with and probably so many others is not being able to work and lack of finances with this illness..This is really upsetting for me and I feel like life is passing me by and I feel so much guilt and shame 😔
I’ve become allergic to all cleaning products and fragrances. I’ve become so desperate i had 23 crowns/teeth pulled last week because i believe they’re contributing to my illness
1st off Thanks so much foryour videos,im only new & get so much out them.2nd.YOU Look Exhausted Johnny/John which do you prefer?? Look after YOU🍀So sad for you 2 hear you were only 20yrs ish when hit with M.E.I know how horrendous it is. Sorry missed your live chat.Always will prob.due to time difference.Just watched now👍🏻was great & I feel so relieved to hear most things you do/take I'm too,as have had for decades,but been my own M.E. Dr. now for many yrs = Terrifying!!! my Amazing 100% Deicated Dr passed away😢thank god he was ahead of his time with research & trials of treatments,if not id be in nursing home where know one would have a clue how to look after me,that is my no.1 dread!! = a terrible slow death.I AM VERY LUCKY,Still Severe,just coping tho❤😊
Thank you so much for this chat, Johnny. It's the perfect length. Can you please say your name at the beginning and ending of your videos? Like Sloan Bella says, "Hi, I'm (insert name) and then at the end, "And once again, my name is (Johnny) from Fight4ME. I think people can relate to our loneliness otherwise guys wouldn't say, "Well I'd kill myself if that happened to me." Yeah.... but see, then you'll be told by God, "You'll just have to go back and live through it all again and make a better decision next time." Uh.... no way. I'll just take feeling lonely for the rest of my life, thanks. Reducing carbs helped me greatly when my ME was mild. Once perimeno came on, I _had_ to add them back and I've gained tons of weight because of it. When I could do it, my gluten intake was definitely reduced. I don't think we can get family or other people to believe us when they're determined not to. I mean, Julie Andrews and Blake Edwards weren't believed by their Hollywood peers, and if they don't believe Mary Poppins (played by Julie Andrews) they're not going to believe me. So every day I say to myself, "Julie Andrews, Blake Edwards" a few times and it makes me feel a little better about all the naysayers. The Whittemore Peterson Institute found that the ME patients who had done the least amount of protocols and interventions (like drugs) were faring the best. And this is where we get beat up again because it can look like we've given up on attempting to get well when we're really just trying to preserve what little health we have left by First Doing No Harm. I feel like we don't need functional doctors since we have the internet and can do our own research and buy the products online at places like etsy. I still try new things but no more drugs of any kind, and by the way, the anti-viral Valcyte made me much worse permanently. More than anything these days I'm taking things out of my diet and protocol and that's helping me somewhat. I'll take some improvement over nothing, but I've had this all my adult life and I'm 60 so your strategy changes depending on your age and the severity of your Sx and how long you've had it (that you're aware of.) Those with a MTHFR gene mutation, may have trouble effectively eliminating toxins from the body. Those of us with a MTHFR gene mutation have a highly reduced ability to convert folic acid or even folate into a usable form. (Google) The Compounding Effect is an important thing to consider. Thank you for telling us about that term. I've only met two acquaintances who had ME and a few others who have Fibro in 60 years. No family, friends, or coworkers have ever had Sx like mine at all or any other illnesses like this. My best friend died of brain tumors at 45 and she was never really sick or in pain up to the end which I find to be astounding. SUPPLEMENTS: I used to be the supplement queen, now I can only take one daily Zinc - Vit. C lozenge B-12 lozenge Psyllium Husk. (However, I can only consume health food store psyllium, not Metamucil as that makes me sick too. Maybe it's because Metamucil is powdered, I don't know.) I use Kyolic Liquid Garlic and Bee Propolis Spray (which contains every vitamin except vit. D) I use herbal cough drops and syrup. Occasionally I use herbal tinctures like echinacea and oat straw. I used to take many different herbal tinctures daily but I can't do that anymore either.
I just had a receptionist who dismissed all my problems because she said, "I was just tired and not in a car accident." I need some home healthcare....or maybe stay in a hospital! What is the magic phrase to get proper care or support?
Please help, I was diagnosed with Pots , Ehlers-Danlos, Mass Cell. However I’m positive I have ME/CFS. because I can’t hardly leave my bed for 8 years, the only thing that gets me up is prescribed stimulants. Besides the heavy fatigue , the system that is the very worse is shortness of breath when I stand up or try to do anything. Is SHORTNESS OF BREATH a symptom you’re familiar with ?
Yes, shortness of breath can be/is common with ME/CFS. I read that ME/CFS is the only disease that has the post malaise symptom. Anyhow post malaise is a very typical symptom in ME/CFS. There are many other common symptoms, but post malaise is particular for this disease it seems. It is also not unusual to have individual symptoms, that not most with ME/CFS has with this condition/disease.
It is common to have POTS with ME/CFS too. If a doctor is not specialized in ME/CFS he/she usually has very little awareness and knowledge about ME/CFS. Something I have learned with this disease is to trust myself more than others. If you are certain that you have ME/CFS I believe you do, (but I of course don’t know). A doctor could diagnose me with chronic gastritis, tinnitus, “low thyroid production, etc, but it’s all part of my condition of ME/CFS.
@@SusanB-gh6wo I have all of those illnesses and ME/CFS. My ME/CFS actually triggered them. The Health rising website has some info to figure out if you have ME/CFS.
Susan, I am so sorry for your condition. I experienced extreme shortness of breath because I had h-pylori, a stomach bacterial infection, on top of my M.E./CFS. It also came with stomach pain and heart palpitations. So sometimes there are other conditions which cause certain symptoms. So happy that cured the h-pylori is finally cured after 4 years of trying to get rid of it. But I still have M.E./CFS. Be well, Sister.🌻
❤Please can ANYONE HELP ME ??? Hoping Johnny or anyone can give me tips what YOU do for a major CRASH?? Just been through horrendous medical situ & will start to have my 1st major Accumulative PEM CRASH ever & NO Dr.im my Dr😢. Ive Always acted fast if crash& recouped as best possible BUT this time its going to be BAD.Hence getting this in NOW. ❤😊 Wanted to comment on this vid.tho Johnny👍🏻but took ages ++ to do.
Well, laying on soft ice packs wrapped in a towel under my head, back, and/or neck helps me with a lot of the PEM pain in those places. A heating pad on my tummy. Just staying prone and listening to videos like Jeff/Mara podcast or audible can help. Keeping the room dark helps (background black lights for ambiance, safety, and the cool factor helps) Wearing shades indoors. I have indoor ones that are more lightly tinted. Think happy, calming thoughts. No FOG is allowed (Fear-Obligation-Guilt). Eating light meals throughout the day. Drinking tons and tons of water. Do not answer the phone or the door. That's all I can think of right now. Remember, this should pass and hopefully it will soon for you. 💙
Question: I’ve wanted to ask you this for a long time! I finally got diagnosed over a year ago. I’d say I’m moderate to severe. Found a doctor who believes himself to be a specialist in this! I’d been begging for help! When he told me”it’s your journey, you can get better if you really want to”. I was crushed. Putting it all on me, making it feel like it’s my fault!! I also have severe mental health issues & now I’m back out here on my own😪
I've done some research Re: That last comment. Empaths are much more susceptible to get CFS/ME. It makes sense 'cause it's a neurological disease, and much more women suffer than men.
I hate hearing people say "Just go outside get some sunshine". I know it's helpful, but when U have really bad anxiety, you can't even get out of bed, let alone out of your room, and then out of your house and into your yard. It's extremely difficult.
Thank you for taking your time and using your energy to make videos to help others!
Thank you for taking time to do this. It’s always fun and helpful.
Thank you for keeping them short too I can only handle so much.❤
Praying for you and everyone with this disease continually Johnny.❤
Thanks for ALL you do helping everyone.You're so knowledgeable,kind & empathetic & can tell you're a lovely guy with knid nature😊I feel all who have M.E.are empathetic too, cos only WE get it!!THANK YOU❤😊
Thank you so very much for having this live chat!
I have ME…life changing
Ur a sight for for sore eyes Johnny...been/am very unwell at present.... wishing you all the best.. keep doing what ur doing for all of us without a voice who suffer from ME🙏
I been following you love your videos ❤️
Thank you. I appreciated hearing you crash even though you’re pacing. I can feel like I’m doing it wrong.
Thank you so much for all your videos, much appreciated, I live in the UK so sorry I missed your live chat video take care all with ME Alan UK
When people find out about you... to the moon and back!!!
aww thanks
Another topic we can talk about that I’m really struggling with and probably so many others is not being able to work and lack of finances with this illness..This is really upsetting for me and I feel like life is passing me by and I feel so much guilt and shame 😔
Nooooo! I missed it!
will do another soon!
Definitely feel like you have tried everything!
I’ve become allergic to all cleaning products and fragrances. I’ve become so desperate i had 23 crowns/teeth pulled last week because i believe they’re contributing to my illness
It could definitely be the cause. I wish you luck!
1st off Thanks so much foryour videos,im only new & get so much out them.2nd.YOU Look Exhausted Johnny/John which do you prefer?? Look after YOU🍀So sad for you 2 hear you were only 20yrs ish when hit with M.E.I know how horrendous it is. Sorry missed your live chat.Always will prob.due to time difference.Just watched now👍🏻was great & I feel so relieved to hear most things you do/take I'm too,as have had for decades,but been my own M.E. Dr. now for many yrs = Terrifying!!! my Amazing 100% Deicated Dr passed away😢thank god he was ahead of his time with research & trials of treatments,if not id be in nursing home where know one would have a clue how to look after me,that is my no.1 dread!! = a terrible slow death.I AM VERY LUCKY,Still Severe,just coping tho❤😊
Sorry I wasn't able to make the live. Not sure what time you did this but I'm in the UK. Either nigth or day, I sleep a lot! Badly, but a lot. 😄😫
Yes, mu aunt had chronic fatigue and cousin but, they never got as bad as me. My mom and cousin both have fibromyalgia.
🥀thank you J.hope u r ok u look & sound very M.E.'d🥀
Thank you so much for this chat, Johnny. It's the perfect length.
Can you please say your name at the beginning and ending of your videos? Like Sloan Bella says, "Hi, I'm (insert name) and then at the end, "And once again, my name is (Johnny) from Fight4ME.
I think people can relate to our loneliness otherwise guys wouldn't say, "Well I'd kill myself if that happened to me."
Yeah.... but see, then you'll be told by God, "You'll just have to go back and live through it all again and make a better decision next time." Uh.... no way. I'll just take feeling lonely for the rest of my life, thanks.
Reducing carbs helped me greatly when my ME was mild. Once perimeno came on, I _had_ to add them back and I've gained tons of weight because of it. When I could do it, my gluten intake was definitely reduced.
I don't think we can get family or other people to believe us when they're determined not to. I mean, Julie Andrews and Blake Edwards weren't believed by their Hollywood peers, and if they don't believe Mary Poppins (played by Julie Andrews) they're not going to believe me. So every day I say to myself, "Julie Andrews, Blake Edwards" a few times and it makes me feel a little better about all the naysayers.
The Whittemore Peterson Institute found that the ME patients who had done the least amount of protocols and interventions (like drugs) were faring the best. And this is where we get beat up again because it can look like we've given up on attempting to get well when we're really just trying to preserve what little health we have left by First Doing No Harm.
I feel like we don't need functional doctors since we have the internet and can do our own research and buy the products online at places like etsy.
I still try new things but no more drugs of any kind, and by the way, the anti-viral Valcyte made me much worse permanently.
More than anything these days I'm taking things out of my diet and protocol and that's helping me somewhat. I'll take some improvement over nothing, but I've had this all my adult life and I'm 60 so your strategy changes depending on your age and the severity of your Sx and how long you've had it (that you're aware of.)
Those with a MTHFR gene mutation, may have trouble effectively eliminating toxins from the body. Those of us with a MTHFR gene mutation have a highly reduced ability to convert folic acid or even folate into a usable form. (Google)
The Compounding Effect is an important thing to consider. Thank you for telling us about that term.
I've only met two acquaintances who had ME and a few others who have Fibro in 60 years. No family, friends, or coworkers have ever had Sx like mine at all or any other illnesses like this. My best friend died of brain tumors at 45 and she was never really sick or in pain up to the end which I find to be astounding.
SUPPLEMENTS:
I used to be the supplement queen, now I can only take one daily
Zinc - Vit. C lozenge
B-12 lozenge
Psyllium Husk. (However, I can only consume health food store psyllium, not Metamucil as that makes me sick too. Maybe it's because Metamucil is powdered, I don't know.)
I use Kyolic Liquid Garlic and Bee Propolis Spray (which contains every vitamin except vit. D)
I use herbal cough drops and syrup.
Occasionally I use herbal tinctures like echinacea and oat straw. I used to take many different herbal tinctures daily but I can't do that anymore either.
I just had a receptionist who dismissed all my problems because she said, "I was just tired and not in a car accident." I need some home healthcare....or maybe stay in a hospital! What is the magic phrase to get proper care or support?
The problem with live q&a, is I’m in Europe so usually I try to sleep.
🥀love video & all info,thanks everyone,sorry i not comtribute🥀
Please help, I was diagnosed with Pots , Ehlers-Danlos, Mass Cell. However I’m positive I have ME/CFS. because I can’t hardly leave my bed for 8 years, the only thing that gets me up is prescribed stimulants. Besides the heavy fatigue , the system that is the very worse is shortness of breath when I stand up or try to do anything. Is SHORTNESS OF BREATH a symptom you’re familiar with ?
Yes, shortness of breath can be/is common with ME/CFS. I read that ME/CFS is the only disease that has the post malaise symptom. Anyhow post malaise is a very typical symptom in ME/CFS. There are many other common symptoms, but post malaise is particular for this disease it seems.
It is also not unusual to have individual symptoms, that not most with ME/CFS has with this condition/disease.
It is common to have POTS with ME/CFS too.
If a doctor is not specialized in ME/CFS he/she usually has very little awareness and knowledge about ME/CFS.
Something I have learned with this disease is to trust myself more than others. If you are certain that you have ME/CFS I believe you do, (but I of course don’t know). A doctor could diagnose me with chronic gastritis, tinnitus, “low thyroid production, etc, but it’s all part of my condition of ME/CFS.
@@SusanB-gh6wo I have all of those illnesses and ME/CFS. My ME/CFS actually triggered them. The Health rising website has some info to figure out if you have ME/CFS.
Susan, I am so sorry for your condition. I experienced extreme shortness of breath because I had h-pylori, a stomach bacterial infection, on top of my M.E./CFS. It also came with stomach pain and heart palpitations. So sometimes there are other conditions which cause certain symptoms. So happy that cured the h-pylori is finally cured after 4 years of trying to get rid of it. But I still have M.E./CFS. Be well, Sister.🌻
@@lifewithspirit323 HELLO I’m so happy for you🎉🎉Is there anyway of contacting you about how you healed ME/CFS
My md / natural paths husband has lyme and only the test from japan found it 9 other bunk tests said no. 😢
❤Please can ANYONE HELP ME ???
Hoping Johnny or anyone can give me tips what YOU do for a major CRASH?? Just been through horrendous medical situ & will start to have my 1st major Accumulative PEM CRASH ever & NO Dr.im my Dr😢. Ive Always acted fast if crash& recouped as best possible BUT this time its going to be BAD.Hence getting this in NOW. ❤😊
Wanted to comment on this vid.tho Johnny👍🏻but took ages ++ to do.
Well, laying on soft ice packs wrapped in a towel under my head, back, and/or neck helps me with a lot of the PEM pain in those places.
A heating pad on my tummy.
Just staying prone and listening to videos like Jeff/Mara podcast or audible can help.
Keeping the room dark helps (background black lights for ambiance, safety, and the cool factor helps)
Wearing shades indoors. I have indoor ones that are more lightly tinted.
Think happy, calming thoughts.
No FOG is allowed (Fear-Obligation-Guilt).
Eating light meals throughout the day.
Drinking tons and tons of water.
Do not answer the phone or the door.
That's all I can think of right now.
Remember, this should pass and hopefully it will soon for you.
💙
@@websurfer5772 Just woke THANK YOU SO MUCH for reply & u effort very kind❤😊
Question: I’ve wanted to ask you this for a long time! I finally got diagnosed over a year ago. I’d say I’m moderate to severe. Found a doctor who believes himself to be a specialist in this! I’d been begging for help! When he told me”it’s your journey, you can get better if you really want to”. I was crushed. Putting it all on me, making it feel like it’s my fault!! I also have severe mental health issues & now I’m back out here on my own😪
Let the Doctor know that the CDC estimates that only 1-3% of people fully recover and there is no known cure.
I've done some research Re: That last comment. Empaths are much more susceptible to get CFS/ME. It makes sense 'cause it's a neurological disease, and much more women suffer than men.
I hate hearing people say "Just go outside get some sunshine". I know it's helpful, but when U have really bad anxiety, you can't even get out of bed, let alone out of your room, and then out of your house and into your yard. It's extremely difficult.