M.E./CFS: Live Chat |

#millionsmissing Live chat. #mecfs

[@victoriajackman2976]

Thank you Johnny, for your videos and encouragement. You are a bright light indeed. My husband was recently diagnosed withME but has been suffering with it for 6 years, perhaps even longer than that. As his wife and best friend, I am his primary caregiver, and I so appreciate any advice you've given on how important support is for sufferers with ME. I endeavor to be the kind of support he needs every day. Thank you for your advice and encouragement. It really means a lot. He took part in your livestream today, and felt much less alone. ❤ thank you 😊😊

[@lifewithspirit323]

Victoria, thank you for being such a sweetie to your husband. It is such a complex, difficult journey. One thing affects another, which affects another. Everyday you feel like you have the flu, along with jet lag. It is truly rough, so hang in there and make sure you get away and enjoy your life on the regular.🥰

[@Spikypotato.]

Victoria, it is heartwarming to hear how you view the situation and support your husband❤ I am sure it means the world to him. We can still enjoy the small things in life even with this difficult illness. Sending love!

[@sparrow646]

Thank you so much for doing this. It's heartbreaking for all of us

[@lifewithspirit323]

To my beautiful friends in this community, it is fine to just let the unhealthy competitive spirit pass on. Here’s something to consider: There’s really no reason to compete, if you have nothing to prove. You are awesome in and of yourself, just because you exist! Sure. Do everything to your fullest potential but not because of how you will look in someone else’s eyes, but because you want to make yourself proud of you! Peace, friends!❤

[@softspoken9867]

Thank you for your channel. God bless you

[@Spikypotato.]

Thank you Johnny and hugs to your mum❣️🫶🏼

[@catherineshepard4480]

What a great Mom you have!!! Blessed!! Sounds like a great woman!❤

[@susanphoenix74]

Thanks very much for your work. I know it must take a lot out of you. ❤

[@lifewithspirit323]

Raelan says that brain retraining programs do not work for everyone. I can attest to brain retraining NOT working for me. It provided some positive helpful exercises, but I was not remotely healed, even though I practiced the program with great fidelity.🌻

[@Anchor7]

I believe her “brain retraining” views are ridiculous. People dont have ME because of thought patterns. Just my opinion. Cheers

[@lifewithspirit323]

@@Anchor7 Anchor, I can only speak for my own experience. I won’t take away from someone else’s experiences. Blessings!

[@susanphoenix74]

I miss human touch amongst all the others

[@catchappie]

Yes, yes, yes, yes!!!

[@doreenlane9352]

I miss walking my German shepherd jazzmie also socialising visiting the Beach going garden centre visiting my friends going for a meal walking a round the shops and many more things hugs love to all fibromyalgia 28years M.E 18 years .

[@catchappie]

I am so sorry to have missed this! I signed up at the bell but didn't get the notification. Boogers! 1. From North Carolina. 73 yrs. ME/CFS just dx'ed. Sick about 60 yrs. 2. LDN worked great for two weeks and then my body went ballistic with side effects. :( 3. Summary of research suggests +/- 15% of people "get well". 4. Stay as positive as you can. Avoid negative people, critical people, people who don't believe you. 5. The bedridden times are tough. My heart goes out to you who are there. Hope you get break soon. 6. Yes, AVOID PEM! 7. To encourage research: write letters, contribute, be vocal, come here to get charged. 8. Google Scholar! KZbin medical and ME/CFS conferences -- GREAT INFORMATION! 9. NO BLAME. NO SHAME. NO GUILT. You did not choose this. 10. Protect the aliveness that feeds you, the love that nourishes you. Watch your boundaries. You're the boss. 11. Understand about other "self". We have two selves and we don't know who we'll be at any moment. 12. You are loved and treasured even if you are ill. You are a warrior. We are in this together. Hugs and love. JOHN: What was your career? Tell us about who you were during the "hair on fire" times. We are the "Hair On Fire" Club! I have maintained that there is something wrong with the neuro mechanisms that are the governors of our body systems like the car has a governor on the gas. We can't go when we want to go. We can't stop when we want to stop. Our body becomes the thing that regulates us. Your mom is a blessing to us all! You are a blessing to us all! Don't "Suck it up!". Instead, get on here and Suck Us UP and the energy and acceptance we bring.

[@lifewithspirit323]

Cat, I know YOU know what you’re talking about! Everything you just said is TRUTH! I haven’t worked in 5 years and am doing better than I was then. So thankful for any improvements. Wishing you all the best!💞

[@catchappie]

@@lifewithspirit323 You, too! We need to keep each other focused on the truth. We're not nuts. This is not Yuppie flu. We're not stupid. None of us are. When I was in front of the judge for getting disability, I'd been denied 3 times. That's normal. They want to weed out the whiners. At the hearing, the judge asked me if I had anything I wanted to say and I said something to the effect of: Yes, I have something to say. Who in their right mind would choose the way I feel for a measly few dollars? Before I got sick, I was working and thriving and enjoying life. I was physically very active. I had a good salary and a job I loved. I was in the middle of an industry and company that was exciting and exploding. It was thrilling to get up and go to work and find out what was new while I was sleeping. I enjoyed the interaction with my colleagues and I was intellectually challenged and stimulated. I had a busy social life and enjoyed my friends. We worked hard and we played hard. I used to feel like we were enjoying life to the fullest. If I could NOT be here in front of you pleading for assistance, believe me, I'd be up at Tahoe skiing or climbing -- I love technical climbing. Or I'd be out on my bicycle or hiking or running or tap dancing. I love tap dancing. Now I don't have the strength to watch Gene Kelly dance in "Singing in the Rain" and not fall asleep. I would not be here asking if I did not need help. Just being here today is going to lay me low for several days, a week, maybe more. Truly, I'd rather walk out of here and go to my job, earn my wages, and be challenged and stimulated by job, my co-workers, and my friends. I'd rather drive my car than be chauffeured, but after spending the day here in your court, I'm exhausted and I will pay dearly for this with my body.

[@sparrow646]

Your mom sounds wonderful.

[@fight4me747]

Thank you, she really is an amazing person.

[@annekilbourne]

Understand you must be starting to feel very fatigued after this video... I think you've done great though but yes sometimes we have to show ourselves when we're at our worst... most people wouldn't understand 😔 sorry I missed it live

[@crossercuss1]

thanks for the videos... just wondering as this was quite a long video did you at any point during the video feel that you were overdoing it?

[@fight4me747]

Yes. I basically took it easy the rest of the afternoon

[@Spikypotato.]

@@fight4me747 I fear it might feel a bit difficult for you to end the stream when we are all so happy to gather this way (the only way we can) and really appreciate your streams, but please know we all UNDERSTAND that you also need your rest🫶🏼❣️

[@painbrain1380]

Hey John, had a quick question for you, do you have comorbid fibromyalgia diagnosis as well? 👍 Thanks for your advocacy ❤️

[@LindaD02]

I love love that you did this live. It’s validating. I had to leave unfortunately and I wanted to add. Anyone dealing with this have you tested positive on a ANA blood test? Mostly for longhauler Covid. Also. My PT suggested mind set. Instead of saying I had to give up my treadmill for a recumbent Bike. Say I got a recumbent bike to ride. Instead of saying I could only do 5 min today say I did 5 min on my bike. Or I did dishes today. Etc. it takes the neg out of the equation. It’s the small things we tackle that make the difference. We are all fighting together. It’s validating to hear. Especially with long Covid and MECFS together. It can get so frustrating and isolating. Find a new happy place. Doesn’t always work everyday but if you can find new hobbies that are more realistic and when you are able to sit and do them it makes for a happy day. I have temper tantrums all the time but I try so hard to focus on positive things. I cry when I need to but I don’t stay there. Lick my wounds and say there are some worse off than me and they are fighting just as hard if not harder. I can do this if they can. I hope you continue to do these lives. Also. My PT said to me one day. You are not ok. But it’s ok to not be ok. Keep fighting and one day you might be ok. It may be a different ok than before but it’s ok to not be ok. Lean on your support. Even if it’s strangers because they understand better.

[@catherineshepard4480]

What is NAC?