M.E./CFS: Quick Live Chat Q&A

[@happiness6177]

You're Amazing Johnny,really admire you for how you are helping us ❤"Millions Missing"❤ Most of us im sure are so isolated,lost all friendships,USLESS Drs & suffer a horrendous life,that can only be described here ,for me anyway as not on any media.Sleep well after this if YOU CAN!! an issue in itself❤😊

[@shepherd4406]

69 years with this illness and 55 years bipolar. It is quite a balancing act. I don’t get good days but feel blessed if I can have a few hours a day. I try to see my 87 year old mother with many serious health issues, once a week. We usually have an hour and then we both hit the wall. I rest two days before and one or two days after. Your channel has been a blessing. I have learned so much about my illness and myself and my past. It has been a struggle over the years to convince myself that I am not antisocial, selfish and lazy. I have been lucky in that my mother has always been supportive. My step-father doesn’t understand at all about my illnesses. That has been a challenge. I am blessed that I can function and I seldom have episodes of pain.

[@petewhiston9880]

Yes thank you very much for the live chat. It's reassuring to know we are not alone. 💝😁

[@bethlinderman-jz9gr]

I’m so sorry I missed the live, I even set a reminder 🤣🤷🏼‍♀️. Thank you again for all you do & hope you are well & able to do another soon. I agree that supporting one another through this is so helpful & needed! ❤️

[@Navymom77]

I so appreciate ur podcast, this is a lifeline!!! So grateful have found you! Blessings 💞

[@AlbaLynxQueen]

Nausea is a huge issue for me too. 😮

[@CricketGirrl]

Woke up in a crash. So sorry I missed it! ❤

[@kbear2478]

🥀just watched replay.Terrible we all have to try & live/survive with M.E but so reassuring to hear all comments.Found myself answering you all back😂& wasn't even live😂!!...."yes me too".Someone said they dont know anyone with M.E. & I've never realised even that,nor have I,so thanks for that.Your Channels great & certainly makes me feel better knowing us here,are all the same/variables of course,care & understand M.E.🥀Many thanks Johnny hope to catch next live chat🥀Especially hope youre recouping a little after live chat🥀

[@kbear2478]

🥀thank you,will definitely watch later,slept thru notification!! 🥀

[@andeebee2530]

Sorry I missed the live but it’s great to see it now. I love your videos. You always explain things so well. Thank you for everything you do, and thanks to your Mum too 🥰

[@lynnegrin9165]

Thank you for the live chat.

[@crossercuss1]

damn i missed your live.. would be great if you can do a video about your typical day with m.e

[@BobbysWorld_of_Art]

Ironically I missed this because I fell asleep. Watching now from Norway 🇳🇴

[@akcharly]

So glad u r doing this ❤

[@Andrei3342]

It’s helped me tremendously to hear your experiences and also talk on the matter.For now I am not 100% sure its ME as I am in the midst of testing for mitochondrial myopathy.I am lucky my neurologist wants to rule everything out before calling it ME but nonetheless the symptoms are really close to one another and from my understanding some research points to ME having a base in mitochondrial dysfunction. Thank you again for your advocacy!

[@damienb6184]

Aw man I meant to join but was stuck in andout of sleep all day 😅 *just MECFS things* hope I catch the next one!

[@happiness6177]

Hello everyone😊 I'm Worlds away from you all,but shoulder to shoulder understanding & relatating with Everything said. Currently & suddenly hit with feeling very down.Always been positive but I've finally made myself accept that I have to be realistic as Ive tried EVERYTHING.I've found aging with M.E.makes it more difficult to cope(sorry negative)ALL I want is to be able to interact with my BEAUTIFUL FAMILY.Im exhausted from being Positive for decades,lying in bed....KNOWING I'd Improve!! Homebound,mostly bedbound & Yes NO ONE DOES UNDERSTAND.Sorry, I fell asleep 20mins before you started!!! Thanks Johnny, you make me feel happy,understood & like you're a friend,that means so much❤ I will be following you til I go😢😢All the best to us ALL & for break thrus of ANYTHING that can help even one of us🍀😊

[@bas3374]

Ich verstehe dich ❤ 👍 Grüße aus Deutschland 🇩🇪

[@fight4me747]

Danke fürs Zuschauen und Hallo!

[@happiness6177]

​@@bas3374😊👌😊

[@happiness6177]

​@fight4me747 😊👌😊

[@Franco-wo7xb]

Wanted to say hi and thanx..missed the chat been very fatigued & not well at all...wrote this too stay connected on ur channel & fellow me/cfs sufferers its a llife line..TY for all that u do Johnny👍 (Hi to everyone) its a lonely brutal illlness.

[@donnahall104]

I'm back I'm sorry my thanks keep doing the chat Great idea..sorry😢

[@happiness6177]

NOOOO.........Have I missed it😢😢OMG...😢😢😢???

[@fight4me747]

I will do another soon 😀

[@happiness6177]

@@fight4me747 😊😊❤😊😊

[@kimrose80]

Uggh I’m so disappointed I missed the Live chat because of brain fog 🤦🏼‍♀️ but glad I can at least watch now..

[@fight4me747]

no worries, I will do another one soon

[@happiness6177]

**Hi All😊Can anyone help me PLEASE.Is it known/heard of as a Symptom of people with M.E,to be unable to produce CORTISOL?? = Req.cortisone etc meds.to vaguely function & also prevent Adrenal Crisis.Thank you😊Random question I Know,didn't know who else to ask.Thank you😊

[@seanvogel8067]

I’ve seen research somewhere (on KZbin) that said me/cfs people have a wrong rhythm for cortisol. Too low in morning and too high at night and possibly other disregulations. Sorry it has been a while and I can’t remember where I saw that. i’m not sure how helpful that is.

[@happiness6177]

@@seanvogel8067 Thank you so much.I was here now,just about to delete my comments I've left re this,here & also Johnny's following vids.No ones commented so I thought it must have been a dumb question.Greatly appreciate your reply & efforts😊Do you have ME.also?? I hope not😢

[@seanvogel8067]

@@happiness6177 , yes, I do. Mild to moderate. I am looking into LDN (low dose naltrexone). It might help with the fatigue.