ME/CFS: Live Q&A August 22nd

ME/CFS symptoms, treatments, Chronic fatigue, brain fog, caregivers and more. Thanks for everyone who joined in the chat. Always great chatting with you guys!

[@KidCity1985]

Great to see you are booming with subscribers. It would be nice if Drs. Would watch and read the comments.

[@fight4me747]

Thanks! Im actually trying to interview some docs

[@elainamcreynolds4819]

Very practical. Thanks.

[@bobbiev7062]

Hi Johnny! Thanks again for another great video. I was wondering if you find meditation helpful. I've been getting back to medication lately and find it very helpful in grounding me throughout these uncertain times. Jon Kabat-Zin's book Full Catastrophe Living has been a great resource. It is geared towards informing people with health issues of the benefits of meditation and mindfulness. He is also doing a series with Wisdom 2.0 on KZbin during the pandemic. It has been very enlightening and inspirational to watch. All the best, and take good care of yourself! 😉

[@chihuahuapixieprincess2482]

Meditation, chanting Om really work along with living in the Now and knowing everything will pass; certainly stops me worrying 😊

[@jeremy1984100]

Are you able to hold down a job ? This has been an issue for me cant seem to do much of anything 😕

[@fight4me747]

Most people with ME/CFS can no longer work

[@jeremy1984100]

@@fight4me747 is this the case qith you as well? I'd like to hear yiur story sometime on this ,its a big burden on me right now especially having a wife and 3 kids that really on me...becomes depression and overwhelming thinking about the headache to get disability

[@randomskits1990]

Propolis and colloidal silver spray help with sore throat... provided that you don't have a bee allergy

[@MsKell35]

Missed your live, ty though Johnny as always. Since hearing about LDN on your channel and looking into it I got quite excited about it, but it's hard to get prescribed it over here. Il keep trying though. Love from London 🇬🇧

[@hummeldumm6072]

Same here in Germany! But it is worth looking for someone who is willing to prescribe it. I looked into LDN when John mentioned it and am taking it for half a year now. It works! I am using 2mg per day still. Sometimes I have to skip two or three days so all the receptors can get rid of it and it really works well. Of course I am far from being well but it improves my quality of life and I am thankful that Johnny takes on the effort to make all the videos to help other people. Good luck for you!

[@fight4me747]

So glad its working!

[@MsKell35]

@@hummeldumm6072 thank you for sharing this too. It's made me more determined to keep trying. Xx god bless you xx

[@chihuahuapixieprincess2482]

Lightheaded, breathless, palpations can obviously be anxiety however it could be Orthostatic Intolerance if it's only happening when standing. There's a NASA TILT TEST that can be done at home. I've stent 3 years trying to work out why I feel so well lying down (not including symptoms on symptomatic days)

[@pattic6077]

With diet do you do a more ketogenic or just lean meats veggies and fruits?

[@fight4me747]

Im mostly eating lean meats and fruits at the moment.

[@djVania08]

Btw - does the LDN have any side effects that you experienced? What dose do you take now? I am considering trying it but need to discuss it with my doc. He isn't familiar with that other than it's used for getting rid of addictions in higher doses. Thanks

[@fight4me747]

I had insomnia for about a week when I first started. I take 4.5mg. Hope it works for you!

[@BluejaytheJaybird]

Have you tried physical therapy for headaches, this worked alot for me

[@fight4me747]

I haven't but thats a good idea. Thanks

[@kimmyjedmonds]

What about juicing and smoothes?

[@fight4me747]

I juice a little bit, my stomach doesn't really tolerate it most of the time though. Many people with ME/CFS say its helped them though.

[@pattic6077]

Do you find it hard to rest enough? Not sure what kind of work you do but I have found work to be very stressful sometimes and then progress to fatigue.

[@fight4me747]

Most people with ME/CFS can no longer work, but for the fortunate ones that do, its vital to rest. Mentally and physically.

[@djVania08]

@@fight4me747 are you able to work anyhow? Or what is your day to day functioning. You never mentioned that.

[@pattic6077]

Fight4 ME I didn’t know they would let people have disability for ME yet because so many doctors don’t believe in it. I have it and some days are really rough. I’ve found I have other issues along with it like heart palpitations etc.

[@fight4me747]

@@pattic6077 I don't think palpitations are uncommon for ME/CFS'ers. I have that from time to time.

[@fight4me747]

@@djVania08 Im mostly unwell on a day to day basis. I try really hard to look/sound well in videos because I want people to see a positive message. Many times after the videos I pay the price and feel unwell. Sometimes even bedridden.

[@fedfin3869]

Hi Johnny, have you ever tried: corticosteroids, immunoglobulines, antivirals, IV saline, vagal nerve stimulation? If you did, what results did you have? Thanks, from a new severe me sufferer in Italy, country where this devastating condition has no support whatsoever

[@fight4me747]

I have tried IV, it helps a bit but very expensive in the States. I have tried Antivirals and they helped a little. Sorry to hear you are having a difficult time.

[@fedfin3869]

@@fight4me747 thanks for the reply, can I just ask what type of IV you tried? I meant IV saline specifically (it should help mainly for POTS though, but I've heard it helps with me/cfs in general)...it shouldn't be too expensive, just checking we're talking about the same thing