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ME/CFS: Live Q&A August 22nd
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- Опубліковано 21 сер 2020
- 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!
Very practical. Thanks.
Great to see you are booming with subscribers. It would be nice if Drs. Would watch and read the comments.
Thanks! Im actually trying to interview some docs
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 UA-cam during the pandemic. It has been very enlightening and inspirational to watch. All the best, and take good care of yourself! 😉
Meditation, chanting Om really work along with living in the Now and knowing everything will pass; certainly stops me worrying 😊
Propolis and colloidal silver spray help with sore throat... provided that you don't have a bee allergy
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)
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 🇬🇧
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!
So glad its working!
@@hummeldumm6072 thank you for sharing this too. It's made me more determined to keep trying. Xx god bless you xx
Are you able to hold down a job ? This has been an issue for me cant seem to do much of anything 😕
Most people with ME/CFS can no longer work
@@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
What about juicing and smoothes?
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.
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
I had insomnia for about a week when I first started. I take 4.5mg. Hope it works for you!
With diet do you do a more ketogenic or just lean meats veggies and fruits?
Im mostly eating lean meats and fruits at the moment.
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
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.
@@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
Have you tried physical therapy for headaches, this worked alot for me
I haven't but thats a good idea. Thanks
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.
Most people with ME/CFS can no longer work, but for the fortunate ones that do, its vital to rest. Mentally and physically.
@@fight4me747 are you able to work anyhow? Or what is your day to day functioning. You never mentioned that.
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.
@@pattic6077 I don't think palpitations are uncommon for ME/CFS'ers. I have that from time to time.
@@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.