Dr. Stein's Real Talk on Getting Through ME/CFS

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  • เผยแพร่เมื่อ 25 พ.ย. 2024

ความคิดเห็น • 132

  • @IridescentJen
    @IridescentJen 9 หลายเดือนก่อน +41

    Red light and carnivore diet are the only external things that made a difference for me in almost 10 years of severe mecfs (mindset being the main piece of the puzzle). Tens of thousands of dollars in supplements, meds, therapies, doctors and holistic practitioners, and every diet/way of eating imaginable. All the things that worked for others had no impact (or caused unacceptable side effects). I've tried All the Things and the most expensive protocols. It was a simple red light that reversed years of insomnia and an upside down vampire sleep schedule - even getting restorative sleep now most nights. Carnivore isn't for everyone but for me it was a game changer plus it makes it easy to stay away from sugar and carby things that increase my fatigue. Focusing on good fat and protein is addressing years of undereating and malnourishment. But I couldn't have done any of that without the red light and starting to get some actual sleep. Nothing works when sleep is broken. I'm walking again, got a car and am driving a bit and slowly starting to get out in the world again. (Red light also made a significant impact on horrid endometriosis flares)

    • @sarahmaurice3930
      @sarahmaurice3930 9 หลายเดือนก่อน +4

      That's so interesting about red light and endometriosis pain!

    • @IridescentJen
      @IridescentJen 9 หลายเดือนก่อน

      @@sarahmaurice3930 It was a totally unexpected side benefit! I had been miserable for years, having 10/10 pain level flareups every few weeks, went to the ER several times but realized they couldn't actually help. The hormones and birth control pills they tried to treat me with gave even worse side effects. I was in a very dark hopeless place with it, on top of disabling me/cfs. Just a few weeks into using the red light it started easing up and within two months the endo was gone (or at least the pain was). Later I learned there is research of how beneficial it can be specifically for endo.

    • @revelation12_1
      @revelation12_1 9 หลายเดือนก่อน

      What is your red light protocol? Does it cause you to crash?

    • @IridescentJen
      @IridescentJen 9 หลายเดือนก่อน

      @@revelation12_1 no crashing, no PEM. I use a recommendations manual compiled by Michael Belkowski but it's generally just 10-15 minutes in the morning. Super simple. Twice a day if I'm feeling run down or needing extra support. I also do just a couple minutes at night before bed and it helps tremendously with sleep, even though officially red light is best in the morning for some of us it helps immediately with sleep.

    • @IridescentJen
      @IridescentJen 9 หลายเดือนก่อน

      My reply comments aren't showing for some reason so let's try again. No the red light doesn't crash me at all. Protocol is simple, 10-15 minutes in the morning. And a couple minutes at night before bed, it's immediately helpful for insomnia and deeper sleep when I sit for just a minute at night even though it's ideally meant to be used in the morning. Mike Belkowski has written a fabulous guide that collates all the research and studies done then turns into useful recommendations. Hope that helps @@revelation12_1

  • @neuroctopus
    @neuroctopus 9 หลายเดือนก่อน +12

    This was a breath of fresh air, more medical doctors on this channel please!

  • @SPIRITWILDCHILD28
    @SPIRITWILDCHILD28 9 หลายเดือนก่อน +22

    I am on year 13 of CFS. Mine comes in the same pattern as a period even though I'm 68. I think a uterus ablation and removal of my left ovary may have played a role. I didn't need the ablation the Dr. just wanted to add to the surgery. Left ovary was removed to ease colon pain when I ovulated on my left side. I've been unwell much of my life,, but CFS and now long COVID have really effected my life. I'm a lifelong dog rescuer with 14 dogs living in Panama, formerly of MI and AZ, US.
    I've watched many of your videos, now I'm coming back to re-watch them to heal myself. I am giving up watching true crime and most politics to help recover from a lifetime of fight or flight response. I shared your videos with a FB CFS group and several people attacked me saying you were fake and just peddling programs for money. I was so disheartened. Thank you for all your hard work and dedication. ❤

    • @CathyComora
      @CathyComora 9 หลายเดือนก่อน +3

      Maybe also look into The Gupta Program.

    • @PeaceIsYeshua
      @PeaceIsYeshua 9 หลายเดือนก่อน +2

      @@Patricia,
      Have you don’t parasite cleanses? With all the rescue dogs, parasites could be an issue. ❤

  • @lianpeet3502
    @lianpeet3502 9 หลายเดือนก่อน +7

    I really liked how Dr Stein encouraged self regulation and management. Great to hear from a doctor of all people!

  • @lindalock5065
    @lindalock5065 9 หลายเดือนก่อน +21

    Thanks so much for this amazing interview. Great to see a lady who is about the same age of me and who has been ill for decades (like me)! Thankfully she has recovered, I’m still on my journey! ❤

    • @judeandradez
      @judeandradez 7 หลายเดือนก่อน +2

      Yes me too! 35 years but I always believe I'll find a way out of it keep trying different things. Good luck 🙏

  • @dommccaffry3802
    @dommccaffry3802 9 หลายเดือนก่อน +11

    I bought a hooga red light unit as a direct result of a previous interview on raelan's channel. It was more than i could afford , and despite my best efforts it made no positive difference. It is problematic when people are desperate , and then they see people raving about things such as red light therapy, and the interviewees describe them as having been " gamechangers" or turning points etc. Let alone all these dozens and dozens of recovered (?)people now selling often expensive courses. Luckily i have no money left to waste.

    • @alexandrecouture2462
      @alexandrecouture2462 9 หลายเดือนก่อน +2

      100% agree.

    • @VagabondAnne
      @VagabondAnne 9 หลายเดือนก่อน +3

      Thank you for saying this, I will take that into consideration. I hope you are able to sell what you bought on ebay or similar.

    • @dommccaffry3802
      @dommccaffry3802 9 หลายเดือนก่อน +1

      ​@@VagabondAnne thank you

    • @thedancingdivaofdaviestree2320
      @thedancingdivaofdaviestree2320 5 หลายเดือนก่อน +1

      I relate, Don - watching all the expensive things people tried that don't work made me thankful I didn't have the money to spend on fancy products and programs! And it's true - what works for one doesn't work for all. Some people love and swear by red light therapy and far-infrared saunas, but neither did anything for me. Only the older cedar saunas did wonders for my pain. We're all different. Somatic tracking work is helping most people as it's the overactive Fight or Flight impulse turned on 24/7 that causes most of the symptoms, and old trauma and grief that becomes trapped in the body along with repressed emotion that cause so much harm.
      Learning to change from the Fight or Flight state to the Rest and Digest one has been vital to my recovery, plus trauma counseling and trauma work from Peter Levine's books. Daily somatic tracking for sensations and for emotions too is key, and those are free on TH-cam - which is wonderful for so many of us who lost jobs and became disabled for decades.
      I had ME/CFS and Fibro for over half a century - yet I've mostly recovered. Many things work for most people -- like journaling, meditation, turning trauma into creativity, shaking and dancing, Chi Gong, etc. But we need to take charge of our healing path, and find the right ways and people for ourselves, and that's unique and personal. Some people LOVE mindfulness meditation and swear by it - and I HATED it. For me guided meditation, Chi Gong, and yoga nidra work vastly better. Find what works for YOU, and keep doing it! That's how i got 80% better almost entirely on my own, mostly with library books and listening to my mind and body, and my intuition. (Plus getting OFF 5 useless medications including benzos.)
      Since I learned about brain rewiring and emotional release with somatic tracking, I have complete confidence I can recover fully! I love these stories and find them inspirational, and they help me during setbacks. Thanks, Raelan, always!

  • @katalinmcewan
    @katalinmcewan 7 หลายเดือนก่อน +2

    What an amazing human being! Someone who is compassionate and understands that so many people with ME are unable to work or work full time, therefore hasn’t got a ton of money to throw at things.

  • @geansaidh76
    @geansaidh76 9 หลายเดือนก่อน +9

    Thank you so much for having Dr. Ellie on. I took her course Pathways to Improvment some time ago and it certainly is one of the positive stepping stones on my journey. One of the things I liked and learned a lot from was our people's experiences and what worked for them.
    I wonder if everyone's perspective on this illness is their own, we can share some things experientially but it really is our own roe to hoe mostly based on what life has thrown at us.
    I'm now in my 70s and spent the first half of my life dissociated so learning what/how I was feeling was a real challenge once the slow onset of ME started.
    Some of the biggest game changers for me were learning about Naviaux's cell danger response, Stephen Porges' polyvagal theory and Raelen's interviews with Dan Buglio, Jason McTiernan, Jill Rothney, and Faith Canter, to name a few, because they all have some take on mindset and how important it is. One book that I found really helpful is The Expectation Effect by David Robson. I think the experiment that she mentioned is in it.
    Good luck to all of you out there, I hope you find what works for you.

    • @RaelanAgle
      @RaelanAgle  9 หลายเดือนก่อน +1

      Thanks so much for sharing your experience and insights, Margo! And especially for the book recommendation. 📚👍
      Wishing you the best on your recovery journey! 💪❤️❤️

  • @truthprevails7085
    @truthprevails7085 9 หลายเดือนก่อน +9

    Great interview and God bless this beautiful lady!

  • @roonbooks3227
    @roonbooks3227 9 หลายเดือนก่อน +1

    I applaude elle for admitting she's been wrong in the past. Sign of a true person.
    Elle, just so you know....in 1993 i was sent to a dr. Logan Stanfield in Calgary AB.he was one of the few environmentsl drs. That was knowledgeable about me/cfs...of coarse back then it wasn't called me/cfs.

  • @sarahdean6441
    @sarahdean6441 9 หลายเดือนก่อน +8

    Absolutely love this. Self management, which is a good job as my doctor apologised for not having anything to help me. We know so much more about our condition than docs. (UK). Some good doctors like Dr Will on your channel... saying that. Agree on paleo for many reasons (high nutrient foods, blood sugar balancing etc). Thank you once again ❤

    • @RaelanAgle
      @RaelanAgle  9 หลายเดือนก่อน +5

      Totally agree, Dr. Stein is incredible - we're definitely going to be hearing more from her soon! 🤞

    • @jog5289
      @jog5289 9 หลายเดือนก่อน +2

      I'm with a Functional and Integrative MD here in NZ and she advocates for a Paleo type diet too. (Unfortunately she prescribes mountains of supplements as well, and I can only feel benefits from one of them over the whole past 4 years that I've been seeing her.) Thanks Raelan and Dr Stein for this great conversation. 💛🧡💜

    • @regina6838
      @regina6838 9 หลายเดือนก่อน

      ​@@jog5289may I ask which supplement helped you?

  • @benxamin13
    @benxamin13 9 หลายเดือนก่อน +1

    I believe what Dr. Becca describes here is a crucial piece of the puzzle for all, but not necessarily the only one. Perhaps for some. Digestion for instance, is definitely influenced by our internal signs of danger, but also by tangible factors like our microbiota. And things like good relationships, proper breathing patterns, good sleep, need to be addressed directly before we can start allowing our body to move more. In other words, it's not always "just" the nervous system, but it's definitely a crucial piece.

    • @benxamin13
      @benxamin13 9 หลายเดือนก่อน

      how this message ended up under this video beats me...

  • @sarahdean6441
    @sarahdean6441 9 หลายเดือนก่อน +6

    Dr Stein's website and resources looks amazing 👏.

  • @lindaamendola1650
    @lindaamendola1650 9 หลายเดือนก่อน +2

    Havent looked yet; but VERY excited and grateful for Dr Stein is making it hopefully affordable🙏🙏🙏🦶🦶

    • @PeaceIsYeshua
      @PeaceIsYeshua 9 หลายเดือนก่อน

      @@Linda,
      Yes, if low income, she gives 50% off. I don’t know any other program doing that! ❤

  • @rigoelliot115
    @rigoelliot115 9 หลายเดือนก่อน +2

    This was great. I feel in my gut that this needs to be my approach as well.

  • @chooselife1242
    @chooselife1242 9 หลายเดือนก่อน +3

    Brilliant interview! Thank you Dr Stein, very inspirational!

  • @imunchienandalusia
    @imunchienandalusia 9 หลายเดือนก่อน +4

    I love this one. I've often said CFS is your "Check Engine Light" coming on - you have to pay attention to yourself and actively figure it out. Only you know where it hurts. It's different for everyone. For me meditation and diet are huge. Like the person below me, low-carb is the way. Also doing some trauma work to release old pain (meditation and yoga were key to even realize i was holding pain and tension in my body) - never tried red light therapy -supplements did nothing

  • @astorybookfinish5055
    @astorybookfinish5055 9 หลายเดือนก่อน +3

    I love my infrared wand. I think I’ll upgrade to a larger one.

  • @mariannehenderson5473
    @mariannehenderson5473 9 หลายเดือนก่อน

    I really liked the honouring of following and looking out for your own 'gut feeling' of what is right for you. Developing attunement and sensitivity to your self and renew the relationship . A sort of reparenting process. It is so easy to doubt myself as so often it's not possible to get immediate positive body feedback. That makes it sometimes confusing and challenging. But I do recognise the extra bonus it gives when you discover and experience you can truly be, and ultimately need to be, your own expert. Truly learn to eb sovereign. It's a bit similar like how doctors needing to trust mother's about their child's wellbeing. I love the image of offering a 'buffet' rather than a ten course meal. And indeed hearing all this from a medical doctor is so refreshing. I will have a look at all the links Dr Stein has offered. Thank you both.

  • @roonbooks3227
    @roonbooks3227 9 หลายเดือนก่อน +1

    Ive been looking for help since 1993.but really i got sick in a motel room in 1981.....But...i recently found out the homes i lived in growing up are now not allowed to drink the water from the tap due to lead pipes....in fact findings show my area has higher levels than Flint Michigan.That would probably explain why i failed grade 7 and 9 and dropped out of school.
    Just wanted to post in case it may help someone....and yes, i was properly diognose with ME/CFS...misdiognosis?perhaps

  • @mitdenken
    @mitdenken 9 หลายเดือนก่อน +2

    Thank you both so much for this encouraging and helpful interview.

  • @northernflicker1111
    @northernflicker1111 9 หลายเดือนก่อน +1

    Thanks for all you do! Excited for this one 💕

  • @Di-Pi
    @Di-Pi 6 หลายเดือนก่อน +1

    Thank you SO MUCH for this video. Now I KNOW I am not a hypochondriac❣️🎯 😭💔

  • @mirandaandrea8215
    @mirandaandrea8215 9 หลายเดือนก่อน

    What an amazing and Dr who is genuinely not in it for the profit!❤

  • @dinekedejong5855
    @dinekedejong5855 7 หลายเดือนก่อน +1

    Thanks

  • @nzurita86
    @nzurita86 9 หลายเดือนก่อน

    The milkshake experiment is 🤯. Really enjoyed the mix of scientific view with lived experience!

  • @juliehorsegirl
    @juliehorsegirl 9 หลายเดือนก่อน

    Excellent!!! I got goosebumps too!

  • @MC-mi4ck
    @MC-mi4ck 9 หลายเดือนก่อน +1

    Thank you for this interview.

  • @yoga-und-achtsamkeit
    @yoga-und-achtsamkeit 8 หลายเดือนก่อน +1

    Raelan, you are just wonderful! I love your humor, your generosity and your incredible commitment🙏🧡Thank you from Germany

  • @krosmon
    @krosmon 5 หลายเดือนก่อน

    Interesting about the red light therapy. I just ordered a portable red light wrap belt. It should be here in a few days. I am wondering if it is powerful enough. Price was a big object. I am an elderly lady who has long covid and cfs, but as the doctors and hospitals here in western Washington know nothing about it, I am gleaning all the info about treating myself from mostly your videos. I signed up with Curable but am finding that it isn’t the total answer, but it helps a lot. But working with my mindset has done more than I could have imagined so far. Getting over a lot of food issues and tge energy is starting to return a little. I will be interested to see how I respond to the red light treatment. Thank you for all your information!!!

  • @haraldsammer8862
    @haraldsammer8862 9 หลายเดือนก่อน +1

    thanks a lot for this amazing interview. Could Dr. Stein please elaborate further on what she meant with "reports on things which are far away from prime time"? Drugs, techniques? Many thanks in advance!

    • @RaelanAgle
      @RaelanAgle  9 หลายเดือนก่อน +1

      Great question, Harald! We'll have Dr. Stein back on the channel soon, and I'll add it to our list of topics to discuss.

  • @renaissance5300
    @renaissance5300 7 หลายเดือนก่อน

    great show

  • @kaistorring4851
    @kaistorring4851 9 หลายเดือนก่อน

    What a brilliant Interview.
    Which wavelength is effective for Long COVID Treatment??
    Thanks for answering !

  • @spruceysarah
    @spruceysarah 9 หลายเดือนก่อน

    Thanks to both of you for sharing your hard-earned knowledge!
    PS, Raelan: I love your sweater! Such a pretty pattern and color :)

  • @tanyawieczorek6603
    @tanyawieczorek6603 7 หลายเดือนก่อน

    14:52 this is so important! I need to tattoo this on my mind!

  • @trishvanroggen2893
    @trishvanroggen2893 9 หลายเดือนก่อน +1

    Brilliant ❤

  • @KatySimpsonLive
    @KatySimpsonLive 9 หลายเดือนก่อน

    What a lovely humble lady. There IS hope ❤🎉

  • @suesanson8876
    @suesanson8876 4 หลายเดือนก่อน

    Which red light therapy did Dr Stien use?

  • @tanyawieczorek6603
    @tanyawieczorek6603 7 หลายเดือนก่อน

    21:55 she mentions a Dr. Naveo's (unsure of spelling?) research, there's no link to this in the description, would someone please link to it? Thanks!

  • @CaLDwELLGoD
    @CaLDwELLGoD 7 หลายเดือนก่อน

    is ME CFS worse than long covid? i have long haul covid and im scared the stress on my organs, i wont last for another 5 years but if she has delt with this for 30.. makes me feel better. god bless her!

  • @regina6838
    @regina6838 9 หลายเดือนก่อน +2

    If supplement and drug protocols try to push our mitochondria to work harder and then we crash, is that cause of CRASHING after exercise (PEM)????

  • @FooziJr.1
    @FooziJr.1 9 หลายเดือนก่อน

    Hello Raelan! Is it possible to listen to your content on spotify too ? Would be great :)

  • @dfinite1111
    @dfinite1111 9 หลายเดือนก่อน +2

    The doctor said that she was recommended “things like that”-What are the “things like that”?? Those “tools”?? That is what I need to know?

  • @efi4930
    @efi4930 9 หลายเดือนก่อน +3

    CAN WE GET ENOUGH RED LIGHT EXPOSURE BY NATURAL SUN EXPOSURE?

    • @alexandrecouture2462
      @alexandrecouture2462 9 หลายเดือนก่อน +2

      Yes and the sun is much more powerful than anything that anyone might sell

  • @LoobyLoo71
    @LoobyLoo71 9 หลายเดือนก่อน

    Is far infrared light the same as red light therapy?

  • @alisonbamford6723
    @alisonbamford6723 9 หลายเดือนก่อน

    I’ve had CFS/low energy for over half a century……
    I was 14. Now I’m 67……..

  • @tommyfeinstoff
    @tommyfeinstoff 9 หลายเดือนก่อน

    good video

  • @electrafyin
    @electrafyin 9 หลายเดือนก่อน +5

    if 17 things dont work try the 18th!!!!

    • @RaelanAgle
      @RaelanAgle  9 หลายเดือนก่อน

      💯

  • @legohouse4819
    @legohouse4819 7 หลายเดือนก่อน +1

    I love Dr Stein however in a different interview she gave a huge nocebo to a person who asked if fatigue can be addressed with mind/body approaches and she said she didn't think so. So sad and so disappointing. You could tell the person was devastated.

    • @tanyawieczorek6603
      @tanyawieczorek6603 7 หลายเดือนก่อน

      Have you a link to that?

    • @RaelanAgle
      @RaelanAgle  7 หลายเดือนก่อน

      So sorry to hear about that-sometimes words don’t come out as intended. 🙈

  • @efi4930
    @efi4930 9 หลายเดือนก่อน

    🌹THANK YOU

  • @Di-Pi
    @Di-Pi 6 หลายเดือนก่อน

    35 yrs. here. 1988 so-called “Cambodia Flu”, lots of jabs. Then Cooties 19.

  • @theantiqueactionfigure
    @theantiqueactionfigure 9 หลายเดือนก่อน +5

    Red light therapy did nothing for me.

    • @dommccaffry3802
      @dommccaffry3802 9 หลายเดือนก่อน +4

      Me neither

    • @larsstougaard7097
      @larsstougaard7097 9 หลายเดือนก่อน +3

      It didn't help me either

    • @ingathomas6653
      @ingathomas6653 9 หลายเดือนก่อน

      For me neither at the beginning but now coming to the end it makes a difference. Maybe in a critical stage we cannot feel it as passes are so tiny?

    • @dommccaffry3802
      @dommccaffry3802 9 หลายเดือนก่อน +1

      ​@@ingathomas6653thank you for comment ; what do you mean by " coming to the end " ?

    • @ingathomas6653
      @ingathomas6653 9 หลายเดือนก่อน

      @@dommccaffry3802 That I am already on 75 / 80%.

  • @fwdflashwebdesign
    @fwdflashwebdesign 9 หลายเดือนก่อน +6

    And now probably makes money from it... is like a pattern with this recoveries... get well and make money from it....

    • @LivingOnADime
      @LivingOnADime 9 หลายเดือนก่อน +1

      And GOOD FOR THEM for doing that!

    • @Nekonaa
      @Nekonaa 9 หลายเดือนก่อน +5

      Its completely nuts to me that people will suffer for years and then turn around and paywall support for people still trapped underwater. I'm too sick to work and cannot afford any of these programmes or functional medicine doctors, and i imagine most cfs sufferers are the same. We need to help and support one another, not take advantage

    • @pbmc_
      @pbmc_ 9 หลายเดือนก่อน +1

      In the same boat,and hard not to disagree with your statement. Trying to get red light on you when your laying in bed is helpful, also I have a portable sauna and sweating helps tremendously. The one food that helps me ,and makes me feel good is a good clean ice cream that's a superfood for me especially before bed.
      All the best and hope you come to some recovery.God bless!

    • @RaelanAgle
      @RaelanAgle  9 หลายเดือนก่อน +7

      There's loads of info and support on Dr. Stein's website, just look under 'Free Resources'.
      Also, you can watch over 130 recovery stories right here for free - everyone's doing their best to offer help. Did you catch the recent interview 'How We Overcame ME/CFS Together | Alexandra & Mona'? Make sure to sign up for the free support Zoom calls Alexandra host. There's so much free help available!

    • @AnneAlready
      @AnneAlready 9 หลายเดือนก่อน +4

      ​@@Nekonaa It's not the same as one on one support (for which most people do need to charge for their time) but there are many books which detail the same kind of techniques used in a lot of the support programmes. Lots available from the library even.

  • @alexandrecouture2462
    @alexandrecouture2462 9 หลายเดือนก่อน +3

    Not "vibing" with this one. She is not recovered at all, what is she doing here?

    • @revelation12_1
      @revelation12_1 9 หลายเดือนก่อน +13

      She said she had pretty much overcome PEM and can exercise for a significant period. For many I am sure this would seem like recovery and be a reason for celebration.

    • @seanm.collins9888
      @seanm.collins9888 9 หลายเดือนก่อน +3

      @@revelation12_1 but she had to retire from her profession to do these things?

    • @alexandrecouture2462
      @alexandrecouture2462 9 หลายเดือนก่อน +2

      @@revelation12_1 Recovery actually is recovery, with full energy back, not kind-of, sort-of better in some areas but not in others. Happy for her she's a little bit better, but this is not at all a recovered person, and not even near.

    • @ingathomas6653
      @ingathomas6653 9 หลายเดือนก่อน

      @@seanm.collins9888 She gave her new livestyle priority. I think that's a smart move.

    • @angelab1525
      @angelab1525 9 หลายเดือนก่อน +1

      I would positively be celebrating, feeling GRATITUDE for the recovery she has obtained!!
      This is encouraging for me, thank you- Raelan & Dr. Stein for giving HOPE!!
      🙏🙏🙏🙏🙏💗💗🙏🙏🙏🙏🙏

  • @germanside7890
    @germanside7890 9 หลายเดือนก่อน +1