ME/CFS for 4 Decades: Catherine Johns Fully Recovered at 75!

[@catherinejohns7080]

Thanks so much for lovely comments everyone! I forgot to mention that on the day I described to Raelan I meditated for 40 minutes, as I do every day. It's so important to me, but there were a lot of years to cover in one interview! Thanks to Raelan for her incredible work too.

[@DoraH-o5x]

Can I ask about your meditation. Was it visualization or basic awareness or affirmation or.......so many options? And thank you for your interview with Raelan.

[@hadarovsky]

Thank you so much for modeling such amazing resilience, you really give me hope ❤

[@tanyawieczorek6603]

Catherine, was there one specific method of meditation that helped you most? Or one specific video? Thank you for your reply.

[@theshilhuette8964]

I did meditating for 45 minutes the other day. Couldn't fall asleep that day had to take sleeping pill. Apparently it gives me mental PEM.

[@tanyawieczorek6603]

@@theshilhuette8964 wow, never heard of this.. thanks for the warning

[@alisonbamford6723]

I lost much of my energy as a young teenager in the early 70’s & have dragged through the last half century - not bedridden but with very low energy. A doctor at a large hospital in London told me after tests in 1977 that there was nothing wrong with me & I was basically bone idle. I am slowly gathering the tools & information to try & reverse my ‘Sympathetic Dominance’ which has affected not only my energy levels, but also my digestion, my sleep, my state of mind & my well-being for well over 50 years. I’ve tried diets, drugs, remedies, herbs, supplements, etc, with limited results & have spent a fortune into the bargain. I guess if I hadn’t, I might have been worse off, but who knows……? I’ve never been able to cope with stress……. This experience is inspiring. Thank you.

[@dr.harnet466]

Dear Catherine, what a beautiful story. And after having been ill for so long, you look so young, glowing, and beautiful. Thanks for sharing and I hope you live life to the fullest!

[@Truerealism747]

They do say CFS when we do get better we look younger well I suppose we haven't had environment Al impact to

[@catherinejohns7080]

Thanks Dr. Harnet

[@valoriechapman5370]

I'm at the 35 year mark of chronic illness. I've tried so many things that it is crazy! I'm so grateful to finally have a place to find hope and to be able to relate to others who know exactly what I'm going through!

[@catherinejohns7080]

Yes Valorie, never give up!

[@BennyBoy925]

Thank you for this interview. As a mother I feel guilty so many times for being sick and for my son to have to experience this trauma. Those stories inspire me to keep going and believe that I too can heal and I will heal.

[@dfblake7]

God bless all of you, who like me, are searching for a gem in this story so we can be present with others this holiday.

[@catherinejohns7080]

All the best in your recovery journey and happy holidays!

[@annahakkenberg]

This woman radiates gratitude and joy, she has just such a kind and lovely energy, just looking at her makes me weep! I am so happy for her to have found relief after such a long journey. She inspires me!!

[@mathmama5172]

The best interview what a sweet lady. Raelan.. your mother would be so incredibly proud of you for what you do for this community

[@nolamayer4101]

Thank you both so much for this interview. At 65 and 28 years “in” it is so inspiring to hear stories such as Catherine’s. What an amazingly strong, determined women who never gave up even after being told at 31, “ it’s all over red rover”. Wishing all the very best Catherine 🥰🎄🌹🤸‍♀💃

[@catherinejohns7080]

Thanks Nola!

[@nolamayer4101]

Merry Christmas to you Catherine. I live in the Dandenong Ranges so if you are ever up this way and would like to catch up for a coffee let me know. Enjoy your day 🎄🎄

[@Gina-jb3cg]

Thank you so much Catherine and Raelan. Im also an Aussie, nearly 66 and still on my journey of healing, with some "remissions" over the years. This was so encouraging as I sometimes lose hope as I'm getting older that full recovery is possible. Ive been unwrll with CFS for over 35 years. Ive done a couple of recovery courses and have improved significantly but still feel quite limited. Thankyou for the boost to my heart and spirit to continue to move forward gently and kindly in recovery.

[@catherinejohns7080]

Just keep going and be kind to yourself Gina, you can recover, there's no set time for this, it takes each of us as long as it takes.

[@Bepike]

Thank you Catherine and Raelan. I’ve been hoping to see some recovery interviews with Boomers. Please do more if they’re out there! Congratulations to Catherine, many thanks to you, Raelan, and Merry Christmas!

[@catherinejohns7080]

Thanks, and the same to you!

[@maryandmartha]

I love this interview! It gives me hope after having FM/CFS for over 40 years! I'm nearly 60 and I'm taking Dan's ANS Rewire program. I agree with how Catherine described the program and it is helping me on my road to recovery. Thank you for this great interview! Raelan, I hope you take a break over the holidays!

[@catherinejohns7080]

Keep going Mary you will get there, one day at a time!

[@anitapaul230]

Good luck. It needs energy to follow these reprogramming programs

[@maryandmartha]

@@catherinejohns7080 Thank you!

[@albinuta4232]

What is FM/CFS?

[@anitapaul230]

@@albinuta4232 Fibromyalgia and Chronique Fatique Syndrom ( ME/CFS)

[@regina6838]

Congratulations on being a writer. Your goals and dreams definitely helped keep you afloat all these years. ❤. Youre so sweet and lovely. I really liked what you talked about at the end about forgiving yourself and overcoming guilt.

[@catherinejohns7080]

Thanks Regina!

[@esthercave8111]

Godbless this woman, so strong and resilient. I was losing hope after 8 years of this illness but will keep saying that recovery is possible now. Its so so hard.

[@katjaloose1365]

Simply wow...thank your for sharing and spreading hope Catherine and Raelan❤all the best to everyone!

[@miriamchristinhuish9930]

Thank you dearest Catherine and Raelan. Very inspiring and giving me hope ❤

[@chellisherwin924]

So inspiring, thank you

[@catherinejohns7080]

It was my pleasurel Keep going, anyone can recover!

[@stevebarlow1959]

Wonderful interview! Congratulations to you Catherine on your recovery journey. Your eloquence and wisdom are inspiring. And to you, Raelan, I am privileged and grateful as a person with ME/CFS of some 1.5 years now, to be going through this with someone like you in this challenging world offering all this support, love and dedication to the global chronic illness tribe. You literally save lives! Sending peace and goodwill to both you and Catherine for this Xmas season.

[@catherinejohns7080]

Thanks so much Steve, and the same to you!

[@doug-s9t]

Yes never give up, there is always hope for improvement or recovery. What I have learnt is believe in myself that I can get better, listen to inspiring stories of recovery, do some exercise, have a healthy diet, think positively, have goals and meditate all help

[@catherinejohns7080]

No never give up!

[@thedancingdivaofdaviestree2320]

It can actually be harmful to think positively all the time IF you're bypassing or repressing emotions. Somatic tracking teachers explain that repressed emotions are behind many of our health problems - from CFS/ME, fibro, and Long Covid all the way to cancer. Yes, be upbeat and hopeful, do gratitude lists and believe you'll get well. But feel the full spectrum of your emotional rainbow in a healthy way! All our emotions come for a reason, and our bodies can be trying to tell us there's something vital we need to change. I'll give you an example. I had a migraine headache for the first time in decades. I stopped pushing through and asked myself, "Who or what is a pain in the neck?" Immediately I realized, "Oh, HER." I had a business meeting with someone which was important financially and seemed on the surface to be beneficial to me. But I realized I didn't trust her, and as I thought about it, she reminded me of 2 people who'd ripped me off! I wrote a letter cancelling the appointment, said, "Thank you, subconscious and body/mind - you were right!" And sure enough, the headache disappeared in 10 minutes, just faded away! Sitting with the sensations of discomfort helped more than pasting a positive face on it and thinking "It will all work out!" So that's my story. I've done that too - I'm the Queen of Silver Linings - and I learned often I'm hiding from emotions or situations I don't want to feel or confront. When I do, often symptoms and sensations fade. But I've already healed by 80% mostly on my own, by listening to my inner wisdom and intuition, and quitting all medications! There's more to heal - but the view from the mountain I've climbed already looks pretty great! Best of luck, and may we all heal 100%!

[@jaida9254]

Great content Raelan. It's so inspiring to see that people can heal despite having little or no help from the medical profession. What a lovely woman Catherine is and she looks amazing. Sending lots of love to her daughter, son-in-law and all those going through illness, especially those facing this alone.

[@catherinejohns7080]

Thanks so much Jaida! All the best with your recovery journey.

[@RMe1137]

Catherine, so happy for your recovery!!!!! This light has been remarkable for getting my circadian rhythm back in track to get up early and go to bed at a regular time. This brand is backed by research and was recommended by my doctor. I’ve stopped using it and within a few days of restarting my rhythm is back on track. Carex Day-Light Sky Light Therapy Lamp - 10,000 LUX Sun Light -

[@RaelanAgle]

Thanks for sharing such a great tip! 🩷 🩷

[@CorinnaWritingaway]

Dearest Raelan and Catherine thank you so much for this interview I cried so much out of hope throughout it. Dear Catherine what an amazing life story. I really appreciate you talking about your struggles and victories with writing (and congratulations on your novel!). I am struggling a lot to write it comes in ebb and flows depending on my capacity and what you said really encouraged me to keep going in spite of the difficulties. Thank you and wish you all the best 🙏

[@catherinejohns7080]

I'm so glad you feel encouraged Corinna, all the best for your recovery.

[@aimeemclean5244]

Thank you so much, Catherine, for sharing your truly inspiring story. I have been sick for just over 25 years and it gives me so much hope to hear that people are recovering after so long. I have tried multiple programs and am still hoping to find the right fit. I won’t give up! One specific question I have for you- what medication do you take that helps you sleep? Sleep is a huge piece for me. I recently starting wearing a sleep tracking device and it looks like I am only getting 10 minutes or so of deep sleep each night 😢 Not surprising as I awaken so unrefreshed. Any help would be greatly appreciated! Thanks so much again, to you and Raelan for giving us all so much inspiration ❤❤❤.

[@elsmeyer7406]

Same here. Sick as from 2000 and have done 1001 therapies, paid by the insurance and the most by myself. I dont lose hope, but have no trust in my body. Sick all days and sleep is terrible. Did benzo's for more than 20 years but now in tolerance, Hopeless. Love these podcasts, just disovered them. Good luck to you all!

[@elsmeyer7406]

haha thats typical ME. I was reading the comments on this post and thought; WOW, I can relate to this. Another person with a similar story...😎😜😬🤭

[@jog5289]

@@elsmeyer7406 I've done similar. Lol

[@JihongLi-v4j]

Hello Raelan, your story encourages me to recover. Thank you!

[@catherinejohns7080]

Never give up!

[@AnnaVallin-Hogland]

Lovely and so inspiring interview❣️Thanks to both of you! 🌷

[@catherinejohns7080]

It was such a pleasure and an honour to be interviewed by Raelan!

[@chantellegus2069]

What an incredible woman. So inspiring! ❤

[@catherinejohns7080]

Thanks Chantelle! all the best with your recovery journey.

[@megm.c4026]

Wow. The horror of so many years struggle and pain to finally overcome CFS is so inspiring and so incredible. Well done Catherine. Youre a true survivour and a beam of hope to others who have been ill for so long. Every voice of hope makes a differnce.(Youre looking fab for 75 also).

[@catherinejohns7080]

Thanks so much, and we can all recover, it takes effort but we can get there.

[@sherrywarren-biers3327]

Greetings from Nova Scotia! Always believe in yourself, always have hope regardless of age or circumstances. Thanks so much for sharing this wonderful inspiring story of recovery! 😃💕😃💕😃💕

[@Jojorocks23]

Imho… It is hard to find doctors in Nova Scotia who listen, let alone treat pain without drugs. Good luck on your journey.

[@catherinejohns7080]

It was an honour to share my story on Raelan's channel Sherry!

[@jog5289]

Congratulations on your recovery, Catherine, and thank you for the interview, Raelan! I am just a baby at 7 years on this Chronic Illness journey! 43 years is certainly a long time! You are both inspirational! I know recovery is possible, I just haven't found the answer for me yet, but I will never give up! Best Wishes to everyone!

[@rebeccaledam7544]

Ohh Catherine, I'm so incredibly happy for you! After all these years ☺️❤️ I'm about 23 years in, I've done massive amounts of inner work, hoping one day I'll recover too. So inspired by you sticking to your childhood dream of writing a book, huge congratulations on completing it! 🎉 Could I ask what it is you're taking for your sleep? Sending you lots of love, Rebecca from Sweden.

[@trishcovich1923]

Amazing, so many are getting well, including myself. 💯 well for one year. Ten years of CFS. There are so many people with blocked emotion type stories. I'm so proud of you both. Happy to be interviewed here in New Zealand. ❤

[@RaelanAgle]

💯 well for one year - that's wonderful!! So happy for you Trish 🧡 🧡

[@trishcovich1923]

@RaelanAgle thankyou. Yes, I finally learned why I had CFS. I have an recording on KZbin if you feel like seeing it. It's put together by Simon Pimenta a CFS coach like myself.

[@dreamcreate116]

Thank you for sharing and so glad your doing well now Catherine. ❤

[@catherinejohns7080]

Thanks! It was a privilege to be interviewed by Raelan.

[@AnrupB]

Catherine, you are such an incredible example to all of us. Thank you for sharing your courage, strength and tenacity! ❤

[@catherinejohns7080]

Thanks Anrup, all the best for your recovery journey!

[@katyVander]

Ohh this is myself…nearly 70 MECFS since 30 BUT really goes back since I was born high stress & trauma from birth. Not recovered still really ill, housebound 4+yrs (again) bless you, you give me such hope I’ll become well. Thank you 🤗❤

[@catherinejohns7080]

Yes that does resonate with my story Katy, I know how you feel but I know too it's possible for all of us to recover. Just keep believing and never give up hope.

[@jocooper94]

This is great 👍🏻 Congratulations Catherine Raelan do you have any recovery stories from ladies that had CFS and went through the menopause please? 🙏 thank you for all you share ❤

[@alexandrecouture2462]

Great interview! Merry Christmas everyone here!

[@catherinejohns7080]

Same to you Alex!

[@anoukgoosen2109]

Thank you for the blessing of your healing experience and sharing your healing yourney ! 🙏🤲🌟🪷✨

[@catherinejohns7080]

It was a privilege to share my story with Raelan and everyone who might see the video.

[@majahorvat7294]

Catherine, well done for recovering after all these years!

[@catherinejohns7080]

Thanks, and best wishes for your journey too!

[@alicerees5134]

What a truly inspirational lady! Thank you for sharing your story, I couldn’t imagine your pain for such a long period of time. You are incredibly strong, beautiful and inspirational. May I wish you a beautiful, peaceful life 💜

[@catherinejohns7080]

Thanks so much Alice!

[@rsalbatros]

Great to hear :) ❤❤❤

[@esther7867]

Thank you both, you seem like an incredible person Catherine! I'm on quite a journey as well, I have pretty much overcome long covid, but already had some degree of chronic fatigue before that as well as type 1 diabetes. Not many recovery stories of the latter but I want to recover from that as well and don't seem to be capable of giving up 😉. So I keep on trying and hope that one day I can share that story to inspire others as well!

[@AnneAlready]

All the very best to you Esther.

[@catherinejohns7080]

Never give up Esther, you will make it, one day at a time!

[@sveinungskarset2329]

So thankful for this intervju!🙏🙏🙏❤️❤️ Realan and Dan Neuffer Are really helping me too on my way to recover. I am 65 now, and really belive that i also can recover🙏🙏❤️❤️❤️

[@catherinejohns7080]

Yes you can!

[@kj6542]

Wow❤😊Thank you so much for sharing ❤

[@catherinejohns7080]

IT was a pleasure and an honour!

[@danielamarinkovic2720]

Wonderfull story, so incourageing and coming from such a nice lady ❤

[@catherinejohns7080]

Thanks Daniela, all the best with your recovery journey.

[@jessicanilsson5941]

Thanks amazing ..i have Also this times i feel normal its amazing

[@JacquiQ]

ive had this 22 years and i am still trying ...

[@catherinejohns7080]

Be kind to yourself Jacqui, I was still trying to be a perfectionist about recovering,, but had to learn to accept where I am and not push too hard, like the perfectionist I used to be! You can do this.

[@kathydoell5571]

What meds helped you with sleep? Sleep is a huge problem for me.

[@mamatra1552]

The way she describes it sounds like DORA (e.g. Daridorexant). I've had sleep problems my entire life and currently waking up 10+ times/night. If you ever find a solution for yourself, hit me up!

[@dustington1]

What helped with my sleep was avoiding all sport of tea, soup, anything that derive from herbs after midday or even earlier

[@ezza1236]

If you don’t sleep well and you can always be tired, it’s really just getting ur sleep in order to recover no big deal :p

[@kathleendillon1572]

Try mirtazapine 7.5 mg, it’s an antidepressant but used off label for sleep.

[@LiseBenson]

I took Dr. Daly, from Charlotte, NC, sleep school on line. She is excellent! It was around $400 and in the middle of the course I began sleeping 8 hours. I did not try to get of the Restoril med totally but did reduce it by 10 mg. A couple weeks after the course concluded I began the journey with Long Covid, unimaginable to go on Long Covid journey without sleep! Love this interview so much.

[@enerjeffic]

My first ME/CFS symptoms showed up in Jan. '83, so I guess I got 13 months to get better within 43 years! But I'm all alone and barely surviving on poverty level SSDI so I can't afford to pay for any programs, in fact I can barely survive keeping life together at all. Even finding energy to "work on" recovery is near impossible.

[@catherinejohns7080]

Yes I know what that's like, but there are many free resources out there, I picked up a lot from Raelan's channel. You're not alone, never give up.

[@RaelanAgle]

I’m so sorry to hear how much you’re struggling-my heart goes out to you. I hope, little by little, you’ll find the strength to explore free resources like those from Dr. Schubiner or Alan Gordon, and when you’re ready, connect with the community for support. You’re not alone. 🧡 🧡

[@richardcerniglia8417]

Start watching Dan Buglio pain free you daily videos of safety. I found him when Raelan interviewed him last year. My CFS has decreased maybe 80% with this. Best of Luck in your healing 🙏💪

[@enerjeffic]

@@richardcerniglia8417 Thanks. I've already watched his daily video this morning! I started taking NSAIDs daily to cope with pain decades ago (after ibuprofen was rotting my stomach I switched to naproxen). Last month (November) I took no NSAIDs the entire month, again for the first time in decades! But I was really gutting it out by the end and I've had a major, major relapse so right now things are terrible. I know in part due to massive repeated trauma I struggle with being organized, but we're working on it. Thanks again.

[@HisLovedOne]

Goodness! I was 31 too! 🙈 So many simmilarities! And in Recovery too but Mind stuff/ visualizing / nervous system regulation doesn't help me though. Maybe a little since I am Not completely bed-bound anymore... Well done! Happy Birthday 🎉 keep going!

[@catherinejohns7080]

Thank you! All the best with your recovery too.

[@xge555]

At 18:30 question. How did you pick yourself up?

[@catherinejohns7080]

Thinking about my children, and my passion for writing, and wanting a fulfilling life. .I had moments of despair like everyone at times, but always managed to come through, After periods of rest I gradually did more, writing and being there for my family, and while I had the cycles of crashing I picked up enough after rest periods, and I never gave up wanting to live as fully as I could, even with restrictions of illness. but mainly my children motivated me I think.

[@catherinejohns7080]

Wanting to be available to my children, determination to write and live a fulfilling life, Mainly determination, belief, hope. Focusing what I could do, accepting what I couldn't do, but being determined to recover.

[@DottieBengo]

Could I ask Catherine why she did Dan's course twice? Was it to get some advice/support? Lovely lady. I'm nearly 70, have had ME since 1990 and am getting better.

[@catherinejohns7080]

I did it twice to learn everything Dan had to offer well enough to recover. It was a lot to take in and implement.

[@Melted_Butter]

Could someone kindly summarise what worked for her? My brains not working at the moment!

[@catherinejohns7080]

Briefly: belief, hope, determination, Dan Neuffer's ANS Rewire program, setting boundaries, self-compassion, loads of inspiration and useful tips from Raelan's videos. If you can't watch them, just listen, even a little at a time, you will learn so much, Be kind to yourself. never give up, you're not alone.

[@anitapaul230]

Got 3,5 decades with ME/CFS with downward spiral

[@catherinejohns7080]

If you can't watch videos listen. You can start by finding tips from Raelan's videos and she mentions lots of free resources. You can do this!

[@thewaterprophet6880]

I wonder if this lady would like to mentor me?

[@jessicanilsson5941]

For me is it when i feel safety than my system been so still

[@janefaceinthewind6260]

Hi, wee heads up, there's a typo in the thumbnail. Have a great christmas. Xx

[@RaelanAgle]

Oh thank you! 🧡 🧡

[@mpcu225]

May I ask why you’re not discussing PENE? Is it because CFS patients hasn’t got PENE? Post-exertional neuroimmune exhaustion (PENE) is a neuroimmunological reaction of the body to exertion that is characteristic of ME. It can follow even minor physical, cognitive or sensory stress because the body is unable to provide sufficient energy on demand. PENE manifests itself in a worsening of the basic symptoms, which can occur immediately after exertion, but also with a delay of days. The recovery time varies according to the degree of illness and from person to person. It usually takes more than a day and can also last for weeks. Any worsening of the condition can be the new underlying condition. PENE manifests itself in proportion to the exertion, i.e. the more severe the exertion, the more severe the subsequent worsening of symptoms.

[@jog5289]

I have never heard of PENE but always of PEM (Post Exertional Malaise - which is manifested just as you described PENE.) Interesting. Thanks for sharing.

[@SusanWallace-t3d]

Can you list what programs Catherine went through

[@catherinejohns7080]

I tried DNRS and I Can Thrive, which have helped so many but not right for me. Then Dan Neuffer's ANS Rewire which I did for 2 years (going throught the program twice) helped make a breakthrough.

[@anitapaul230]

She looks so young

[@catherinejohns7080]

Thanks Anita! Spending many years indoors out of the sun (too sick to go ou) has an upside maybe!

[@J-xy6eb]

I love this channel but I wish there weren’t quite so many ads lately. It’s off putting and must be hard to watch for people in a crash state.

[@kathleendillon1572]

What programs did she follow that helped her?

[@SplendidlyBright]

She said Dan Neuffers ANS Rewire helped the most!

[@kathleendillon1572]

@ Thank You

[@kathleendillon1572]

Which brain retraining program helped her?

[@catherinejohns7080]

Dan Neuffer's. and tips I learned from Raelan videos.

[@Dteshome85]

Brain retraining can be dangerous for people with Me/Cfs subtypes of chronic lyme or mold/chemical illness

[@catherinejohns7080]

If you're not sure get professional advice. All the best with your recovery.

[@seanm.collins9888]

So natural phases of relapse remittering me cfs?

[@catherinejohns7080]

Relapses less frequent once I learnt to pace myself, and put into practice brain retraining, (from ANS Rewire program and tips from Raelan's videos) including meditation. as well as clean diet, movement, gradually becoming more social, being less of a perfectionist, being kind to myself.

[@privatesuzie4071]

Sorry, did I miss a description of ‘brain training’

[@jog5289]

Catherine did the ANS Rewire Program for this. (As the program that helped her the most.) Raelan interviews the founder on here a number of times. Often no one actually lays out exactly what the Brain Re-training is, as that's why you pay to do a course on it, but Raelan talks about it often in her videos and you may be able to pick up on how to do aspects of it from those videos. I hope that helps. All the best to you. :)

[@kathleendillon1572]

What is she taking to sleep 😴?

[@catherinejohns7080]

This is something that depends on individual needs, and must be discussed with heath professionals. I take mirtazapine, an anti-depressant that has the effect of optimising my sleep.But that might not work for someone else, professional advise is needed. I see it as a stop-gap measure and have already started to reduce the dose with a view to stopping altogether,

[@kathleendillon1572]

@ That is what I am on and it is off label for sleep. The lower the dose, the better it works for sleep. I am on 7.5 mg

[@megsh651]

​@catherinejohns7080 It seems my comment was removed. It was a reaction on your comment about meditation. What meditation did you do? Visualization, just awareness, affirmations?

[@catherinejohns7080]

@@megsh651 I used to do Dn Neuffer's guided meditation, but have gone back to transcendental meditation I learned many yers ago, focusing sometimes on a mantra, or just awareness of my body and breath,

[@catherinejohns7080]

This is something that depends on individual needs, and must be discussed with heath professionals. I take mirtazapine, an anti-depressant that has the effect of optimising my sleep.But that might not work for someone else, professional advise is needed. I see it as a stop-gap measure and have already started to reduce the dose with a view to stopping altogether,