Living Proof - Stories of Hope - Recovery from ME Chronic Fatigue Syndrome 

Hi Leah, thank you for your comments and sorry to hear you are struggling so badly with these symptoms; we know from our experience how hard and how miserable it is. We understand your skepticism - Fiona herself was also skeptical about this for many years, and I too as one of the film producers was skeptical at first (I also recovered from ME/CFS through these methods). We are not isolated examples, between us we know hundreds of people who have recovered this way. We are definitely not suggesting anyone is choosing to be sick. What we are saying is that people do have the power to heal themselves - which we'd suggest is an amazing thing, not something to be feared or dreaded. The specific programme Fiona used is an app called Curable - you can download and access a lot of the initial content for free - it's broken up into bitesize lessons so that people with limited concentration due to illness can still take it in. It can't cause you any harm so you could consider giving it a try - there is literally nothing to lose. But if it's not for you, that is no problem. We are happy to be helping some people, but perhaps not everyone.

Leah I felt Penny's response below was excellent but wanted to say I'm sorry you're exhausted. Nothing about what got me better involved moving away from choosing to be ill or trying hard. There is indeed a lot of stigma around M.E - that needs to change. It's a dreadful condition and I'm so sorry you have it. I am sure my improvement wasn't a random recovery for really quite a lot of reasons, but especially because I've now seen the same science help many other people with M.E recover. This science isn't necessarily a miracle cure, it won't help everyone, but it is very safe and you can learn about it at your own pace. It is absolutely worth giving the kinds of exercises I used a go, even if you've tried lots of other so-called cures. I certainly never thought I'd recover and yet here I am. I hope things get easier for you. Fiona

I'm approving, I'm scared for a CRASH!

I totally hear you! I was diagnosed at 20, I was so ill for 5 long years. Then little by little things started easing and I was able to do more and more until I was running 5 miles a day! I had never felt or looked better, I was so happy and had a new appreciation for my health… then one day (around 4 years later and at this point I’m about 30) I woke up and felt the similar M.E symptoms, I pushed it to the back of my mind thinking it was probably a virus, it wasn’t, it never went away , just got worse and worse. I’m 49 now, housebound and my life is so small. I honestly think there’s so much more to this disease than has yet been discovered. I have tried so many things from diet to all sorts of therapy and nothing has helped for any length of time. For those that have healed permanently you are truly blessed. 💚

Thank you, all, for such thoughtful and considerate responses. I didn’t used to be a negative person before I got sick. It’s all just been so very defeating. I, too, had experienced the same cyclical nature you mention, peppermint. You’re so right, it’s complex and there’s so much yet to be discovered. In the meantime the least I can hope for is growing awareness & support. Some of the sickest individuals remain unsupported by even their families due to stigma and misinformation and it’s truly heartbreaking. Fiona, thank you for sharing pieces of your story and contributing to hope. I again appreciate such encouraging & considerate responses. ❤️

Hi Tracy, yes we like the laugh too! Says it all really. Plenty of people are recovering this way - we hope you will give it a try yourself - let us know how you get on :)

Leah, I can relate to feeling like if I dont get better then people judge that I am not trying hard enough. Please know that you are a true hero with the generosity to feel supportive of others even as you suffer. I'm proud of you for speaking your truth.

@@bhaktifleishman3173 oh, my heart… that is the kindest comment. Thank you. One thing I know is that the MECFS community is some of the most empathetic, realistic & resilient people on the planet. Thank you for sharing a bit of your experience that relates to mine. ❤️

Helpful ❤❤❤

Seriously stop being a victim The percentage of peoooe recovering is bullshit If it’s possible to heal then it’s possible for you, other people can do it, how can you be so negative, look at the evidence of people recovering

Is it possible to come in cntact with Fiona ?

Thank you for your comments, best of luck with your own recovery, lots more info on our website to help you along www.livingproof.org.uk

What are you doing to recover?

How are you doing now?:))

Thanks for your comment, we hoped to inspire people by making the film so it is great to hear it’s working! 🙏🏻

I think the really sad thing is the ME community doesn't realise how comments like these make them look. When I was ill I never wanted people saying things like this in my name. It's a terrible comment to write and actually inaccurate in that the NICE guidelines haven't considered what helped me actually recover

Being gaslighted by someone who mistakenly thought they had ME for 14 years is the cherry on top for my experience with ME. I personally don’t believe that childhood trauma can give you a post infection associated disease. You’re the one I feel sorry for. It must be difficult to make sense of why and what led you to this state for so many years. Mistakenly believing that you had ME and then buying into this nonsense is a kind of extreme form of self punishment/revenge on your former self. I can tell you that having REAL ME is infinitely worse than you can imagine.

And btw insisted that Brain Training or CBT have not been reviewed by NICE is utterly false but I’m not surprised that you would say something like that. Just because it is packaged differently doesn’t make the principles any different. Curable £100 per annum 500k subscribers = £50,000000 per annum!

You have no idea how badly you're coming across. This is only harming the community 😔

Ah I realised you are the man who spent over 24hrs being aggressive on my Twitter. Funny to claim to have M.E then have the energy to relentlessly attack someone over the course of a couple of days. You are a bully and that is all there is to this.

Thank you yes it's great - and so many thousands of people are now regaining their lives through this approach to chronic conditions.

Thank you ❤

Thank you for your comments - we are delighted you found the film empowering. Lots of resources and recovery stories linked on our website (including a 6-week free trial to the Curable app): www.livingproof.org.uk/list-of-resources. We wish you all the best with your recovery, you can do this.

Thanks Lizzie and sorry to hear you are still struggling with ME symptoms. This approach is first and foremost about understanding the theory and the science, then applying the tools within that new context and mindset. The tools alone without the mindset shift will only take you so far. This science won't necessarily help everyone but many are recovering. Age isn't relevant :)

I would echo this. What helped me recover looks simple on the outside and it is but you need an understanding of the science along with the tools. It sounds like you're doing so well but it's really worth diving into Sarno's theories fully. They might well help you further

Without doubt, you are right, Lizzie, about your traumatic childhood causing your symptoms, as your nervous system goes into Fight or Flight, which floods you with stress chemicals and hormones helpful when you're running from a bear - but harmful when it becomes long term. I too had a traumatic birth and was bullied as a child. A trauma counselor told me that trauma gets trapped in the body. Using Peter Levine's pioneering techniques for trauma release has helped me hugely, and then discovering somatic and neuroplastic work has helped me recover enormously, even after suffering with it for 54 years. It can take longer for those of us who had it for decades, particularly if you have a lot of major stresses in your life. But I'm learning new ways to manage them, and my pain has reduced MASSIVELY, and my energy increased. As someone who was mostly housebound and bedridden for years, I'm thrilled to be dancing, writing, performing and socializing again. And I AM in my late 60s - so you don't have to be young to recovery from ME/CFS -- even if you've had it for over half a century, as I have. I wish you the best of luck, and DO understand - I thought for years I would never recovery any further myself. But I kept at it, kept learning, changing, and growing - and it's finally paying off. Thanks, Fiona - what a wonderful story and SO inspiring on days when I feel like the fibro is kicking my butt! But I keep creating safety and doing somatic tracking, telling my overactive crocodile brain I call "Croco Pops" - 'We're fine and perfectly safe. This is all harmless, and I WILL heal." And it's working. I hope one day to be on top of that mountain with you, fully recovered! But I'm still thrilled I've recovered by 80%, and got my life back.

@@fionasstory6126 Dr Howard Schubiner's videos and book and Alan Gordon's book The Way Out are also helpful. For me, they had new research that added onto Dr. Sarno's work I found particularly helpful for ME/CFS and Fibro pain.

@@thedancingdivaofdaviestree2320 thank you so much for telling how you have managed your ME/CFS and how your life has chhanged for the better. It is so inspiring to hear of an older person whose health has improved. It gives me hope. 😊

Hi how did you do ? How do you got your brain safe ?

Did you used the same techniques? Or did you do another program? Like a brain retraining one? Thanks

That's incredible, thank you so much for sharing that (Fiona)

May I ask what program? How are you doing now?:))

@@aglemonlover7709 Hi! I used 'Be your own medicine' and 'CFS School', but essentially I used Dr Sarno's TMS approach. I am doing very well still now thank you :)

Thank you so much. I love what you're doing with your channel so it's great to see your name pop up here (Fiona)

Hi - yes Fiona had brain fog and it is completely resolved. She lives a completely healthy life now.

Hi - sorry to hear you are so sick. For information, a dysregulated ANS can cause all of the biological/physical issues you mention; those are examples of how the dysregulation manifests. We wish you all the best for finding a resolution soon 🙏🏻

@@livingproof-storiesofhope6314 Maybe? but also a lot of other things could such as viral reactivation/persistence, endothelial issues, mitochondrial problems, microclots, autoimmunity etc, there is still lots of research going on finding various pathologies. That is why it is so important we get the phenotyping right with biomarkers so we can get individualised treatment. I think for some of us our underlying pathology is more complex so simply calming down the nervous system to feel safe is just not sufficient. If someone can recover from these dreadful symptoms using these simple practises then good for them, certainly no harm in trying!

@@livingproof-storiesofhope6314 @wildgardens post has valid points. If Fiona (in the video) tried this approach five or ten years earlier, it probably would not have helped much, as her body may not have recovered enough from the prolonged resting period. Also, her caring and supportive parents, have no doubt made a big difference (in helping her recover).

Also, you can see from / in the photos at the beginning of the video, the terrible state that Fiona was in years earlier. Years of rest, has allowed this mind-body approach to help. It was Fiona’s time to recover considerably.

I'm also someone having done lots including ANS rewire, Curable, reading many books, podcasts etc.... 20 years of illness!! ANS rewire, started to give me hope 5 years ago with it's mind body techniques. I still believe it will work, but the healing environment needs to be set and mine has never been good enough to recover. But it will. I've seem glimbses. I continue to adjust new bits and pieces. There is so much involved! Changing your personality traits and rewiring all those fearful thoughts, behaviours and attention to symptoms...and true rest, not lying down and ruminating... It is really a huge job for most with CFS or Fibromyalgia. But it has worked for many and why not for me. And you?

Hi Sarah, thanks for your comment. Hope this can help you on your road to recovery ❤️‍🩹🙏🏻

How amazing, well done

Thank you for this. I feel sad watching this.

I knew when I started telling my story that some people would think this. It's something I used to say about people I saw recover, too. I wanted to address your comment for the benefit of you and anyone else reading these comments who also thinks this. I got M.E after catching a series of viruses. I had consistent PEM over the whole 14 years I was ill which was debilitating enough that I was unable to work or have children - that was a big deal for me as I'd always wanted to be a mum. I had POTS. I have a diagnosis of Ehlers Danlos Syndrome. I also met the International Consensus Criteria which is respected as being something that accurately diagnoses M.E. I was 'treated' by specialists who all agreed I had M.E. So while I know many people still won't accept that I had it, I am confident that I did. And I'm confident too that what helped me recover has the potential to help lots of other people whose lives have been ruined by the condition.

I’m so pleased for you. Thanks for telling your story. It gives me hope.

Thanks for this comment and yes you are absolutely right. We have another Living Proof film on this channel that features the story of Charli who recovered from chronic pain through the same methods. It’s truly revolutionary ❤

Hi there. Sorry to hear you are struggling with symptoms. This approach is first and foremost about understanding the theory and the science, then applying the tools within that new context and mindset. The tools alone without the mindset shift will only take you so far. You may find some of the resources listed on our website helpful for understanding more about the theory, if of interest: www.livingproof.org.uk/list-of-resources

@@livingproof-storiesofhope6314 thanks but I have a great mindset :) I was studying volunteering and travelling and living overseas. It isn't my mindset, it is physical exhaustion and autoimmune related with the cells literally attacking themselves. Do tell me how you think my mindset is stopping me from walking when I want to be exercising having children and meeting the man of my dreams?? I've lost 10 years to this illness. If it was mindset that is the issue many more people would recover.

@@lightofall You are right. It’s not the mindset for many of us. I am calm, happy for the majority of the time. Still declining slowly over the years. I do some nervous system exercises to activate the parasympathetic nerve. Because I believe the illness itself is a stressor for the body, but we cannot remove it unfortunately. But the exercises slightly reduce stress and give me better / deeper sleep. But that doesn’t have resulted in more energy unfortunately.

Please don’t give up. Perhaps other types of resources would work better for you, have a look at the list on our website www.livingproof.org.uk

How much is this program?

@@RyanSmith-uw2ni you can access a lot information for free on Curable before you hit the paywall. For some, this is enough to recover. Beyond that, you’d have to check on their website. There are also lots of other free or low cost resources on our volunteer-run website: www.livingproof.org.uk

Glad you enjoyed the film Anne. Lots of other resources on our website too: www.livingproof.org.uk/list-of-resources

​@@livingproof-storiesofhope6314It is such an inspiration. I want to try what Fiona did. Where can I find the method? Where can I find the app to download? I'm hoping it will help me.

Hi - this is amazing to hear! What we would recommend though is that you still do the work of retraining your brain and processing your emotions to make sure you stay well. More info at www.livingproof.org.uk

Sorry not to see this until now. I did! I very much felt that the change had to happen from the outside in. I couldn't risk pushing myself and then crashing.

Hi there, it took Fiona in the film about 3 weeks to recover. I am one of the film makers and I also recovered from ME/CFS, it happened overnight for me, unbelievable though it sounds!

​@@livingproof-storiesofhope6314 is your story also on RU-vid?

Hi there - the specific programme that Fiona followed was the Curable app. It's a great app but there are also lots of other resources available, many at a lower cost. More info here: www.livingproof.org.uk/list-of-resources

Hi, Fiona followed the programme on the Curable app. There are lots of similar low cost resources available, have a look at our website for more: www.living proof.org.uk 🙏🏻

Keep going :) You'll get there

@@livingproof-storiesofhope6314 thanks so much. And thanks for sharing your experience. The hill bit really resonated with me. We have one near my house and I watch people walking down it to the river in awe of how they can get back up it!

@@peachesmcgee4795 one day you won't be in awe anymore, you'll be walking it yourself :)

@@pennyg9866 I hope so-Thank you

And thank you for the feedback, we are hoping this film can lead to people like you finding their way back to a healthy happy life ❤️

Hi Dee. I also had severe ME (was housebound and bedbound) and recovered using the same techniques as Fiona. There are several amazing mind-body resources out there - the one she is talking about specifically is the Curable app and this was the starting point for my recovery too: www.curablehealth.com/ I know it's hard to hear about different recovery approaches and have hope that they will actually work, but for me learning about the mind-body connection was a complete gamechanger - I finally understood my symptoms and it all started to click into place after so many years of confusion. And amazingly my recovery involved no resting or pacing whatsoever (which I had been relying on for years!). This short video by Dr Schubiner is also a great introduction to the mind-body recovery path: ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-uATL44_wQtE.html

Check out ANS Rewire with Dan Neuffer, or Raelan Agle's youtube podcasts - more multi-faceted approach, but big on brain retraining

You can also find a list of other resources, many of them low-cost, on our website www.livingproof.org.uk

Beware of Miguel Bautista - that person is a fraud who has ripped a lot of people off and offers practically nothing of actual value.

Hi - the specific programme Fiona used was the Curable app. But there are lots of different options and resources listed on our website: www.livingproof.org.uk/list-of-resources, you can see what might suit you best.

Hi Rachelle, sorry to hear you have been unwell for so long. The specific programme that Fiona followed was the Curable app. It is a fantastic app with a clear programme to follow, but it does have a cost attached. There are also many other resources available, many of them at a lower cost. More info on our website: www.livingproof.org.uk/list-of-resources. Very best of luck - thousands are now recovering with this science.

In my case I used Curable

@@fionasstory6126 Thank you 🙂

Hi - sorry to hear you are struggling with CFS; it is indeed a miserable condition. Best of luck with it.

Hi, I just saw this comment and wanted to respond. I hope you know we think M.E is 100% real and absolutely it is physical. I also had consistently high inflammation markers (across years), crashed from things like sensory overstimulation and temperature extremes etc. My condition also started after a series of horrible viruses. I was ill enough that I was unable to have children. Did meditation cure me? Absolutely not. It is your choice but I would hope you'd look more closely at the techniques that helped me recover, even if just to rule them out. I started using them also thinking they were rubbish but they gave me back my life. It is absolutely up to you though, it has to be your choice. Anything about John Sarno's theories is worth looking into. Wishing you well as it's clear things are tough for you right now. I know both Penny and I are always happy to answer questions and there are so many free resources out there too. X

Hi Jessica, thanks for your message. Please have a look at our website www.livingproof.org.uk for more information and resources on how you can try this approach yourself. Good luck, you can do this :)

Hi Aneesa, thanks for messaging. Feel free to have a look at our website www.livingproof.org.uk in the first instance, there is lots of information and resources there on how you can try this approach yourself. Best of luck, now you know it is possible.

I dramatically improved my symptoms (but eventually hit a ceiling) with an essentially Paleo diet, tailored to my needs over a long period of experimentation. Overnight I quit all potential problem foods, including sugar, casein, gluten, and processed food. Within a couple weeks my brain fog lifted dramatically, my daily crashes got less severe, my headaches and sore throats lessened in frequency and severity, and my energy picked up a little. After about six weeks, the improvements stopped coming, but I was happy enough with the results that I've never in 9 years gone back to eating the way I used to. I eventually figured out that I am intolerant to nightshades and high-FODMAP foods. (I was able to reintroduce FODMAPs after successfully eliminating a harmful bacterial overgrowth in my guts.) Quitting sugar was very difficult for the first few weeks, but 10000% worth it and eventually the cravings went away completely. I am very happy eating the way I do. www.drmyhill.co.uk/wiki/Category:Your_very_good_health!

Hi - Fiona experienced chronic pain for 11 years before then developing ME. She was also diagnosed with POTS. We couldn't cover everything in such a short film so decided to focus on the ME :)

Hi - yes, lots of people have resolved tinnitus with this approach, please do give it a try!

Yes - my partner is having good results with the mind body approach. It hasn't totally gone yet but is on its way out.

Which ones have you tried? (sorry for only seeing this comment now)

@@fionasstory6126 DNRS, CFS Unravelled, Gupta and another one that no longer exists. 😊

It is!! Well spotted

Yes that’s right, same Fiona 👍🏻

Yes it really is, we are so happy you've discovered this too.

Yes! I had ME/CFS for years too but now I am well. My brain was trying to protect me with symptoms. If you are unwell look into the mindbody approach, Dr Sarno and TMS, Dr Schubiner "Unlearn your pain" and you could learn too. It is SO worth it to get your life back!

@@MEhealthcoach No. We do not have the same disease. Glad a placebo helped you though.

@@HarmlessHobby Yes placebos go to show the power the brain has to heal us. Whatever illness you have I truly hope that you recover. All the best, never give up hope and good luck.

@@MEhealthcoach this is not how me/cfs work. Even the CDC and NIH now accept that it's a neuroimmune disease. You wouldn't tell someone with MS to unlearn their pain

ME since 1984 here and I say yes. Please don't believe the instagram loving ME "advocates" and the toxic "support" forums. You can get well.

Living Proof - Stories of Hope 5 days ago Thanks Cheryl and sorry to hear you are still struggling with ME symptoms. This approach is first and foremost about understanding the theory and the science, then applying the tools within that new context and mindset. The tools alone without the mindset shift will only take you so far. This science won't necessarily help everyone but many are recovering. It sounds like your chiropractor is on the right track which is great news. You may find some of the resources on our website helpful for understanding more about this theory: www.livingproof.org.uk/list-of-resources

Cheryl, my name is Cayla and I would love to correspond with you if possible. I live in Virginia but may be willing to travel to see practicioners like the ones you described. I've never heard of a couple of the therapies that you mentioned and am interested to learn more.

Thank you so very much.