Sophie's SEVERE Chronic Fatigue Syndrome Recovery Story!
ฝัง
- เผยแพร่เมื่อ 14 พ.ค. 2024
- Sophie has gone from being bed-bound with severe ME/CFS to now having a part-time job, walking an hour or more per day, and having a full life! Here she shares what brought her these tremendous results in her chronic fatigue syndrome recovery story!
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Remember that this is for information purposes only. We are not healthcare professionals and nothing we share should be considered medical advice. Please make your own assessment, do your own further research, and consult your trusted healthcare professionals before deciding if anything I talk about here might be right for you.
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TIMESTAMPS
00:00 Sophie’s introduction
00:56 Sophie’s life before ME/CFS
03:20 How Sophie became unwell with ME/CFS
06:07 How onset doesn’t always look the same
07:40 Sophie’s primary care doctor’s response to her condition
09:50 What it was like living with severe ME/CFS
16:34 How Sophie found the specialist that would help her get her life back
18:09 The role exercise played in Sophie’s recovery
24:09 How I stumbled upon a similarly effective recovery approach
29:14 That time when Sophie called me a "sausage"
31:22 The various specialists and health centers Sophie used in England
35:26 The potential role of supplements in recovery
41:25 What barriers to treatment Sophie feels exists
44:43 What life looks like now for Sophie
45:51 What lessons Sophie has taken away from all of this
48:09 What free resources Sophie is sharing and how to connect with her
FURTHER RESOURCES
Check out my book! FINDING FREEDOM: ESCAPING FROM THE PRISON OF CHRONIC FATIGUE SYNDROME. View on Amazon -- amzn.to/2LtzBcl
Sign up for my NEWSLETTER here! mailchi.mp/3bd95045319b/raela...
HOW TO CONNECT WITH SOPHIE
INSTAGRAM: / sophs_ab
THINGS SOPHIE MENTIONED IN THE VIDEO
1. 'Why We Sleep' by Matthew Walker
amzn.to/34WYFSj
2. 'Overcoming Chronic Fatigue' by Professor Trudie Chalder & Dr Mary Burgess (Prof. Trudie Chalder is the founder and CCO of the Maudsley Fatigue Clinic, which is the NHS facility I operate under)
amzn.to/33LiGvt
Specialists:
1. Dr Gerald Coakley - The London Fatigue Clinic, www.fatigueclinic.co.uk/geral...
(patients need to be aware that this is a British facility; if they are calling overseas, there will be a time difference and currency difference!)
£250.00 per session
2. The Maudsley Hospital Chronic Fatigue Unit - Persistent Physical Symptoms Unit - www.slam.nhs.uk/our-services/...
(This is a pioneering fatigue clinic, the only one of its calibre in the U.K. Unfortunately, as it is an NHS facility, it will only be available to British residents!)
WHERE TO FIND MORE ME/CFS FULL RECOVERY STORIES BY LIZ
healwithliz.com/
IF YOU ARE IN NEED OF EMERGENCY MENTAL HEALTH SUPPORT
US National Suicide Prevention Lifeline 1-800-273-8255 or text HOME to 741741
Canada text HOME to 686868
List of international crisis lines en.wikipedia.org/wiki/List_of...
SUBSCRIBE TO MY TH-cam CHANNEL
/ @raelanagle
WHAT TO WATCH NEXT
PLAYLIST: Other people's ME/CFS stories!
• All Health Recovery St...
OR TO BROWSE ALL VIDEOS JUST CLICK HERE bit.ly/raelansvideos
LET’S BE FRIENDS ON SOCIAL!
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WEBSITE: raelanagle.com
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CRISIS LINES
US National Suicide Prevention Lifeline 1-800-273-8255 or text HOME to 741741
Canada text HOME to 686868
List of international crisis lines en.wikipedia.org/wiki/List_of...
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This video has changed my life. I have seen significant improvement in 3-4 weeks since getting the recovery guide. I went from being physically able to leave my apartment 2-4 times per week, to being able to go out in the sun (or rain, who even cares?? 😃) every day! I’m happier and... I’m WARM 😮😮😮 Seriously guys, thanks
This is AMAZING!!! I''m beyond thrilled to hear that ❤️
@@RaelanAgle
Raelan,
Thank you for your fantastic video.
Would it be possible for you to forward to me your recovery programme?
Many thanks
Jim Dolan
@Raelan Agle Hi! Where can we access the recovery guide?
Beautiful story! I love the positivity on this channel. It's so true that you can recover from this. I had this years ago back before there wasn't much on it. I had no answers and no help. I only had my intuition to guide me.
I did recover and I was a severe case. I was really blessed that all the "not recovered" stories never entered my space. I just assumed based off my intuition that I would recover and I'm grateful for that because I think your own belief as to whether you can or can't is huge. If you believe it opens the mind to find every possibility that is possible and without belief it closes the mind down and against even consider possibilities.
I'm currently in a relapse after 2 years of chronic stress with my teen daughter getting cancer but even now I refuse to believe I won't recover. I experienced just how powerful our spirit is in commanding the mind and body to do what we tell it and after you witness your own power, you can never go back. Our bodies and mind are always listening and doing what we say so be so careful what you tell it.
Also the foundation is revealed when the house collapses. CFS is a spotlight on YOU- the true you. When everything you thought was you or made you happy is gone, you realize happiness actually comes from you. Peace is inside of you and it can never be taken or stolen. You are HAPPINESS and PEACE and HEALTH and whatever else you decide you are. It's not out there, it's in you! You get to decide if you'll be happy regardless of the situation. And when you realize you have the right and control over how you respond to the situation, you can choose different thoughts and you can choose to feel peace instead and that energy radiates outward from YOU and it literally had the power to changes your whole life and transform your body.
So don't let this time go to waste. Don't let any of your CFS years go to waste. Use them to find out who you truly are behind all the crap we think we need to be "happy". Take this time to build a solid foundation so when the winds come again it won't knock you down. You'll be solid in who you are and the power you hold.
Even now im wobbling but this isn't knocking me down because now I know who I am and I know I'm stronger than ANYTHING that will come against me and I know that even though I'm struggling against this again, I will win. It's a mathematical certainty that the light always overcomes the dark. And if I can't find the light in the dark, then I'll just be that light.
Awesome interview totally what I needed to hear today! Have had severe ME for over 12 years now with most of my time being bed bound. Getting better is such hard work and very tricky but I’ll get there! Thanks for your inspiring content, feel so grateful to have the internet for help motivation knowledge and inspiration 🥰
Great interview!!!
Incredibile interview.. I can relate and Identify with all that was talked about.. Thank you So much for taking the time to do this interview.. It's alot to take in, but answers alot questions in my mind.. ❤
Wonderful story! Thanks so much for sharing.
Thank you so much both of you for creating this video. I can really relate to sophs story. I struggle with cfs and have my darkest moments now and this video really helped me see the light in the tunnel. Thank you SO much. 🙏❤️
You are so welcome!
I feel so seen and heard in Sophie’s words. Thank you for your genuineness and honesty. ❤️
💖💖💖
Great interview!! So happy about your progress and thanks for spreading hope and information 😊
Hey Elin! So glad you enjoyed this ☺️
Another great interview Raelan, thank you so much for sharing these inspirational stories, if only this net of recovered sufferers had been around sooner. It's always so ensuring to hear people having similar stories, purely because it makes us sufferers feel less alienated and invalid after all the medical advice of "you're fine". Sophie's attitude is so inspiring, and it's always super heart warming to see sufferers recover and become much better people at the end of it. Completely agree from first hand experience regarding repetition, slowly increasing weight load, and prioritising strength training over cardio to increase strength. Think you're on point about supplements as well, they can help, but I don't think nearly as much as some treatment programmes make out. With GET, it really needs to be tailored, and you have to start so simple and slow, but you do make progress. There's never a one size fits all with health. Thanks again both! and stay well!
Hey Titus, this is so well put! There definitely seem to be overlaps in treatment approaches that work but even so things still need to be individually tailored it seems. And I'm so happy to hear that you've had success with strength-training as well!
Great interview. Thank you... I’ve had ME for over 20 years but was only diagnosed a month ago. Now I know what’s been happening to me trying to get myself better.
Glad it was helpful! And wow, what a long journey with this Sakura. I'm so glad you are finally figuring some things out. Sending you all my best 🌸
Great interview. They've gotten so much better since your first one😉. Thanks for all the work that you do.
Glad you like them!
Another fantastic interview thank you. I arrived at CFS as a slow decline like Sophie.
I'm so glad I've found all these positive stories, as I was originally told I wouldn't get better and I've already proved that wrong.
Amazing! So glad you're making progress and that hearing Sophie's journey was helpful. You'll get there!
Great story. Very motivating. Thank you!
Glad you enjoyed it!
This is really great! Thanks for sharing Sophie! :)
Thanks for watching!
So very informative and helpful. Thank you Sophie, wishing you well 🥰
💓💓💓
Hi Raelan and Sophie, I was diagnosed a year ago and like you both, it was a slow burn! I had a frenetic lifestyle working as a locum nurse, flying from New Zealand to Australia and back every 2-3 months for 6 years. Eventually I stopped that and stayed in NZ working in a busy GP practice, then Covid hit making it even busier and more stressful. I've now stopped work altogether in the past month, sold my house, moved closer to family for more support. Thank you both, I've been watching your channel Raelan and starting to make some changes with my diet, pacing and very slow graduated 'movement!' Fortunately I can function reasonably well but can easily overdo it then crash. Fortunately I have a very supportive GP who knows a lot about this illness and I was diagnosed last year by a ME/CFS specialist. Both your stories are very inspiring and give me hope that I too will fully recover. I feel like I'm changing hugely as a person and look forward to coming out the other end of this experience. Keep up the great work!
Amazing, Wendy! Good for you for putting your all into this. Sending tons of love and support your way 💛
Thank you for this 😌
You're so welcome!
I've just started working with Sophie now and she's just such an angel, so so engaged and puts so much time and effort into answering all my questions and never make me feel bad even if I ask the same thing twice.
Amazing!
@camillabergersen2961 can you tell me/us about the program of Sophie ? And how to reach to her ( i am not on insta ) ?
Love Sophie's spirit and insights! I love how Sophie provides an alternative from the pharmaceutical and supplement illness management approach. So many acronyms are thrown around with this condition, but it really seems to comes down to the practitioner and the individualized approach. I know a lady who went to an exercise clinic who was told at 15% functionality to start by walking a mile (which didn't end so well) and many more who tried to do it themselves (it's not a surprise to me that athletes are often the ones who end up bed-bound). I am so glad Sophie was able to find the right fit and a personalized plan (down to blow-drying her hair!). Another good video on the power of lifestyle medicine.
Thanks so much for sharing this, Liz! I think you point out something really important, which is that exercise when used as rehabilitation is often handled poorly, and as a result (understandably!) people won't consider it. And also that the individualized approach is so important!
Excellent video!!! Thanks for sharing your story, Sophie! I could relate to your story and was so touched by your honesty. You are spot on in terms of the importance of routine. You are so brave and I wish you continued progress in your recovery. With everything going on in the world, I have been struggling. I realize that I have been consuming too much media coverage of the upcoming election. This has caused some imbalance, and has had a negative impact on my health. There is no room for negativity in my recovery. This conversation has been a gentle reminder to get back to the basics, and I thank you for that! And Raelan, you are such a natural in your interviewing techniques! B
i had same last yr with uk's GE. honestly, disengage from it all. There are others who are healthier than you who can carry the political baton, just ensure you n urs vote. Its all we CAN control. Your health is a damn site more important than which puppet is sat on the throne n frankly, both candidates are a joke n corrupt imo. i know it hurts to see whats happening in the world, but as with airplanes n fires, prioritise urself first so u CAN later help.
@@kimwarburton8490 Yes Kim!! So perfectly said! I was a former news junkie myself. Went cold turkey after a turning point during recovery. I'm on the other side, but I haven't gone back to the news (cable TV, online newspapers, or Twitter) or getting into debates online. I am doing things to support good causes and people now, though. :)
@@HealwithLiz i still let myself get dragged into sharing my mind bit too much xD
I'm so glad you enjoyed this Bobbie (and thanks for your kind words and support!), I'm so glad you've got the insight to see what's helping and hindering you. It sounds like you are on the right track 🌷
@@RaelanAgle Thanks for the feedback, Raelan!😁
Thanks so much for this interview! I can really relate to those dark thoughts during the time i was totally bedbound. I do agree that movement is important! It gets the lymph moving in our bodies. I believe if done right it is good for us. Im working at a low level of movement, about 3 min of easy strength excercises, 4-5 days a week..im hoping to add in some gentle walks every other day.
hey kathy, qi gong since may gave me another boost, just added yoga. Glad to see ur still on track :D
@@kimwarburton8490 thanks great! I hope you are doing well!
This is a lovely story and you know I have so much respect for you, Raelan. I think the thing is that a lot of us started off on a slow decline and just trying to keep up with our daily movement got us here. I know personally I have tried grading my movement so many times, just like the supplements. I have actually found some supplements relieved some symptoms so in the same way Sophie may think supplements didn't help, maybe for others movement doesn't. Or perhaps in some cases movement was the last thing that was needed because by that point other things were aligned. I am interested in hearing everyone's stories and I am so relieved for Sophie. I just don't like being judged (I don't mean you or your channel) by others as if being lazy has got me here. I try every day to get up, go down the stairs and sit with my children for a few hours and even so, I end up crashing. Motivation and effort is not what I am lacking and it feels frustrating.
I had an appointment recently with a GET professional who really made me feel like she thought I just wasn't trying even though I have started a business from bed since becoming ill so am clearly not depressed or lacking motivation. Excuse my rant but I wanted to give my thoughts on why people may get like that when GET is mentioned. Also in the UK now those NICE recommendations for GET and CBT are being reviewed because they think they have caused a lot of damage to some patients so aren't always appropriate. My local clinic won't even see people who can't get out of bed so that gives some idea of the prejudice many are facing from the places that are meant to support them. I was told that if I didn't accept GET I wouldn't even get a formal diagnosis so I am now being re-referred by my GP. I am 6 year in to it too so it's a massive delay in diagnosis already!
I forgot to say though that I would love to read Sophie's guide but I keep my instagram for business and try not to bring the ME side into it. Is there a way I could get in contact outside of instagram? Email maybe? Thank you! x
You make a great point, Jenna. It very much seems that there is no blanket approach. Thanks for sharing a bit of your journey and insights 💛
You could email me at raelanagle@gmail.com and I could connect you two there :)
I love you guys so much!!
Aw that's so nice of you to say! Thank you 💛
Danke!
Wow thank you so much Cedric! 💓
I think weight training with cfs is actually the best exercise you can do if you can handle it, particularly lower rep ranges/heavier weights and longer rest breaks, definitely a step to go before doing more engaging work from a cardiovascular perspective
I've definitely found the same, Nick. Strength training has been a savior for me (and cardio had to wait a long time before I could handle it).
Agreed but dynamic resistance might be a better choice for less likelihood of injury.
That's what I do. I can't do cardio or heavy volume. But I can handle very heavy weight for low reps. With tons of breaks, lol. It's the only thing I can do outside of rest. Along with my dog, those 2 things keep me alive, the physical strength of my body lets me know there is hope. Mental exhaustion is what is keeps me down, along with chronic disease which I'm also slowly healing. A few times I had a few days here an there where I felt absolutely normal, clear brain, I was sure I was over this 20 year struggle. Unfortunately I haven't had more than 3 days in a row before I am back to brain melt. My coping mechanisms have gotten so much better the more I focus on the teeny improvements. When I can run my bath I am grateful. I can brush my hair everyday. I'm no longer bedbound. I open my curtains. My room is a mess, I would never allow anyone in here, but I sweep regularly and make my bed most days, even if I'm just getting back in it, change my sheets when they are dirty. The things people take for granted, I cherish!!! I can do my favorite thing in the world, powerlifting and I will be setting records soon. Something I am not sure at 49 years old I would have accomplished so quickly if I didn't have CFS and had to work a full time job and maintain a social life and a partner. But with CFS I have nothing but time to recover. There are always silver linings if you seek them. Find something, anything you can do and really get into that thing, work on it when you get the slightest bit of energy. On the days I feel like I can't move I try my best to at least make it to my yard. Seriously any little thing we do beats laying in bed all day and helps the body stay used to movement. I know that the longer I stay in bed the harder it is to get out, the easier it is to be negative and feel sorry for myself, to feel this will never end. It is a fight but we are worth it and cannot give up!
cardio at any serious level is gonna kick our butts and there are big studies that have shown this when they actually set out trying to show the reverse
I think one of the most toxic notions around is that we are able to recondition ourselves out of this disease - the logic flops because we *got* here without opting to decondition at the beginning, something was able to sap strength out of athletes, fighters, climbers , coaches etc
You didn't claim anything like that - im just doing stream of consciousness cause today is a foggy day and I cant remember how I got to this thought bubble!
@@etherspin Fair enough. It sucks and while exercises might help a little we can't compare ourselves to those who aren't sick.
But we can keep on trying and testing our limits gently and hopefully, those with the know-how in the medical business will be able to help us recover or at least find ways to minimize the pain and exhaustion.
I hope your day gets better. If you know what might help you feel better then here's a little push to go do it ;)
I know how hard it can be sometimes to just get up and do it be it to go outside in the sun a bit or take meds, doing some yoga or watch some videos for a distraction.
Nice Video ❤😊
What's so great about your videos is the time stamps lol. I hate listening to long videos 😅
I crashed today and felt SO LOW. This helped pull me out of the helpless not wanting to live headspace. Thank you so much for all of your videos. ❤️ I am looking for a therapist who understands CFS who can work with me via video calls. My insurance requires them to live in the US. Do you have any leads?
So glad this was helpful Christina. This can be a hellish journey - completely understandable that you are struggling. Unfortunately I’m not sure about counselors, but I love that your looking! All the best to you for your own recovery journey 💛
Had a laugh at the poor sausage expression 😊 People here in NZ tend to say that too, aswel as Silly sausage (when someone is being silly)
Great interview
Haha that's awesome! It was a new one to me, definitely cracked me up 😂
Hope is vital... "...the bounties of God never cease to flow upon man. If viewed from one perspective they seem to decrease, but from another they are full and complete. Man is under all conditions immersed in a sea of God’s blessings. Therefore, be thou not hopeless under any circumstances, but rather be firm in thy hope." ~ Abdu'l-Baha, Baha'i Faith
Im so glad I saw this interview! I have shied away from exercise altogether because if I have a 15 minute walk (even very slowly) I feel terrible for a few days after. This has motivated me to start with much smaller chunks and build it up slowly over time. I am also way better than I used to be and don't have 2 years to wait for an amazing Specialist, so I'm going to be super disciplined and work out a system.
So generous of Sophie to offer her help for free!
I'm so happy to hear that you've found this channel helpful! Thanks for taking the time to share that ❤️
Great to hear from Sophie. just a heads up, I looked up that Dr in London, read his website, he appears to be using GET and CBT from a couple of the testimonies on there. They have now come out and said these two modalities are not recommended for CFS/ME. I don't know for sure tho what he does. Also the clinic Sophie went to may have been the same - GET and CBT - both are now said to be not helpful for CFS. They were the old school chronic pain treatments also. Its like everything with CFS, what works for one may not be for another.
I enjoyed this and think in the uk anyway it can be good doctor bad doctor I waited a year for GET in my area I got my appointment and the specialist just told me to do 2 hours exercise a day , no idea of what exercise is , how to do it ..nothing when i said i would try she said no you do it thats the point ! see you in 3 months... i cried and tried ending up on the floor in attempts to move , however the idea of it as sophie described would really help building up , how to do it , process . I have had ME/CFS for about 7 years now and would consider myself 80% recovered
Oh my goodness, Sian, I am so sorry to hear that you've had to do through this. Two hours per day?! That is INSANE. I'm so happy to hear about your 80% recovery though, great work on that! I hope you find what you need to polish off that last 20% soon 💛
Hi ladies, thank you for the information. I was wondering if there is a resource on how to slowly build up your exercise routine, the one that the doctor used. It would be cheaper to figure that out yourself, then spending a lot of money. Do you think you could maybe find a resource providing this info? That would be so helpful. Many thanks!!! : )
If you reach out to Sophie on Instagram she has resources: sophs_ab
@@RaelanAgle thank you : )
It’s crucial to distinguish between patients who meet strict international diagnostic criteria for ME and those who have chronic fatigue. Chronic fatigue is not an illness, it’s a symptom of many different illnesses. Some people with chronic fatigue are helped by exercise. The defining feature of ME is that it is made worse by exertion. Research is starting to explain why and now shows that there is a problem with energy production at a cellular level in these patients. Pushing them to do activity beyond their limits does not just cause the kind of symptoms caused by deconditioning but causes actual damage to muscles and other bodily systems which are now measurable in research. Conflating chronic fatigue and ME is very dangerous and is the reason so many ME sufferers have been harmed by graded exercise programmes over the last 3 decades. By all means use exercise to treat chronic fatigue that does not meet strict ME criteria but not for strictly defined ME.
Me and CFS is the same in Germany, a synonym. If you have got cancer for example the tiredness is called "fatigue", without chronic.
"...little did I know, the more I rested, the worse they would get (the symptoms)". Wow, that is very interesting. I wonder if that holds true for most people w CFS. I notice I do I feel way worse if I sit most of the day.
This is just anecdotal obviously, but so many of the people I speak to say the same thing about rest. It seems a 100% rest policy is not a great idea for many. It's a tough one though, isn't it? Because we definitely need rest! A bit of a balancing act it seems...
im so happy for her but as a cfs sufferer 28 years n live with fibromyalgia, severe osteoartheritis n rheumatoid... please be carefull for new peopple diagnosed .. im not qualified medical but having 4 people in my family of cfs i learnt pacing n be carefll . my uncle has passed so did my cousin who had it .. my 34 year old daughter has a mild case she has down syndrome / fibro / cfs and osteoaartheritis .. she struggles with fatigue bad .. she is in her 11th year . n when u dont have support living in your home like me its difficult
I'm so sorry to hear about all of this Margaret, I hope you are managing ok 💗
Thanks for ur bravery re facing backlash
My muscles r killing me 2day because after my bath, itll b my third diy yoga following my nans 1970s instruction book. She herself later became an instructor. Shes in her 90s. Still mobile n she puts it down to yoga.
I think we owe it to ourselves to have as youthful an oldage as possible cos o the years weve lost.
But ultimately, it was these vids that made me decide to add yoga now n im surprising myself at how good i am. N despite lactic acid, my body feels more wholesome.
I mightve lost more time had i not seen ur story. Iv instinctively n naturally been becoming more active overtime n cos horsey knowhow, bit more savvy than most non gymrats n introd qi gong in may2020
2day with monthly pains i mightve only hugged my hot waterbottle allday without this video xD
And then, there would be the 50% risk id not pick qi gong n yoga back up again in a weeks time, when my energy n motivation returns to current normal.
Had i not seen THIS video and finally understood the importance of consistency other than a general 'its a good thing'
I see this now also as an opportunity to build willpower/discipline
I'm so glad this was helpful Kim, and it's amazing to hear how much you have figured out on your own and that you are seeing progress! Well done, lady 💛
Our daughter was 11, 17 yrs. On, can't find any help here in the states
Hi, Sophie mentioned during the video that she was offering a write-up on all the things she learned during her recovery for free. There doesn't seem to be a link to that in the video description below so I was just wondering if anyone knew where it could be found?
You have to message her your email and ask her to send it over 👍
@@briieme Thanks so much for your answer! I don't currently have Instagram so I guess that is something I'll have to look into.
Crikey,I've never heard of an ME treatment centre like the one she attended.It really is a postcode lottery here in the UK.
Wow, I'm sorry to hear that. Sounds like there's huge differences in what's available 😐
@@RaelanAgle yes for sure.i had one session on pacing (it was v basic) years ago before the "clinic" lost funding and was shut down!
Found this very interesting. GET seems to have had a really bad press here in the UK. Just shows how different we all are! Am finding that many different things help with recovery and it is incredibly difficult as you have to be your own Dr. My local ME service basically gave me the label and told me to go and live under it.
Well said, Linda. Unfortunately we all seem to have to do a ton of our own research and experimenting to see what might be right for us. I'm so sorry that happened to you with the ME docs. Again, unfortunately a common experience it seems. Thanks for sharing this, I think it's so helpful for us all to learn from one another ⭐️
remember that GET first had all positive press because its what lots of psychologists and psychiatrists + insurance companies *wanted* to frame CFS as being fixed by - they did not want this to be a complex condition with any known biological mechanisms properly understood but wanted it to fall under the psych banner and be exacerbated (supposedly) by the person who is convinced (wrongly according to them) that they are weak then letting their muscle waste away.
the studies they engineered to try to prove this showed the reverse even after they tried changing the goal posts so far that some of the people who entered the study would technically have been considered recovered before it even began.
I think its potentially the single claim about CFS that we must treat with the most rigor and skepticism given that its not one that will leave us none the worse if it doesnt help, it has potential to make us bed bound and unable to speak as well as making the condition functionally permanent.
I did almost exactly this because I tried cutting out all social activities and reducing my work days and hours to phase in all different types of muscle building exercises. this heralded my most rapid deterioration
my inclination with folks who do get better while doing exercise programs (and its just my personal hunch) is that something else has switched in their biology and now with the immune and other systems recovering they just need their tone/muscle back and basic cardiac capacity
@@etherspin yes. They would recover no matter what. GET just helps with deconditioning.
46 Kg is about 101 lbs.
*How tall are you?*
Also... in order to get better you need to, by definition of what recovery is, do more. Yeah there’s kick back which can be severe at times but, blasting exercise just seems silly to me
I've totally with you, Nick. Honestly any form of exercise always made me feel worse, but it was about finding that manageable amount of "worse" that building strength from there. Just my experience, of course!
Amazing! Did Sophie any particular diet at all or focus mainly on GET
Some people recover with sarno stuff, some people with rewiring and visualisation,( like dnrs and gupta and LP ETC) mickel therapy, meditation, some with trauma based therapy using somatics etc etc etc. Diet, supplements. Etc . No one modality or approach is the same. Hard to know what to do. This girl's approach seems a version of the much maligned and frustrating " graded exercise and pacing" . Anyway, if it's worked for her, brilliant. I have been unwell for 40 years, and i'm 62 now, so i've kind of given up. My last shot was a home visit over 3 days with LP . 1800 POUNDS. did not work, think i had wrong teacher , nearly went with jason mctierman, who i think would have been better. But, when i approached him for some follow up, he was unwilling because my original teacher was someone else. Sophie is right about supplements. Juicing is great, kefir and bone broth are really helpful. Chi kung too. But the big one is turning off PER ( PHYSICAL emergency response) dan neuffer is 100 per cent correct about ans . But turning stress response down, it would seem, turns out to be extremely difficult . I even did buteyko breathing which made me feel so ill i nearly killed myself, so , anyone out there BE WARY of buteyko . Sophie seems a lovely person .
I really hate to hear that anyone has had to struggle for as long as you have. Have you tried Dan Neuffer's ANS Rewire program? I've only just recently started it but so far, I'm impressed. It seems fairly comprehensive and makes a lot of sense to me. But just like we're all a bit different and there's various triggers and levels of severity, I imagine there's no one size fits all. But a well rounded, informative program like ANS Rewire seems to be worth the try.
mam I tried a probiotic 35 billion cfu but my condition got worse.would kefir help me to recover ?
Hi Neha, I'm sorry to hear that the probiotics made you worse. All I know is my own experience, which is that kefir and other fermented foods helped me a lot 😊
Sophie, have you ever tried the carnivore or the lion diet? It's the ultimate human diet. Try it just for a months and see what happens to your body and vitality. It is the best diet, since after a month or so you can introduce one food item a week or so and see clearly how your body response.
Interesting interview - strongly disagree about blood work to back up vitamin and mineral deficiencies. Supplements have helped my daughter and I IMMENSELY!
Its a privilage to being able to distract with netflix!
I highly question this for my 27 yr. Old very severe ME daughter. , I just can't understand how this works, are there even therapy in the USA, 17 yrs. Of trying dozens of things, please help us here in Ohio., I can't even imagine being believed. , you can understand our distrust.
I'm sorry that you and your daughter are going through this. There seem to be many paths to recovery and it's challenging to know what will work for your daughter specifically. I hope you find the answers you need soon 💛
TIMESTAMPS
00:00 Sophie’s introduction
00:56 Sophie’s life before ME/CFS
03:20 How Sophie became unwell with ME/CFS
06:07 How onset doesn’t always look the same
07:40 Sophie’s primary care doctor’s response to her condition
09:50 What is was like living with severe ME/CFS
16:34 How Sophie found the specialist that would help her get her life back
18:09 The role exercise played in Sophie’s recovery
24:09 How I stumbled upon a similarly effective recovery approach
29:14 That time when Sophie called me a "sausage"
31:22 The various specialists and health centers Sophie used in England
35:26 The potential role of supplements in recovery
41:25 What barriers to treatment Sophie feels exists
44:43 What life looks like now for Sophie
45:51 What lessons Sophie has taken away from all of this
48:09 What free resources Sophie is sharing and how to connect with her
My next challenge for you is to find someone recovered who has kids 😊
I'm happy to say David, that my next video (coming Oct 17th) is a full recovery story from someone with children 💛
@@RaelanAgle 😘
Or someone in menopause 😟
@@marylukes3597 I'm 49, 20 years into this, I believe I am healing. I may very well be into menopause when I am finally recovered. But it WILL happen :D
This would work if the issue is deconditioning, which is the idea behind graded exercise therapy. That we're "afraid" of movement and exercise and our bodies simply got out of shape. Sounds like that was Sophie's issue, since she was overworked, overexercising, and underweight. But if you started out active, but had to gradually remove exercise and housework and exertion because you crash whenever you do something physical, it doesn't make sense. The "backlash" you might receive from promoting exercise to ME patients is because it harms people who indeed have ME, and it trivializes our horrible illness. ME has a biological catalyst that is not understood because it's hardly researched, largely because of the idea that it's not a real illness. Simply adding in movement is not going to address this biological issue. This kind of thing brings up a lot of anger for me, because I think it promotes the idea that ME is not a real illness and we're just psych patients or neurotic. And yes, I can "wrap my head around" body-mind connection and I've been into alternative medicine, meditation, etc since the 90s. I'd wager for many of us the issue is at least partially emotional trauma and abuse, so yeah, mind-body connection is major. But GET is not going to fix it for most of us.
I would like to get more feedback from bedridden patients also on this approach. My 27 y/o is and has gotten worst by doing small amounts of movement. He can not even chew food w/o getting a crash. How would exercise therapy look like for him? I will read Raelan's book before making judgement one way or the other.
Thnx for this. What’s her insta pls?
Glad you enjoyed it! It's @sophs_ab
Have you ever heard of Dr. MICKEL IN THE UK?
I haven't, no. Who is he?
@@RaelanAgle a therapist that helps people with ME, look him up on TH-cam, he helped our daughter back in 2010, sadly 4 years later she crashed and relapsed, and has been housebound Bedbound ever since.
Dr mickel is a fraud
@@dommccaffry3802 I'm interested in why you say that, can you explain it to me?
I did Mickel therapy for a while.In a nutshell it was like assertiveness training where you learn to react differently to life situations.I do know one person who recovered from doing it but it didn't work for me.
By far they could be cut in half. 2.0-30 mins is enough to share
Very sick people are consulting your channel for advice I don’t have an hour to listen to one persons experience
Happy that Sophie was able to pay the high fees for private healthcare. For those of us who cannot work and whose families cannot afford thousands of pounds we have ZERO medical help.
No offense but these videos are just too damn long.