The Truth About Chronic Fatigue Syndrome & Exercise (That I DON'T want to tell you!)

[@RaelanAgle]

As always, I would like to stress that this is only what worked for me. I am NOT saying that this should be anyone else's approach to ME/CFS recovery. I have no idea how anybody else's body will react to this. I am simply sharing my recovery journey so that others can at least know what is working for some people. Always do your own further research and consult your trusted healthcare professionals before considering anything that I share here. ❤️ And stay awesome, my friends, and know that I am sending hugs to you for your own recovery journey!

[@RaelanAgle]

And I'd love to hear your thoughts on if and how exercise has played into your own recovery!

[@chronicallycrocheting]

This is a very slippery slope for some people. I tried GET (basically what you are saying) and went from moderate ME/CFS to very severe ME/CFS for a year and a half and now I have severe ME/CFS for the last 4-5 years and never went back to moderate. So hard to know what will work for each person without pushing them over the edge. However it is wonderful that it worked for you and you have recovered from it. 🤗💜

[@RaelanAgle]

I am so sorry to hear that ❤️

[@nataliefarnworth3913]

I don't think she is saying it is GET because if you have watched some of her other videos, she says how you have to be flexible with it and don't move on to the next stage until you are ready and if you don't feel well then you either rest or do some very light, easy movement that isn't exercise.

[@lindapekrul4482]

I have been sick with this for several years now. I've tried to get better by resting and sleeping for hours, but all that's happening is I'm gaining weight, losing muscle tone and increasingly finding movement difficult. I feel a flicker of hope after finding and watching your video. Thank you for your honesty, it makes me willing to try your approach.

[@RaelanAgle]

Sorry to hear about your struggles with this Linda, but I'm glad to hear that you found something here helpful. Sending you all my best - hang in there! You've got this 🌟

[@robinmariecuddlist3353]

You should really interview Toby Morrison with CFS Health in Australia. He has a great free video on establishing and building upon your baseline. It takes into account all activity, not just exercise, as PEM really is an accumulation of physical, emotional, and other types of stress. I think the other thing that’s important to discuss along with exercise is having the right mentality when you are exercising. I know that has to do with brain training, as it is mentally trusting your body instead of worrying about how the movement/exercise is going to give you a crash. When done together, rewiring negative thoughts about movement while you are doing movement really potentiates the benefits for both the body and the brain/mind. Thanks for such a heartfelt video Raelan.

[@m.e.myselfandi5120]

Thank you for vocalising the mental battle that so many go through - that ME isn't a recognised illness so we carry a sense of shame, disenfranchisement, and try to keep going despite our body saying otherwise. Your videos on exercise have put a fire under my butt. :) I'm now doing a lot of research into the why and I'm pretty convinced that my mitochondria will never upregulate if I don't put small stressors on them to do so. Hearing you say 'you're gonna feel worse to get better' has diffused some of my fear. Now to throw all my energy into recovering from my exercise instead of wasting it recovering from watching an exciting movie. :D gonna be boring and single-minded and hardcore! Bless you for sharing your experience. Xx

[@RaelanAgle]

It's tough isn't it - not getting the permission we need (from others and ourselves) to just be sick. Not that we should need it, of course, but it impacts our recovery actions nonetheless I think. And oh my goodness, "boring and single-minded and hardcore" sums up my recovery experience perfectly!! You've articulated that so well. And I'm excited for you! I think fires under butts are a good thing 🙌 I hope you find your path and a way to get past this soon and good for you for taking this on - I know it's not easy ❤️

[@annep71]

This is the sharpest and clearest information I got on this topic so far. Thanks so much for your clarity and honesty!

[@RaelanAgle]

Glad it was helpful, Anne!

[@leilaknight-l7s]

What you say here is so true. I've been diagnosed with Migraines Rheumatoid arthritis and epilepsy, but I've struggled practically my whole life with fatigue and recently because my doctor was not able to find the cause of the fatigue he diagnosed me with functional neurological disorder. When I looked it up. It said it's what neurologists diagnose instead of CFS. In South Africa CFS is not an official disgnosis, so it's very difficult to get treated for it or find anything. So you basically have to work at finding your own medical team if you will for advice.. Because like you mentioned people don't take you seriously. Because I've been suffering for so many years now looks like I'm just lazy and not that I'm not physically mentally and emotionally fighting every day to get out of bed and move around. Some days are good days. Some days are really bad days

[@majahorvat7294]

I started doing one minute last week and now I am doing 2 minutes this week. All I see is an improvement!🙂

[@andybreedlove]

How are you doing 1 year on??

[@majahorvat7294]

@@andybreedlove good, I also started doing Bee Venom Therapy in order to treat Lyme. I can walk now for 36 min every day.

[@andybreedlove]

@@majahorvat7294 wow, I long for the mobility to walk. I have severe brain fog and sensitivities/derealisation.. some days I feel I can physically do more, but the cognitive symptoms and dizziness get too much. I think that’s tired but wired. The body and brain on 2 different time zones. Thanks for replying, gives me hope

[@majahorvat7294]

@@andybreedlove I am sorry to hear about your struggle. I also had so many cognitive symptoms. They all went away after four months of the Bee Venom Therapy. 😃

[@marijanam3342]

Thank you so much for this video! That is the first time that someone told that we don't need to avoid crash all the time to see a progress and that the crash is a part of progress

[@RaelanAgle]

You'e so very welcome, Marijana! For me, although I tried as much as possible to avoid the crashes, they were definitely a part of my recovery process. If some one knows a way to avoid them completely and still recover, that of course would be ideal. I really hope you find what you need to get well and figure out what works with your body ❤️

[@EllaSloman]

Yet more brilliant advice !! .....this video has really helped me as this week I have tried to walk more but have ended up suffering as a result ... However like you say , it will hopefully strengthen my body. After exertion at night , I suffer with crazy chills and brain fog which is the long covid / cfs cocktail .... However the benefits of getting out in nature and using my body outweigh the pay back . You are my absolute go to ATM , especially when I'm struggling so much with this illness . You offer light and joy ❤️ I want and believe I will recover like you and this is my mantra when I mediate too ! Thanks

[@RaelanAgle]

Aw thanks so much for taking the time (and energy!) to share this, Ella! I'm so sorry to hear that you are facing this right now. I hope you find all your puzzle pieces quickly and can put this behind you soon ❤️

[@patrickhall7884]

Hi. Maybe watch Phil's interview. He has some valuable insight on pacing and pushing

[@janielightly1644]

Love this Raelan thank you so much for your honesty, you are giving hope to so many of us 🥰😘

[@RaelanAgle]

I'm thrilled to hear that you enjoyed this video, Janie, and THANK YOU for all of the support that you've been sending my way! 💜

[@janielightly1644]

Raelan Agle 🥰💜

[@jackijasker1463]

I’m glad you are giving the facts of what honestly worked for you- my greatest burden are those who can’t give their shot of full throttle recovery because we are in the thick of parenting/support system barriers and such-so we work on it like you said- at the percentage that we’ve got-- I’m glad you inserted that because that definitely is a big difference toward the ‘possibilities’ and ‘speeds’ of recovery zone-~~~love listening to your experiences and candor on touchy areas...there are still mysterious to this syndrome!

[@RaelanAgle]

Hi Jacki! Thanks for the feedback and your kind words, I really appreciate it. And as you can see, I completely agree with you on this. We can only work within the realities of what we've got going on in our lives, and that of course is likely going to influence our recovery rate. How could it not? And yes, so much to still figure out. I love that we are all talking and working on this together, I think it's the only way out of this!

[@stefanysanchez2874]

Nice Video clip! Forgive me for the intrusion, I would appreciate your initial thoughts. Have you heard the talk about - Dinanlinson Rebooting Health Approach (do a google search)? It is a smashing one off product for getting rid of chronic fatigue syndrome minus the normal expense. Ive heard some great things about it and my mate after a lifetime of fighting got great success with it.

[@jeffy141]

I just bought your book. Your video was too inspiring. Thank you

[@RaelanAgle]

Thank you so much! ❤️❤️

[@DeziDoesIt]

This was such a validating video. I’m a former bikini competitor who’s currently suffering from chronic fatigue syndrome. I’ve had PEM symptoms for almost 5 years and haven’t learned of it until now

[@RaelanAgle]

Dezi, I'm so sorry to hear that you've been dealing with this for so long. I hope you find all your puzzles pieces and can finally put this all behind you soon ❤️

[@annsan1722]

Thank you for this honest summery, it is much appreciated! I am at the beginning of my recovery after being in a mild stage without knowing for 14 years and falling into moderate in January this year. I tried all the tricks I did before but it got worse and worse. After I got to know what it was and learned about pacing I finally had less PEM and less crashes and felt better, but I could watch myself becoming weaker and less capable than ever. So the trick now is exactly what you describe, to find this sweet spot of activity, that is painful on the one hand, but doesn‘t through you back but leads to little, little progress on the other hand. In a way it’s „No pain, no gain“, but on a total different level. You have to be very courageous, but what is the alternative?

[@dominic6272]

I think it's great you have been honest about what recovery requires ie. Time out from work, resources, family, etc. Too many times I hear recovery stories and one can only assume that is the length the person has gone to, but never really knowing. I have a young family and am the main bread winner on a modest wage. I hope one day my family and I will be in a position to put the full time and resources to focus on me getting a full recovery

[@sakurahochegger7001]

Just started with few minutes of light exercise. My fatigue level has gone up but not to the point I had to stay in bed all day. I’m keeping diary what I did and how I felt etc. I’m scared I do too much but hopefully recording my progress will help me realise when I do too much or doing too little! I’m also optimistic too, I never thought to push myself this way unless I came across your video. Thanks so much!

[@RaelanAgle]

This sounds like a great way to approach this, I know that personally I've found tracking things to be incredibly helpful!

[@Naturesrhythm44]

Interesting view on recovery with the exercise and something for me to contemplate. It's great that it aided in your recovery. I'm not sure it would work the same way for everyone. Although of course little is still known about the condition. The way i think of energy expenditure (With CFS) like exercise is that we are already so depleted in energy and if we are expending energy that we don't have we then have to rebuild that energy (crash) and therefore don't have any energy left over to to aid the body to heal, but if instead we build our energy by not depleting it with exercise or anything else that over uses energy then we are building our energy up, and then we have some energy to aid in healing and it keeps compacting in a positive way. That's my feeling for myself but good to hear different view points to think about. I have been enjoying all your videos. Just want to add to what I wrote above as it just come to mind that exercise is good for getting our lymphatic system moving and also for getting our energy/Life force flowing and you mentioned something similar in another video so those two things are definitely beneficial for healing. So yeah movement within our capabilities, slow and steady but not pushing as such. That's probably more how you were referring to exercise. Find people with CFS often tend to be over achievers and push anyway so worried some of them might try and go for a run or something crazy haha

[@RaelanAgle]

Thanks for taking the time to share all of this and I'm ecstatic to hear that you've been enjoying my videos. I sincerely appreciate the thoughts and feedback. I've just been discussing your comments with my husband and we both also feel that conserving/creating energy for healing is important and makes a lot of sense (we're not experts .- just speculating and reflecting on my experience). You make some really good points and it's got me thinking more about the paradox of CFS healing that I've experienced (continual energy depletion leading to recovery). And I feel like I can never reiterate this enough (I have to hold back on making it every second sentence in my videos!) - I completely agree that there is no way to know right now if what worked for me will works for others. Oh wow, do we ever need to use caution with this! I think you are so right -- the over achievers seem to really get hit with ME/CFS a lot and pushing too hard with exercise with this illness could land you in the hospital. For me, there just didn't seem to be any level of exercise that didn't make me feel worse, so I had to work to keep it at that manageable level of "worse". I really did start with about one minute of light activity per day. PLEASE NO ONE TRY AND GO FOR A RUN!! Or I guess go ahead if you (and your doctor) think this is what you need, just know that this is not at all what I'm talking about when it comes to CFS exercise. I do strongly believe that movement is important, so finding that safe level could be a key aspect of recovery for some. All I know is what worked for me, and exercise was one of the biggest factors that allowed me to get my life back. Thanks again @naturesrytthm and I look forward to hopefully hearing more of your thoughts on things in the future 😊

[@kimwarburton8490]

@@RaelanAgle could it have been that as muscles are built, mitochondria are 'born', because they are being made from your newer healthier self, they are able to make ATP more efficiently? As well as the other benefits of exercise. Like you, i started with stretches, but ones that a baby might make (toddlers have the est posture) alexander technique lessons and horse riding, both have stopped now, but i had been doing them these last 2 years because of 30yrs incorect posture Ive found it best to stay within my 'energy envelope', but to still radually push myself within that frame. Typically, im using 80% of all the diff types of energy use combined, i would have it at 50% so the other half can be funneled into healing, but the extra solitude would drive me insane XD When ive persued an exercise regime strictly, i always relapse and quit. But iv always had a significant improvement beforehand. Was a time i could uck out a stable with worse symtpoms than i currently experience XD im kicking myself for not being consistent throughout with exercise (and meditation -no matter how difficult to conquor, 6years woulda made me a pro by now -.-)

[@louisemelin8747]

Malaise what an enemy it is, so hard to give a description of it to a Dr. Wow I admire you for your persistence, and being able to read your body so well. So happy for you, maybe after 30 years I will also be able to say one day I have recovered!

[@boxerdogmum583]

Sometimes I think we should re-name it “Total body inflammation syndrome”. Also, I frequently say to my family “How sick do I have to be before you’ll do this for me? Would you do it if it was cancer giving me these symptoms?” I know that sounds awful, but the sooner I’m better, the sooner I can take over the chores and look after them again.

[@RaelanAgle]

Agreed that it needs a new name! I think it makes it hard for others (and sometimes even ourselves) to really see how serious of a condition this is.

[@jeffy141]

Wow amazing video and very touching. Love the honesty.

[@charmainebacke7888]

Thank you for sharing. The most helpful post of all for me.

[@agylena]

The number one criterion for MECFS is exercise intolerance. If someone is made better with exercise then by sheer definition, they do not fit the criteria for MECFS. I wonder whether they have post viral fatigue instead or lifestyle related fatigue that responds to lifestyle interventions. 70% of pwme in surveys have shown that exercise has made them worse. The remaining: either no difference and a tiny proportion were made better, which would indicate that they probably didn’t have ME. Many of us were athletes before this horrendous condition. Many of us continued to push ourselves to exercise and continued to deteriorate. I would categorically not recommend that anybody with this condition pushes themselves to exercise. Being able to do an activity within one’s energy envelope is a completely different thing but if you are pushing yourself to do more than able, then you will not get better unless you obviously do not actually have ME. I cannot wait for a biomarker so that we can weed out the people who do not actually have the true disease. I am glad that your disclaimers are prominent but I don’t understand why you advertise exercise as a cure for your ME when you know (or should know) the history of the pace trial and the devastation it has created for this community. I think it is highly inappropriate. There will be a lot of people, perhaps new to this disease who will make themselves worse directly as a result of these videos. Your disclaimers won’t change it because people want to believe that they can push themselves to recovery. That is unfortunately a stage of the illness that can be classed as denial and lack of experience. It will also be seen by others who will think the rest of us still sick are simply not trying hard enough and are not pushing ourselves enough to get better. I have seen one of your previous videos on your most basic exercises for patients with ME and I was gobsmacked. As a former fitness professional, those are exercises I would recommend to deconditioned HEALTHY clients and never in a million years to ME patients. I would not have been able to do those exercises even when I was mild without a serious relapse. I’m sure your intentions are good and I’m sure you are a very nice person but again, I really think your exercise videos in the context of this devastating disease whose most prominent feature is exercise intolerance are incredibly inappropriate.

[@harperevelyn81]

These are interesting points, I think her explanation starting around 9 minutes in is very important to her explanation of pushing herself. I'm new to having ME but I have seen improvements putting some of Raelan's information to use, and I am utterly thankful for that. It's an extremely complicated illness that impacts everyone differently. Perhaps more important to recovery, everyone has such different support systems and stressors while recovering. Raelean had the ability to almost 100% focus on recovery for 2 yrs and that needs to be taken into account when considering what worked for her. Raelean(sp? Sorry) please keep telling your story, everyone needs to take responsibility for doing their own research and identifying what works for them.

[@agylena]

@@harperevelyn81 I’m sorry but I categorically do not agree that any person with ME will benefit from this and I’ve made all the points above that already explained why. I wish you all the best

[@charlottewood2102]

Yes thank you. I have spent a few years with ME and I have spent a LOT of energy looking up what works and what doesn’t for people, and researching as much as possible, and this video goes against everything I understand so far, and against all of my experience, and any advice I have (rightly or wrongly) been given and I’m just confused. I spent all of this video (and some others of hers) wondering if she actually had ME but her descriptions are so good that I’m thinking yes, and this worked for her so it might work for me, but in another video where she does a dip whilst leaning on a sofa and pushes her weight up with her arms as a STARTER exercise I’m like what the hell? I couldn’t do that now and I am a LOT better than I was. I think your comment nails exactly what was bothering me and outlines exactly what I was thinking, but much better put. I am SO glad that it worked for her, but this video was pushing me to make me think I should be forcing myself to do stuff all the time, when everything in my knowledge and experience tells me not to. I am wondering if perhaps there is are different types of ME, and she had a type not like mine, but I don’t think I should ever try this. I think this will make me (and a lot of other people) substantially worse.

[@BelovedShift]

You will never recover with these ideas, this is not your channel, ty Raelyn 🎉 you are amazing!!!!

[@charlottewood2102]

@@BelovedShift oh, so you’ve personally recovered from CFS? I’m intrigued, tell me more. What worked and what didn’t? Did you follow all of Raelyn’s videos and advice? How did that work out for you?

[@setitheredcap2677]

I've been doing resistance work with bands for about a week and I can already see myself getting stronger. I could barely walk across the room and now I'm able to do this at least 3 times a week. Yes, your body pays, and I may need to crash on the couch -- I see that as part of it -- but slowly and surely, I feel I am going to get stronger. Alonside a wholefoods vegan diet, I am able to much more. In a lot of pain constantly, but it's a much better feeling. Hopefully, in a year I can come back with bigger results.

[@joytotheworld6804]

Good tips. I had undiagnosed ME/CFS, at the time I was also diagnosed with breast cancer. And I'm a single Mum of a son. And I don't have a very supportive family. So, yep, I had to have 17 rounds of treatment, radiation, surgery, all whilst having an underlying illness which caused even more pain. Cancer patients don't automatically get more attention because it's a more recognised disease. Nup. The support is not all automatic and is means tested and mostly forgotten in my case. I did it and I'm not sure how. Then I did four years of training, trying to get fitter from what I thought was the cancer treatment, but I didn't know I had ME/CFS, didn't understand the pain flares were because I was doing too much. Then I had emotional stresses and fell in a heap, huge crash. Which is where i'm at now. Don't push through, just don't everyone is different, no one knows enough about the disease, how long remissions last, don't, 'push.'

[@RaelanAgle]

Wow, I am so sorry to hear about all that you've had to face. I can't even imagine how difficult that must have all been. And great point that we all have our own unique things going on and have to find our own path to recovery. Over the years, for me, it was a balancing act. I had to push hard enough to make progress, but not so much as to crash. But like I said, this is just what worked for me. I'm glad you're listening to your body and figuring out what works for you. Sending you my best with all of this and I hope you find everything you need to keep going with your own recovery 💛

[@sonny7987]

That was the most informative video from u. Another question is do I have to do same amount activity daily through out the recovery process? U gave me so much hope today . I have been sick 10 years now !

[@bethdawn7820]

This is amazing!! Thank you for sharing this!

[@RaelanAgle]

Oh I'm thrilled that you found this helpful, Beth!! 💛

[@audreyrose1660]

Unfortunately I don't just experience PEM. I experience a full on crash every time. If I exercise for 20 minutes holding back by not going too hard and I'm debilitated for over a week. Which I can't afford to do with kids. It really sucks.😭

[@RaelanAgle]

Oh I'm so sorry, Audrey. That sounds horrible and frustrating. I can't even imagine how challenging this must all be with children. For what it's worth, for years 20 minutes was too much for me too. Of course I don't know what will work for you, but for me I had to start with 1-2 minutes of exercise at a time and VERY slowly progress from there. I was doing so little that it didn't seem like it could possibly be helping, but it was. Now - even 1-2 minutes might still make you crash and I don't know what's best for you. Just sharing my experience! Wishing you the best with all of this ❤️

[@stanjz]

You make me laugh(internally) when i see you make a bicep pose. You also made me think of Lee Haney who improbably changed the shape of his bicep at a late stage in his development. He used the Weider Priority Principle to do that. It basically says to train your weakest body part first when your energy and motivation is highest. I used that to go from be really slow of foot my whole life into my late twenties to being really, really, fast. I found out afterward that my mom used to beat the boys at racing when she was young( it was in my genes/jeans the whole time ;P.

[@gloria7290]

How did you deal with the daily PEM generated by your exercise training program? Anything you can share that would alleviate your symptoms?thanks for your channel, it is so needed!

[@RaelanAgle]

Great question - for me, short answer is rest. Long answer is all the things that I was generally doing to support my body seemed to help. I cover a lot of it here kzbin.info/www/bejne/d4unf32cnq2MgdE

[@Tiffany-l2c]

Make sure you check ferritin levels. Optimum level should be 100 for male or female.

[@cato1708]

I've done a lot of exercise during my periods of milder ME as I used to exercise a lot before I got sick. Sometimes it helps, sometimes it get's too much and sends me into PEM or even crashes. My main problem is that the primary symptom I get during PEM, is insomnia. Which leads to the PEM reaction escalating into a crash. This has led me to take a more conservative approach with less pushing. But also more anxiety after exercise and a lot slower recovery. But crashing is even slower. Any thoughts on this?

[@captmorgan2063]

I can do long walks, but I miss my weight training I try to lift weights for about 20 minutes about half what i use to do and i get lightheaded, shaky , anxiety, weak, and i feel bad for next couple days maybe I need to back off even more and I have unexplained food sensitivities.

[@niadennis8837]

Sometimes I can play tennis for 2.5 hours and nothing happens or wash dishes and be down for 3 days.

[@RaelanAgle]

Sounds frustrating!

[@bizzyfit2128]

Okay, this gives me hope.

[@kirstym9030]

I agree with these other comments. Most of Raelen’s videos I find very helpful but this advice seems very dangerous. There are other videos where she describes her program where she says she did light weights for a minute a day, then a week later increased it to 2 minutes if she was okay and admits the progress was slow but she got there. This video is contradictory and seems to be promoting crashes. I’d like to see this contradiction addressed.

[@Tiffyshea23]

Where did you hear the stat about 95% of people not getting better.

[@RaelanAgle]

Hi Tiffany, it's a stat I see quite a few places (though I don't personally feel it's accurate). Here's one place: me-pedia.org/wiki/Prognosis_for_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome

[@kimwarburton8490]

iv seen it too. i think recently on 'phoenix rising', tho possibly 'me association' also says it. i reckon NHS does too thinking on it

[@SleepDisorderedBreathing]

Can you describe what deconditioning felt like for you? I have really weak lungs and I want to know if you had that too.

[@djesun1]

Hi did you have any coach in this graded exercise? Would you be my coach?

[@RaelanAgle]

Although I suspect it would be advisable to have a coach, I didn't have one myself. And I'm honored that you would ask, but unfortunately I don't do coaching.

[@djesun1]

@@RaelanAgle thats too bad ;)

[@jayverasummer]

This is a super specific comment, I know, but is there any way to block certain advertisers from advertising on your channel? I'm trying to watch all of your videos, but sometimes I just listen and walk away from my computer and it's super stressful to have the Sandy Hook Promise guy randomly come on and start talking about kids being shot to death in school in the middle of the video. And it happens pretty much every time.

[@Lozzness]

Please be careful not to encourage GET for CFS, it can make people severe .

[@tatiana105]

🙏❤️🙏

[@RaelanAgle]

Thanks, Tatiana! ❤️

[@nicoleiron9028]

Hi how are you? Was your chronic fatigue syndrome caused by Epstein barr virus?

[@RaelanAgle]

Hi Nicole, no it wasn't (not to my awareness)