Q&A: Is Exercising Bad For Someone With Chronic Fatigue Syndrome 

Hey all thanks for watching! Before you even think about exercising and movement Check out our free baseline training! cfshealth.com/baseline - this will help you avoid the push/crash cycle and help you move forwards appropriately for you!

I do 5 pushups and lose a week of my life. I go to a party and dance for 5 hours with no breaks and I wake up the next day and it feels like nothing different. For me the biggest frustration is how hard it is to predict or find a pattern.

been sick w/ this for a little over 20 years....what you have presented is pretty close to what i learned through experience: it's important to regularize one's daily routine to take as much stress off the body as possible (biological events such as eating and sleeping and even using the toilet should be become predictable, planned, and timed daily events). Also, regarding stress...one can minimize the impact of stress when one reminds oneself, in the middle of a stressor, that 'this stress right now is actually worsening my condition and being sick is worse than this stressor'. I've found that to be effective because NOTHING feels more important than just feeling a little better- everything else becomes inconsequential by comparison. Let me know if this helps.

You restored my faith in "ME/CFS-gurus" (pardon the term). You are the first person ever who doesn't make me want to start lecturing about how its not nice to give people false hope. As an ME patient, CFS is only one of the symptoms but I will be the first to support continued movement. I've seen too many other patients just get worse because they gave up. Maintaining what I can do now is my mission, and even if that is just walking up and down to the supermarket every day, its a start. Giving up isn't an option. :)

Diagnosed 1999 with CFS, exercise intolerant. Over many years, less active and more winded. Heart attacks beginning May 2014, simultaneous COPD diagnosis. The thing that has saved me is rehab including physical therapist intervention. December 2014 I could barely stand, let alone walk. The PT made all the difference. WALKING was key, and supervised intervention was critical. Moving is critical to combat the deconditioning.

Hi Toby, I never get tired of hearing these reminders on my journey. Thank you. Your program has helped me tremendously.

This is very encouraging. 10 months into longcovid and I'm really struggling to stop busting and booming. Finally I'm taking pacing very seriously and trying to find that illusive baseline. Thank you for your support.

I spent 7 minutes on my elliptical the other day. Slept for 2 days. I haven’t learnt my lesson after over 3 years.

Dead on. Wish I'd seen these when I first got CFS

You drew the baseline as a straight horizontal line. The problem we have is that the baseline is moving and the onset of symptoms are delayed, meaning we only know where the baseline is after the crash has happened. Some days I feel well enough to go for a ten minute walk and I'm fine, sometimes I'm well enough to do a 10 minutes walk and crash 2 minutes in. Also, most of need to work, cook and basically... survive, making it really hard to plan how much movement we do against this invisible baseline. I'm not saying it's impossible.... it's just really really hard to do. Harder than anything else i'll probably do.

Absolutely brilliant motivational video. Listening to you gives me hope because where I am right now feels hopeless. Thank you for your advice and guidance.

I hate this disease. I exercised too much for 6 weeks and now have been in bed for 3 and sick as hell. Thank you for this video.

Thank you so SO much for this gold infomation!! I have csf and have been recently diagnosed with type 2 diabetes and was searching for exercises, more specifically, zuma or dancing exercises, all of which are high energy, high impact movements. Oh em gee! Its a good job that I stumbled across your video otherwise I am sure I would have had major payback! What you say makes so much sense and wish you were over here in England...sniffle. Thank you so much for sharing this video

This video is incredibly hopeful! Thanks so much!

This is exactly what I've been looking for! Thanks Toby 😊

Good stuff...you make a lot of sense and give an aura of credibility.

Can’t thank you enough for your knowledge and support 🙏🙏🙏 Bless you for your calm, beautiful soul giving so much to so many. I need to start a daily routine and structure. Pace and progress. Less is more. I like it.

Your video has brought much awareness and peace to my challenges.

Thank you so much Toby.I really needed this..If I get to look half as fit as you I will be happy..xxx

This is so helpful! Cant wait to try it!! Thank you!

Your info is lifesaving. Thanks so much for your work and sharing

This was so very helpful. Thank you!

Hi Toby, Thank you for putting this info on youtube, I have a daughter who has just been advised that she may have CFS and certainly everything that I'm learning about it seems to fit. She is 12 years old and has been poorly for over 6 months, the more I learn about the condition the more I'm convinced the signs were there before although not severely enough to really impact on her activity levels. She in the last couple of years has been off doing long hikes in the countryside, up and down mountains in the Brecons and cycle rides up to about 12 miles with me, so it has been difficult for her not being able to carry on with that and having missed a substantial amount of school in recent months. We finally got to see a pediatrician who feels her chances of recovering to her previous health levels are good, so we left feeling quite positive about her future. I'm sure that when I show her your presentation she will find it of benefit and the advice you give is similar to what the Dr is advising. I've bought her an activity/sleep tracker and will be signing her up for an app that will work in conjunction with it to help her manage how much she does, I'm thinking the baseline etc that you mention. While I feel positive about her prospects, I feel for those others who suffer to a much greater degree with the debilitating consequences of CFS. I'm sure your presentation will help my daughter and countless others, so thanks again for posting it on youtube. Steve Bridger

Good information on progressing. That’s been the hardest part for me to stay consistent on. I have my baseline routine but not a solid plan for my progressive movement. Thank you for the tips. I will work out my plan tomorrow. (I’m also doing oxygen exercise therapy on a stationary bike and I don’t feel tired at all after this.)

I so relate to everything you said in this vidio. I will put a movement plan in place. You are bloody Awsome Toby. I can not thank you enough for this...xxxxxxxx

Thankyou Toby... I don't have CFS but have severe depression & anxiety... Some days I just can't get out of bed and am just dizzy, headaches, body aches, so so tired, sick, sore chest, panic attacks and the list goes on but this video has made sense to me!!! I have had a couple of good days and yes, do everything!!! Then you guessed it - crash!!! I follow all your videos and emails as the give me help with myself... I would love to come and see you one day but am just awfully afraid... My life turned upside down completely... I was the fun, outgoing, friend to all, hard worker now just messed up... Keep doing what you're doing... It helps more people than you realise... One day I will get the courage...

This is the kind of video that makes me worried that someone with true Myalgic Encephalomyelitis will see it and suffer or die as a consequence. The very flawed "PACE" study in the U.K. preached the same "graded exercise" theory and the harmful results to sufferers in the M.E. community are legend. (The PACE study has now been discredited) M.E. / CFS is a multi-systemic, patho-neurological illness that creates many symptoms in it's sufferers other than fatigue. Among them are cognitive disorder, gastric problems, orthostatic intolerance, vision impairment and cardiac irregularities. Many sufferers are completely bedbound with many, many more being housebound. Because of the cardiac issues in severe M.E. patients, exercise at any level can be life threatening. So can a cognitive episode caused by exercise be life threatening if it occurs, let's say while driving. In most patients, other than those with the most mild form of the disease, exercise will exacerbate any or all of the symptoms other than fatigue. Being chronically fatigued can be caused by many things other than M.E. / CFS. Depression, Seasonal Affective Disorder, MS, and cancer all come to mind. A depressed person or one with S.A.D. can benefit from exercise...so can some cancer patients. But, to recommend exercise to people as a treatment or cure for a disease whose complications can be harmful is irresponsible. When I read an article or watch a video like yours, my first question is: "Did this person have a clinical diagnosis of M.E. / CFS?" I am a 13 year sufferer of M.E. (Diagnosed) When I was first stricken with the disease at age 58 I was in the midst of a very active lifestyle that should have aided in protecting my health. For decades I had bicycled between 8,000 and 10,000 miles per year. I was an avid backpacker, cross-country skier and runner. I am not alone. Many of my fellow M.E. sufferers were athletes. One from my M.E. / CFS support group was an Olympic swimming hopeful! So, recommending exercise as a treatment or cure for M.E. to people like us simply doesn't pass the common sense test. To recommend it to anyone with this disease is irresponsible. I recommend the movie "Unrest" by Jennifer Brea if you want to know more about this disabling disease. It is available on Netflix.

Thank you for making this video. I was diagnosed with CFS and Fibromyalgia in 1997. I never thought I would become mostly bedbound because I took supplements, ate healthy, exercised when able, and stayed informed via support groups. However, having a support system is the most important thing. If you can't get food, water, and supplements on a regular basis you will die. No one seems to take this dreadful disease serious. I am giving up hope due to the lack of continuous support needed for survival.

Great video!

Thank you so much! I have really severe chronic fatigue and am currently lying in bed with bad brain fog and complete exhaustion. everything makes it worse and makes me nauseous. so it's great to have someone who truly understands and is willing to share their support :)

Excellent video can you do a video on the foods and quantity you eat for a week to enable weight training and vitamins and supplements you take to keep your body free from fatigue?

Zone 2 (60 to 70% of max heart rate) has been the sweet spot for me to gradually build a tolerance to everyday life for the most part. Some people claim that zone 2 has a beneficial effect on mitochondria and that it builds an aerobic base for more vigorous activity. I mostly avoid more strenuous workouts but nowadays even if I overdo it the effects are immediate and short-lived. Like I'll feel normal again in an hour or two. I really feel like the hour per day of zone 2 has helped with that.

My physiology test results concluded that even a "yoga" routine was out of the question, now what. I do what I can when I can. Right now I have a sinus infection and throat irritation, but have no disability support due to denial, so I mange my STRESS my way, do what I feel I can to keep moving, using a walker. Got some good arch support euro sandals, walk less with walker, did to much and crashing now...There is no specialized PT for severely impaired folks with ME/CFS. The ICD has not even accepted it yet....it is hit and miss in this country USA. Recovery, you make it sound like this disease is curable? What form did you really have? There are various levels for sure? What level were you since you recovered? Confused.

Love your work, thanks a lot :).

Hi Toby, I am an undergraduate in the UK, and have been getting cold like symptoms for years, especially after I exercise, and during stressful exam periods. I have had a range of blood tests which have all been clear so far, and my doctor now suggests allergy tests. However, reading some forums on bodybuilding etc the post-exercise tiredness I feel sounds a lot like CFS, and the boom and bust cycles of energy you describe in your videos feels exactly like how I feel. Just cycling to lectures makes my throat swell and I feel tired for hours after. I have mentioned this to my doctor, but I feel like I am getting nowhere. I would be really interested in any information regarding graded exercise routines etc using bodyweight exercises, as I really enjoy fitness, but spend a day or so feeling terrible the day after exertion. Thank you so much in advance. It is amazing to hear someone talk about the things I feel.

Brilliant advice, thankyou. I have been feeling so well so want to get toned again, completely went mental, as usual and had two flare ups after so now must take a slow approach. Just frustrating like the illness.

Interesting video, nice to watch it. Thanks for making it :) You suggest to exercise also if i am on medication daily or in that case is exercising totally helpless? Cheers

Thanks man, good advices

This was brilliant. It’s common sense and yet it’s not how I live. Thank you!

Really helpful, thank you.

Hi I have finally got a new G tec vacuum cleaner and although I had been saying my old hoover wasn’t heavy I can’t believe the difference there is little effort required to push it around, I can manoeuvre with both hands and I have found I use it most days for 5 minutes which is helping my trapeze muscles and it is also satisfying as my kitchen floor is very clean 😀

I am very discouraged by the up and down feelings of fatigue and weakness during the day. I have suffered with this chronic fatigue and hypothyroidism and fibromyalgia since since 19 95 and I am very tired out!!

Thank you so much, Toby. Your videos gives me so much hope for the future, and make me believe that I will become healthy again. I'm 18 and have had CFS in 2 years, I hope to do whatever I want to do some day. Do you have faith in me, that I can do it?

This information is so useful. I have been traveling the world on my youtube channel now i am housebound. Thanks

Thank you ❤

thankyou so much 4 your help

I can totally relate to the push and crash. I had to learn with physical therapy to do a few minutes exercise at a time, and very slowly build up. By the way, along with the exercise intolerance I have orthostatic intolerance. :(

Toby, I've recommended your video channel to so many CFS sufferers worldwide. You're really inspirational. Unfortunately there seem to be a lot of people out there, particularly in the US that are not getting appropriate treatment and are actually being denied that it is a ligit medical illness! thanks for spreading positive awareness!

Toby - Do you do one-one-one Skype sessions? I'm based in the UK but would love to have some coaching through my own journey. Quick question... I'm currently working full-time and have been throughout the last 10 years (for the most part). Do you think I can recover while working a full-time job? I am really struggling and although I can get through some days okay, I have others where I can hardly function at all. Thank you in advance.

What if you have insomnia ? I still walk around my home 5 mins twice a day, and lift my arms up as i walk, is this ok ?

thank you so much for your video my son is 17 and had his legs recontructed and is having a hell of a time with chronic fatigue and his legs are so skinny now. Been taking him to the mall and he likes that ..he walks as much as he can but the dr tells me not to do that and just to take him swimming. only allow him to walk on grass. etc.

How do u deal with the crashes after math? I totally get all the movement good exercise good healthy foods etc. But I have chronic fibromyalgia and joint hyper mobility syndrome (my tendons are slowly calcifying /turning to bone) I pace myself I do a balance of movement but on bad days it’s so much agony I barely can and I still get a crash regardless of a baseline. True pain can effect sleep too and as a female periods too cause severe bad days crashes. “Good days are the days I can actually move without crying! Im always in pain always tired but mentally stay positive as I learnt mindfulness. I just cannot find a way to not crash and not up /down even with structure. Even mild stress impacts heavily. It’s impossible to “exercise” on severe bad days-it’s why it’s called disabled/ un-able. I totally agree movement is key-i have physio too etc. But joints still calcify/freeze/crashes still happen etc. I think helping the mind,acceptance of your disability is healing not constant pressure to “fix””cure” etc. Learning to accept is part of positivity. There’s not always “recovery” but there is a better way to “manage” pain/fatigue. I agree after 11 years there has been a better balance for me and percentage more good days than bad since learning pacing. I agree a lot with your philosophy just feel it should be more about managing rather than recovery. For me by focusing on how to be my own manager of fatigue/pain and letting go of thoughts of fixing, it helped my positivity hugely and can now see improvement although it’s incurable I have improved my well being and manage being disabled better. Just wish the crashes would go away but I accept they happen and I’m kind to myself and let myself rest a lot. I agree movement even on bad days important, just can’t seam to stop bad days. Such is disability.

It really is about taking babysteps.... it's boring and frustrating a.f. but if you maintain a good schedule, eat well and sleep well, this exercise thing helps. Avoinding stress is nr 1 tho... and many of us can't afford to avoid stress. But if you can take a few months off of your job, quit your job, send the kids to your parents for a few weeks, ask your husband to help at home.... do! Because not going all-in with battling this condition (slowly), it will take forever to heal... I've had fibro and cfs for 10 years now. Ruined my 20ies. Not going to let it ruin my 30ies!

Can you do an exercise come back program for weight training post illness?

Have any of you guys tried virgin coconut oil (VCO)? From my experience, at this state of body, VCO is the only nutrient readily absorbed for energy. It is also a broad antifungal, antibacteria, and immune booster. So, depending on your cause of CFS, it may help providing you the energy, or it may even cure the underlying infection. Unless, it is caused by tooth infection in which extraction is the absolute cure.

What about every other day? I find I can do gentle stretching every day, but that is not giving me the strength I need. I need to push a bit -- and I find I can manage about every other day. But not every day --- if I do every day, I start to experience pain and a hard time recovering.

I don't know if I should exercise or not.

So how do you do it with avoiding PEM? This just sounds like slow GET. I've a few of these videos but i still dont get how exercise is supposed to take an illness away.

Well I've just laughed my way through this video because it may aswell have been titled "JAC...STOP!!!" lol! I'm a bugga for thinking "Ooooohhh energy, lets go do something".... I've never learnt the art of pacing!...hhhmm! I am boss lady at a Centre for people with learning disabilities and we have been manic with one thing or another this last month. I'v decided I'm going to take next week off to concentrate on little old me....I will admit I have a mega party to got o next weekend and want to be well enough to go, but my compromise is, rest all week :-D

Everything you say in this video and other videos makes absolute sense but how do you start. I have CFS and Fibromyalgia and have had it for 12 years, I have had CBT and that help me to come to terms with this horrible illness. I am thankful that I am able to still function to a level but always in pain. I do attend Aqua aerobics and it helps but when I am tired I struggle to find the motivation to go. I want to stop taking the amitriptyline, co-codamol which help me to sleep but doesn't take the pain away completely. I actually describe how I feel by saying you go to the gym for the first time, you work really hard and the next day you can't move, well I feel like that everyday. I really need help but scared, too may other people want to cure me but want thousands of pounds for programmes, they call it investment in yourself. I cannot justify spending that money. I watch your videos and read your emails everyday and think why can doctors suggest things like you do?

I have had Chronic Fatigue Syndrome for 2 decades and I have not been able to get a diagnosis in all that time.

What if you have orthostatic intolerance? When I stand or move my arms my heart beat shoots up from say 52 to over 100 in seconds not minutes.

After many, many years living with M. E. I have tried every treatment/supplement/diet/therapy/programme out there including graded exercise a number of times and nothing works.

for me I've been ill 12 years so I'm pretty deconditioned but try to exercise here and there. I lightly hit the weights walk fast jog lightly. but what I've noticed sometimes when I swim ride a bike try to keep my target heart rate at a certain for example using the treadmill where is change functions to keep the heart at a certain number is it says it on manual I can pretty much power walk job for a little bit I just feel like my heart's racing that's it. keeping the heart rate up for a while it becomes intense and I usually so fatigued just like being on a bicycle for 10 minutes or more I start feeling very fatigued the whole day yeah I can do other exercises and be fine. just like last night I did this 21 Day Fix I did a full body workout 30 minutes with weights the next day I still feel fatigued it's like feeling very exhausted I've had it at times I feel like I'm going to die my whole body just so sweet and dried out. just like I did a stress test on a treadmill years back I was exhausted for 2 days. what I've noticed is even after I eat I might feel good for a little bit but it comes back in waves. so I'm assuming this is chronic fatigue. it's just strange because I jogged a mile in 12 minutes and I haven't done that since I was a kid and I was fine. so my question it seems like exhaustion is there anything that I can do counteract the extreme exhaustion feeling

Hi, The crash comes to me after a few weeks of training (interval jogging program to 5 Km) when it first looks likes im getting fitter and better with more energy. That why it is hard to tel when i'm crossing my "line" How can i see the crash coming?

Hi Toby. I like your video and believe 100% that this approach is the correct one. However, when you say that you should increase movement by 5-10% every 3-4 weeks, if you do the math, it will take three years to improve to 30 minutes. Am I missing something? Do you mean that you step up by 5-10% every 3 weeks in the beginning, then do it weekly? I've heard others doing this every week, but could you please clarify?

I was diagnosed with ME 3 years ago and don't relate to what you describe as ME/CFS at all. Are you talking about Chronic Fatigue or ME/CFS, both very different things? I was lucky in that I got this illness recently and so had lots of info to call upon. I was able to incorporate a healthy diet and was lucky enough to be able to rest and remove as much stress as possible from my life but I am still ill, because it is an illness, not something that can be exercised away by a movement program. ME/CFS is not deconditioning but a multi systemic illness of unknown cause. Suggesting that someone with ME/CFS could be running in 12 weeks by building up gently is frankly ridiculous. It's like saying someone could exercise away cancer. You talk about not having the strength and stamina to do daily functions and fun things but this is because we are ill, not because we are not doing a movement program. It's this type of information that gives ME/CFS the stigma is currently has. ME requires research to find the biological answers to the illness, not movement programs.

I have had fibromyalgia and joint hyper mobility for thirty years. I have had every kind of therapy there is. Specialist advised not to do chiropractic as this was not helping at all. Three years ago I had Cognitive Analytical Therapy which helped enormously as I had written my car off but survived without a scratch! My joints are now extremely painful but have now found Body Conditioning Pilates and the Alexander Technique. After a year of homeopathy which didn’t work I find the two exercise practices I just mentioned are making me feel more hopeful for the future. Exercise is challenging for me but I advise others to try yoga, Pilates or Alexander tech. Xx

wrg, still understand

I havnt been able to exercise for 12 years, I get incredibly unwell if I do 😢

I’m so glad I found this channel. I have fibromyalgia and all the doctors I’ve seen told me to exercise and I’ll get better. So I do exercises from cocolime fitness (another RU-vid channel) but I don’t feel any better and I keep gaining weight. I’m glad I watched this video and I’m going to try everything you said.

how long where you ill?

🙏

Hi. Is your programme for SEVERE bed bound ME/CFS/Fibro/POTS sufferers? Thanks

Unluckily, I have so many responsibilities that suck up my energy that I am never really out of a crash state. Damned disease and 20 years of my life lost.

what about moving when menstruating?

Rubbish! for many of us getting from one room to another. You certainly can not do it on your own...dangerous. Showed this to my Neurologist...Professor at Baylor Universty Hospital Houston Texas. His reaction "Patients??? " "My job is?" He was not impressed at all!

Iv tried emailing you but I didn't get a reply

try release adrenaline and chortisol.

Today is my last day of physic therapy and movements, joined a scientific program for people with chronic lower back pain. Last Thursday's exercise was too heavy actually. Whatever I do too much with my Fibromyalgia, causes me to crash afterwards.

Subtitles would really have been helpful. Not the clearest articulation.

we are ill enough we dont need to be told in a sneaky fashion, to engage in graded activity. a lot of what he is saying is mumbo jumbo, do you have the supportive evidence or research to back up your claims and your recommendation

To many words.Try to focus to the esence.

Nope im not letting cfs hinder me going to the gym, started with 5x5 3x a week

No exercise works for me. Not even light yoga stretches. I have severe nerve pain for weeks after. Even walking causes nerve pain afterwards. I dont believe there is recovery. My goal is acceptence