If you are actually able to get out of bed at all, and suffer from that boom and bust cycle the best thing you can do is incorporate rest periods into your day. It gives you time to notice how you are feeling. It gives you a chance to notice that maybe you’re pushing yourself too hard. And it allows you time to calm yourself, de stress and move forward in a more productive way. Pacing is incredibly important. If you have 3 activities to complete in a day, that each take an hour, break them up into 10 or 20 minute chunks. Spread these chunks throughout the day so you’re not just doing one thing until complete then the next, then the next. One task may have a physical demand where another has a mental demand. Breaking them up into manageable chunks and spreading them throughout your day will help to maintain consistent energy levels. Don’t over exert yourself. It’s easy to push too much when you’re feeling okay but that only aggravates your symptoms and makes the down time worse. Pace yourself, delegate tasks for now, and maintain a consistent lower output of energy. Once you do this and have got to a point where you’re avoiding major crashes you can start to do more, gradually. Maybe add a few minute walk into your day for a week or two. Make sure it’s sustainable and you do it for at least a week before extending the duration or adding something else into your day. Another huge mistake people make is to assume that because they’re tired they need more sleep. You’re tired because you have CFS. 8-9 hours is enough sleep. Any more and it will make you feel worse in the long run. Over sleeping is well known to make you feel more tired. If you are sleeping for more than 8-9 hours set an alarm and get up at a time that is manageable every single day. Getting up at the same time is far more important than when you go to bed. Go to bed when you’re tired but make sure you get up at the same time each day. Even if that time is mid day, it doesn’t matter, keep that time consistent. Once you can do that, you can move that alarm back by 15 minutes. Do this for at least a week. Once you know you can keep that time and you are consistently getting 8-9 hours sleep then again, you can push that time back by 15 minutes. Keep doing that gradually until you are able to get up at a time that suits you. When you wake up, get as much sunlight as you can. This will help to flush out the chemicals that keep you feeling tired. Inside homes is typically significantly darker than being under tree cover on a cloudy day let alone put in the sun on a bright day. It’s dark in your room! Your pupil dilation might trick you into believing your bedroom is bright but it’s not. Get outside for 2 minutes after waking and you’ll feel significantly better for it. Eating good food, maintaining a balanced diet and eating at regular intervals will help too. Not eating enough makes me feel awful! It can often be a trigger for crashes even if you haven’t over exerted yourself. Eat properly! Those are just a few tips that I have. I’ve had CFS for about 10 years. It went misdiagnosed for most of that time but now I’m going through a fantastic program that is so helpful. Only problem is I am chronically de conditioned and have severe muscle atrophy. I’m really struggling but that’s to be expected. You’ve just got to trust in the process and take each day as it comes. Eat well, don’t over sleep, don’t over exert yourself and build up gradually. Taking regular breaks will give you a chance to pick up on signs that you’re pushing too much. Good luck!
I love quiet times when I’m left alone and nothing is asked of me. To be able to sleep and not feel guilty at what ever time of the day is great. Emotionally this can really depress you with your own thoughts.
I think it's very important to mention the fact that these rules apply more for the mild to moderately affected & not for those whose illness is severe. 25% of cfs (me) sufferers have a severe case & are bedridden, wheelchair bound, & completely dependant on someone else for almost all of their needs. The medical community is still in the dark on this & they often give advice that could further harm (& in some cases kill) the patient so it's imperative that correct & thorough information be available. Great info for those who aren't at the end of the spectrum though.
I don't know what percentage I would be, but at my worst I had days were I stayed in bed for 3 days and found it hard to walk up the stairs. 'Graded exercise' 'moderate exercise' are probably the WORST things you can do when you have CFS that bad. I got myself out of that situation through a very restrictive diet and by seeing a chiropractor who said I was the worst case in terms of muscle knots/tension she had seen in her career. When you don't feel 'right' and you feel like your muscles are not working correctly, thats a fucking sign you shouldn't be doing exercise. Listen to your body, it's more intelligent than any 'doctor' out there. I had began having symptoms in 2005 and by 2007 were so bad I had to leave college and was inactive until last year. It was soul destroying trying to find answers when there is no help. I can gladly say that those days are behind me now and i promised that If i ever got myself well I would do youtube videos to help people avoid absolute bullshit advice/products/routines like I did. If you're interested check out my channel and ask me absolutely anything you want.
Woohoo How about spending 7 years of your life bedridden .... except for 2-3 doctor's appointment each year. That was my life until a year ago. I'm still partially bedridden (about 80% of the day spent in bed). The main reason I ended up so debilitated was that my doctor attempted to treat my ME with exercise, therapy, & lot of yelling at me because "I must not be doing enough or I'd be better by now". The wrong advice, given to someone with ME, can be far worse than no advice at all. Most people that end up bedridden for decades were given the wrong advice from their doctor &/or it took years for them to get a diagnosis. The worst advice given to people with ME (CFS in the US) is that this illness isn't fatal.... It most definitely can be fatal. And because no research has been done on the most severe patients, until very very recently, we still don't know how many people have/will die from ME. People making videos, such as this one, need to be very very careful about giving advice unless they understand just how serious this illness can be.
Woohoo I couldn't function in normal life for 8 years and barely left my house. but congrats you're a special snowflake! Alycia there are many things i did that i talk about on my channel - I had to change absolutely everything in my life. good luck!
Hi Toby, i can't even do even do washing, even sms-ing is difficult for me, i don't go out, so as Alycia C says, we have it really bad, please help - is it low/no cortisol levels, are our mitochondria temporarily compromised? Mine is long-term Adrenal Fatigue with M.E. cos have had chronic headaches for 10 years. My doctor put me on Lyrica 150mg to reduce the infllammation and methylphenidate which helps calm me down cos also have adult adhd.
I went from 90 MPH to 5 ......I have ZERO ENERGY & MOTIVATION. I used to meet with my friends almost everyday, that all has ended. It's an event to just check my mail or drive to the store. I'm in constant neck & back pain. I have literally lost all interest in life. I am not suicidel l I just want to be left alone and stay in my bed.....I can easily sleep for 15 hours a day......and still be tired 😴
oh.my.god. if i could function at the level discussed here, i'd be one happy camper. i can barely even keep track of the rapid-fire delivery of details in the vid. (tho toby does seem to care and have experience with "cfs light".) i've been dealing with this since late 1992, but not formally diagnosed as cfs until about a year ago. "get up, get dressed, make breakfast, do the washing, and think about what else you're going to do that day"??? on a typical basis?? are you *kidding* me?? this advice would probably have been helpful 5, 10, 15 years ago when i was still functional, somehow able to hold down a job, keep up the house to a reasonable level, socialize, etc (and then be entirely passed out on weekends and holidays), but it surely doesn't apply now, or only in a minimal way. i totally agree with the commenter who suggested these advices should have ratings for the level of cfs they're intended for.
I'm so frustrated here...... Has ANYONE EVER HAD CONTACT FROM ANYONE after they post here or anywhere in you tube?. Some post are years old.... How do you know if anyone has read what you wrote..dhendriks33@gmail.com
Ideally, I need to move back to my parents to work less and have more rest. Unfortunately, they just think I'm lazy and depressed. I think when I completely crash, they'll finally understand what I'm going through.
Did it work for you? When I took a break, my energy stopped. I started feeling tired. So I believe, if I just finish whatever I’m doing for that day is how I can finish things. Yes, this is not fun to deal with.
Just to say for me it’s not just physical, as you say, stress and mental tasks can deplete my energy levels............ one stress that really takes it out of me are well meaning friends who don’t believe or understand what I’m going through...............
Agree with what a lot of people have written. I wish I’d heard this decades ago...now I’m way past the stage he’s talking about. I’m have a good day very rarely. Most days are very limited. Asleep until midday (or longer), after being awake most of the night. On a good day I might be able to get up the stairs to have a shower or bath...possibly once a fortnight. Most of my time is spent in bed or lying on settee in the evening. My husband abandoned me, divorced me because of the ME and remarried straight away. My youngest son is abroad traveling and my daughter won’t see me, communicate in any way. I wasn’t invited to her wedding. I don’t get to see my grandson. My middle child; son (with ASD) is the only family I have and he’s wonderful but limited in what he’s able to cope with. Had I been diagnosed with this years ago I might have some sort of life now..but I’ve just got an existence. We need earlier diagnosis, support and understanding of this horrendous condition
Hi Toby. My name is Anna. I'm 14 and I was healthy to 100% till I was 11. Then I got a virus and after that I never got better. I got diagnosed with CFS in the beginning of 2016. I found know a really good way to get healthy. I feel way better since I take those extra vitamins and stuff. I go out every day for a walk and just for fresh air and my body, my soul and myself feels so much better. I can't listen to the people who say I can't everyone can I could and I couldn't stand up for months. You just have to belive in yourself and stay positive no matter how bad and how sick you are. That's all I can say.
Didn't even bother to get pen and paper. Too exhausted to even do that. What I'm doing this time in my life is organizing and getting rid of clutter. Maybe this will help me if I have less things and easier to clean. I do like cleanliness. Makes me happy when my surroundings look nice!
Thanks Tony, for training me in this condition. This is causing a divorce, my family and friends. I need to find a good specialist..Right now everyone is classifying me as a Pysche patient. I refuse to take medications
Wow! I need to listen to this every single day. 12 years on, and still think I have beaten CFS, then it comes back to teach me a lesson! Guilty of not picking up the warning signs! Probiotics and kefir and kombucha seem to help. Thank you for you lovely videos.
One day: chopping up vegetables for soup pot, day two: cook soup. Feeding myself properly (low carb) throughout the day, also draining. Socializing is a thing of the past, even minimal time on social media... too many questions, don't feel like chatting. It's a question for me of understanding that I have extreme limits and cannot act like everyone else. If they're not good with that, well, then..... stressing around others who won't listen - nope. This is a condition of learning to listen to self and to stop giving priority to people who may not necessarily care too much about you.
Thank you Toby; Thank God for your work.....millions missing and invisible know you, your work; they just too ill to speak/read....but they hear you. Please don't stop helping us all.
Every activity can one day give me energy and another day deplete me of energy. Resting can deplete me of energy as well. There is a lot of ignorance about this condition.
This is brilliant. Love this channel. The only thing is add is that I think it's good to think in terms of keeping one credit back for the immune system to use
I'm at a point where I can't do any of the credit expenses you're referring to. I can barely handle tasks, shopping, I don't have enough energy for friends or any events. I mostly just lie down or sleep. I hope this gets better. I guess I need to take control and gradually get myself functioning at least a little. The most I can do is walk my dog around the block only because I have to.
Woohoo Yes, I am fighting my 3rd bout of Epstein-Barr virus, and this time, it's lasted over a year. I also have an active CMV infection, as well as HHV-1. It all points to an immune disorder, but my insurance is so bad, it's taken 5 months with a new doctor and I STILL haven't seen a specialist. My old doctor told me I was fine even though the blood tests showed the viral infections and very high inflammation levels. This is a very difficult illness to try to fight when most of the medical establishment either thinks you're lying, or couldn't care less.
Hi Toby this was one of the best videos that I have seen by you I saw it a few months back and I sent it to my siblings and my adult children and I think my older brother was the only one that said "good " except , I think one of my daughters said I shouldn't watch these programs on illnesses because it's not good for me to do that! They don't really understand and haven't for years! I've been bothered with chronic fatigue bad episodes since about 1988, but was diagnosed with thyroid problems and unknown fatigue problems since around 1993. Then a few years later with fibromyalgia and CFS. My now ex-husband couldn't deal with my issues and just tolerated me and eventually asked for a divorce so I went through a bad divorce!! Anyway I'm trying to change my inner thinking and my understanding of my religion and changing my self talk some, and it's helping some. Thank you for this video I think it is very helpful in explaining Cfs !!
No matter what I have done so far: Fitness since 2009, Yoga, Qi-Gong, Breathing Exercises, Mindfulness, Chair Yoga etc...I never know how I wake up the next day with stiffness, fatigue, pain.
Weird that you popped up in my feed, obviously google took note while o was telling my neighbors I had overdone things. Just figured all this out today so it’s good to hear your intonation
First comment I've ever made on a youtube vid. I felt so strongly opposed to some of the advice given here, I set up an account in the hope my experience can help someone. I have had CFS for many years but was diagnosed around 9 months ago. I'm very much on the road to full recovery and I intend to get there. I still have bad days but they are far less often and far less severe. I do not avoid doing anything. At all. Ever. The main changes have been my diet, being consistent with the exercise I do, and changing the way I see life. Although Toby makes a good general point with regards to pacing yourself, I think the credits system he is implementing is a counter productive way to see things. Here's why.... I am lead to believe that CFS sufferers are generally high achiever/high stress type personalities. I know both of these are true in my case. The thing that I have found in my own experience is that it is not really the physical act of doing whichever task we are confronted with, but the way in which we see it. We learn to fear things like 'payback' and 'using our credits'. If we start seeing household chores as things that are depleting us, then we have set ourselves up to loose. Let's see these things as good regular exercise to aid us on our road to recovery. Let's not fear payback. That fear will only make our situation worse by adding more stress to our day. We wake up the next day expecting our payback or our credits to run out. And sometimes they do! And it will be frustrating! But it isn't like we haven't been unable to get off the couch before is it? Learn from it, move on and don't fear life. Don't fear social situations or conversations that might make your head feel it's imploding. Don't fear hard work. Don't fear negative, draining friends who may need our help because they're not in a good place either. And for me, the hardest one to get your head round, but definitely the one most important- Don't fear death. It's going to happen. No matter how much you stress. And imagine if when it comes, you realise that you wasted your life worrying about what you couldn't do because of CFS. I know we can physically burn ourselves out, and we have to try to recognise the signs. But if we do, don't worry. Have a rest, settle your head and get right back on it. It can be done. Give payback no power over you. Just my 2 shillings.
I disagree with everything you said - your advice may be good for unemployed or those on disability or dependent on others. I run a small business on my own and spreading my energy evenly and knowing my limitations is crucial to my survival as an independent person. I know now that if on a good day when I'm feeling good I do 50 miles on my bike I'll pay for it with 3 days in bed not being able to fulfill my orders so next time I'd do 20 miles and spend the rest of the time in a cafe or chilling by the river. He's giving a great and valuable advice and I think you don't know what you're talking about - "have a rest and get right back on it" - lol - you have no idea about CFS which is exactly the very inability to do so.
ghostnr9 - You should possibly go back and re-read my first comment. It's not the pacing yourself advice I have objection to. To quote myself... "Toby makes a good general point with regards to pacing yourself" and "The main changes have been my diet, BEING CONSISTENT WITH THE EXERCISE I DO, and changing the way I see life." And just so you can hop off your assumption horse - I am self employed, work very long hours, claim no benefits and support a large family. I have also went through long periods of my life not being able to function or even get out of bed because of whatever it is I have (the doctor call's it CFS and it seems to fit so thats what I'm going with). My objection is the negative attitude to ones limits. My experience tells me consistent movement is hugely helpful to recovery. Particularly the type of movement one would do for something like household chores. I have found counting your limits and being afraid of payback hugely unhelpful. If you are going to reply to this comment, please could read the whole of my first comment and also make sure you have read this one. Thanks.
thankyou for ur advice!! i often run outta credits ..i thort i was doing a good thing on my power up days !! i felt like i.HAD to do alot to make up formy credit-less days. but wat u hav said makes complete sense!! im going to try this and definatly obey the golden rules .. hav a goody fellow cfs sufferers.
Thanks...really like the idea to give activities a number value..helps to keep track of where you are..because for me I need a warning before I crash...I can be folding launry perfectly fine then a few mins later...bam need to rest
I have an important place I have to go at 7pm today. It's 3pm and I guess I should start getting ready now. Ugh, the anxiety! The commitments! Never again, the end of commitments that are not necessary that can be avoided.
I can't stand that all these programs and facilities are sooooo far away. I have persistant, "vertigo, fatigue, depression and visual disturbances. This is also for me and I don't want to go on disability....
Please make people aware that this only applies to mild/moderate people. Severely ill people do not have the luxury of Good & Bad days. Just cannot relate to ANY of this. It must be nice to be at the level Toby refers to. Zero "credits" EVER!
Neil & Vickie Reeves Agreed. I think I have about 3 credits. I’m ok for about the first1-1.5 hours that I’m up. Of course, I try to get as much done as I can in that time because I know I’m going to be useless in just a little while. I just decided while typing this that I’m going to switch to disposable plates, bowls, and cutlery for a while. Not have to do as many dishes may help give me some breathing space. I guess I also need to try batch cooking (somehow) and allow time for at least one nap per day. Hopefully it won’t be forever. 🤷♀️
I thought Toby was great at explaining CFS , I suffer from FIBROMYALGIA and on many levels it's very similar to CFS symptoms, so I can also use the credits system for myself , Thank you Toby for some fantastic information, :)
Do you Toby in my case I have phoned I never talk about my My illness with friends or family anymore because they just don’t understand and I feel it’s just a waste of energy I am at the stage at the moment where I am lucky if I can get my clothes on get washed get Get food get a drink although I refuse to spend all day in bed I get up and I walk from my bedroom to my lounge and that’s my life at the moment and as you say that has to be as good as it’s going to get for awhile for me I’m hoping it will get slowly better again as I’ve been battling This illness for a long long time but I find your videos very inspiring and brings me hope thank you for all your help
⛵️Another way to think about this complicated beast is… once we realize that we are kinda like sailboats and are surrounded by motor boats, we have figure out how to be able to keep the wind 🌬 in our sails, 1st and foremost we have to set ourselves up for success by being smart about HOW we CAN WORK then figuring out how to better budget our energy resources. We know that feeling of when the sun shines, and things are moving well, we have to also follow through on our backup plans that are nutritious and gives us the room and space to keep our kite tails off the ground. If we try to sail too high, (darn sugar!) I t’s most likely that the later crash won’t be worth it and the imminent STORM inside could take us down draining our battery too low for any boost to help…if we let it. It takes that much more discipline to coddle ourselves and to maintain a regime that boosts our inner reserves of strength. We may look FINE on the outside, but we also KNOW how exhausting it is to keep that smile on our faces as the pain drains away our good humour. It’s like pulling up an anchor off the bottom of the sea! I am so grateful that Toby is sharing this info on TH-cam. It truly helps to sort and filter through so many different experiences of this and realize that IT can be managed with patience and tools. When well meaning people say, “take care of yourself,” to take that literally-we have to remind ourselves to sincerely give our undivided full intention to support our needs 1st. It’s hard not to feel guilty about always serving that loud inner toddler having a tantrum and hurting ; but reminding ourselves that maybe it just needs a rest, or a lullaby or a story or a bath or a water or a healthy snack that will help … keep us on course. 🧭. Bon oyage fellow sufferers. We must persevere.
I was diagnosed with this and Fibromyalgia. Mine started with EBV. I always try to push myself because I go through denial a lot. On good days I’m thinking “Yes, I’m fine”! Only to crash a week or a few days later and I get a bad headache and have a lot of pain. Do u recommend the Salt/C protocol? I’m doing this right now. Also my dr. put me on an ADHD med for major fatigue. Ever heard of this? Focusing on health, eating right and fitness too.
This isn't my experience of CFS. On the one hand I do have to balance rest days and periods to achieve certain things. But the credit system in the day just doesn't connect with my experience at all. I have days when I am completely wiped out no matter what I did the day before. Days when I cannot leva e the house. This seems to come and go. I remember 20 years ago being completely wiped out for months. I am again now, in between then and now I have had times when I have outputted massive amounts.
I wish Toby would specify which segment of the CFS spectrum he addresses in his videos. The kind of info here would have been helpful for me for a lot of years when I was still more functional. From his vids I've seen so far, the info is not so helpful to the 25% of us who are homebound or bedbound. Perhaps, like a good yoga teacher, modifications can be suggested for those with more limited functioning. When every activity example cited is beyond one's current capabilities, it can feel alienating. Ideally, just specify upfront the spectrum segment to which the video applies.
Thanks for the video. What country are you in? Here in the states the name "chronic fatigue syndrome" is kinda frowned upon. M.E. (myalgic encephalomyelitis) is becoming the norm. Calling this illness "Chronic fatigue" is like calling Alzheimer's "chronic forgetfulness". Its a bit demeaning. I still say/use CFS out of habit all the time, was just wondering if the name ME is gaining steam in your neck of the woods.
(Weird name? It's my brothers account xD) I got chronic fatigue/me from glandular fever almost a year ago and I just call it chronic fatigue because people can understand it straight away. I live in the uk and it doesn't seem like me is frowned upon here. Mind I only know a handful of people who've had persistent fatigue (a heck of a lot of people in my year have had glandular fever tho)
Toby, please don't shorten "Chronic Fatigue Syndrome" to "chronic fatigue" as you do in the beginning of this video. Making this shorthand name just increases the public's confusion. Chronic Fatigue Syndrome is a diagnosis such as Rheumatoid Arthritis -- chronic fatigue is just a symptom such as hurting joints. Chronic Fatigue Syndrome is NOT THE SAME THING as chronic fatigue and we who have it shouldn't confuse the issue further by using a detrimental short version of the disease's name.
ME is what my doctors call it. They just say ME/cfs to not confuse all the people who thought it was called CFS. AT least thats how it was explained to me by my doc
Hi Toby. COuld you PLEASE explain,why sóme of us,áre sooooo Very ill..totally bedridden.and háve seizures And can t eat etc.???can t talk,or communicate??
Hey Toby. You talk about surrounding yourself with positive people; I am mostly bedbound and my mother is home all day most days, and is EXTREMELY negative and stressful (especially for me) to be around. I don't have a choice and can't remove myself from her. I practise mindfulness but its still very stressful to be around her. Is there anything else I can do? Thankyou
Hi Toby, what a fantastic video. You have nailed it on the head 110%. Recently recovered from glandular fever however 5 months on and im still at home unable to work. I'm going to put this video into play today! Couldn't agree with it more. May I ask how we get in touch with you via phone or Skype? Thanks so much - it is so reassuring to know that what I'm going through (and many others by the sounds of it) is a legitimate thing. Thanks again.
I have CFS but I barely do anything. Just lying in bed and watch TH-cam videos for most of the day. I think I should do more. I started taking some sneak energy drinks and some supplements which I think is making me feel slightly better.
Meditation is the answer. Putting yourself into healing mode. 432hz youtube. The Calm app. Insight timer. I did what you’re doing for years when this is the answer ❤️
Strange thing: with all the back ground noises, the way of talking, that is quite stressful, this for me as a person suffering CFS for years, is quite painful. This seems to me as some kind of "performativ contradiction": the way something is done is not in line with what is said
How do you get anything done? I feel like I never get enough done. I don't have anyone to help me out and I have to work 40 hours a week. I have kids. I can't always get a break. I feel like I'm always behind.
I dont have 10 credits each day. Today i had no credits at all. I have cfs m.e. so this isn't suitable for everyone or everyday for some people. So what should i do.
Thank you Toby for the positive, make sense reminder about energy usage :) I caught the first 2 Golden Rules and am assuming the other 3 are relative to the individual. Is this right? If so, I believe #3 for me is avoiding hot, humid weather/conditions as I believe it is a trigger for my CFS energy depletion as well. Does this "rule" make sense from your perspective? Perhaps I'm diverging from the energy concept. But again, Thank You and God Bless!
Can I have sugar and alcohol once in a while? Every second month or so? Or will it hold me back from recovering? I feel like I’m already back on track after a week or so of indulging, I’m just uncertain.
Toby Morrison, what do you think about these videos on U tube that advise raw eating and getting of the tablets because they're toxic for you, I am so confused as to which advice to take?
K heres my question - I'm really tired a lot, and I stopped smoking 7 months ago, quit smoking weed a year ago, quit drinking beginning of january - its not that i'm in bed for days, I just wake up feeling exhausted after 9 hours sleep, not sure if its CFS though..
CFS isn't really about tiredness, you know you have it when you feel like you have been kicked all over, your muscles ache so bad, your joints feel sore and your fatigue makes you not want to even speak to people because even thats an effort. When you have over done it, you have a sore throat and flu like symptoms which can last for weeks. You may be suffering from adrenal exhaustion that's another condition which makes you feel tired.
Hi Toby! Really interested to know what you think about sleep cycles. I can sleep up to 18hrs without even waking up... I have read different opinions about sleeping set hours and FORCING yourself to wake up in the morning no matter how tired you are. For e.g 10pm-7am or do you recommend sleeping as needed and just listening to your body and wake whenever you feel fresh?
It is alot harder than just that - you need to listen your body but also stuck to a routine that you can manage! Structure and routine is the key to starting recovery no doubt! you can email me for more help at info@cfshealthcentre.com.au
Phoebe, if you can sleep for 18 hours without waking up, then you probably don't have ME/CFS. People w/ME/CFS desperately want to sleep, need to sleep, but they cannot, because their HPA axis is overstimulated...
DDumbrille sorry as a 10 year sufferer of M.E what you wrote is rubbish...it is DIFFERENT for everybody!! at the moment i am exhausted and cannot sleep...but i did sleep 9hrs last night....are you going to tell the professionals and doctors i work with they're diagnosis of myself is wrong???
noax962 I agree that ME is different for everyone, but I with all due respect, it seems like you're saying what I did. You slept 9 hours last night -- which is longer than most -- but you're exhausted now and 'cannot sleep'. That's quite different from Phoebe who is sleeping 18 hours and having to force herself to wake up "no matter how tired" one is...
+DDumbrille I have CFS, no doubt of it. I can sleep for 9 hours and wake up exhausted, I can sleep for 18 hours straight too and then there times where I can't sleep at all. The cycle of sleep is only balanced when my symptoms are balanced, the worse my symptoms, the worse my sleep cycle. its all about bad days and good days. well, to me that is.
Rest or exercise Eat healthy. ie.. no junk food. no take out. no fried food. added more healthy foods Vitamins Meditation Limited stress..... Do you have any suggestions ?
hello there love the video how would you manage a 8 hour working day plus 2 hours driving to and from site I put fencing up so digging holes heavy lifting I can get away from?
Hi Toby, i can't even do even do washing, even sms-ing is difficult for me, i don't go out, so as Alycia C says, we have it really bad, please help - is it low/no cortisol levels, are our mitochondria temporarily compromised? Mine is long-term Adrenal Fatigue with M.E. cos have had chronic headaches for 10 years. My doctor put me on Lyrica 150mg to reduce the infllammation and methylphenidate which helps calm me down cos also have adult adhd.
I think it also important for people who are less functional. I did it when I had only 10%. The thing is that we should recognize that we cannot do it all and that we need to take our time. If washing yourself ( with or without help of others) takes alot of energy then you cannot do other stuff. So that would take credits . Its a good idea but you need to adapt it to the level you are on.
Dr Teitelbaum's "S.H.I.N.E." mnemonic may also be helpful, focus on managing these factors: sleep, hormones, infections (/ inflammation), nutrition, exercise as able
Thank You. I finally found a light. The worst is doctorat made worse for years with unsuitable medicine. But your like Phoenix BIRD. Ithink IT s last call. Listing to You gives more than a prayer.
I've had this cfs 3 years & cant see an end to it career in tatters it should be renamed can't be bothered illness some times don't have energy to look left or right when driving
hi toby. how many publications have you done for peer revewed journals, what is your medical or scientific training? should you really be 'caring' for patients with a serious medical illness. why do you never emphasise the importance of a drastic increase in the scale of medical research into this terrible illness? why do you constantly refer to this illness as chronic fatigue? this is even worse than chronic fatigue syndrome which in turn is a worse name than ME. you are also promoting your 'treatment' as a major solution to CFS/ME. if the best ME specialists in the world are limited in what they can do for patients at the moment, you are either a snakeoilsalesman or the biggest medical genius of our time
Thank you for this video. I'm waiting to be investigated, my gp has send off for funding for a diagnosis. I don't know what it entails and would be so appreciative if anybody has gone thru the process to explain it. As I'm reading some of the comments I can't stop my tears. I can feel the same pain I feel in their words. Mine started just over 20 yrs ago but in that time I have had a few good periods that would last between 6mnths to up to 18mnths every 3 or 4 yrs. Wen I first got these I used to think it's gone. It won't come bk but after all this time I now accept it probably will come bk. It has and wen it does I'm barely active and I can sleep 18 to 20 a day for weeks n months. It's terrible but I was too unwell to tell the gp. By the time I'm ok and can tell the gp I'm already talking about it from a past tense. This time it's the first time I actually completely on my own so I went while it's on going because I need urgent help to survive. I don't know where to get this help as I haven't been fully diagnosed yet....
Should rather be titled HOW TO PACE for ME-CFS... basically it is severely restricting activities you might even feel ok doing; anticipating the delayed fatigue and malaise..
yelloworangered they end up like me, forced into bed for days on end, neglecting their responsibilities, losing jobs and relationships. Trust me I worked really hard at fulfilling my responsibilities for a very long time. I pushed it way too far. ME forced me to stop, now it's the slow climb back to normality.
nina renee I had the same issue with my own sister, she was working all the hours with a heart condition, and really suffering, but she wouldn’t listen to me at all. But I think that’s just the way it is, when I think about myself, people told me to slow down all the time, even my doctor told me to quit my job, I didn’t listen. I think the only person who can truly help you is yourself, and your sister probably needs time to figure it out on her own because it’s a lot to get your head round. It might mean getting worse before it gets better. It’s so good she has your support though, and she does still need it. I know it’s very frustrating to try and help someone who won’t take the advice. I worked in mental health for years before I got sick and saw so many people who wouldn’t listen or help themselves. I hope she does start to take care of herself better soon x
Sorry, you lost me when you introduced the concept of the credit system by making a stereotypical comparison to how "ladies", given a credit card, will spend it all in one day buying "silly dresses." Give me an effing break. I'm a grown woman with ME/CFS who understands science and manages money responsibly, like most people, including most women. Don't patronize us. BTW your "credit system" seems to borrow heavily from "spoon theory," which was devised by, golly gee, a woman.
If you are actually able to get out of bed at all, and suffer from that boom and bust cycle the best thing you can do is incorporate rest periods into your day. It gives you time to notice how you are feeling. It gives you a chance to notice that maybe you’re pushing yourself too hard. And it allows you time to calm yourself, de stress and move forward in a more productive way. Pacing is incredibly important. If you have 3 activities to complete in a day, that each take an hour, break them up into 10 or 20 minute chunks. Spread these chunks throughout the day so you’re not just doing one thing until complete then the next, then the next. One task may have a physical demand where another has a mental demand. Breaking them up into manageable chunks and spreading them throughout your day will help to maintain consistent energy levels. Don’t over exert yourself. It’s easy to push too much when you’re feeling okay but that only aggravates your symptoms and makes the down time worse. Pace yourself, delegate tasks for now, and maintain a consistent lower output of energy. Once you do this and have got to a point where you’re avoiding major crashes you can start to do more, gradually. Maybe add a few minute walk into your day for a week or two. Make sure it’s sustainable and you do it for at least a week before extending the duration or adding something else into your day.
Another huge mistake people make is to assume that because they’re tired they need more sleep. You’re tired because you have CFS. 8-9 hours is enough sleep. Any more and it will make you feel worse in the long run. Over sleeping is well known to make you feel more tired. If you are sleeping for more than 8-9 hours set an alarm and get up at a time that is manageable every single day. Getting up at the same time is far more important than when you go to bed. Go to bed when you’re tired but make sure you get up at the same time each day. Even if that time is mid day, it doesn’t matter, keep that time consistent. Once you can do that, you can move that alarm back by 15 minutes. Do this for at least a week. Once you know you can keep that time and you are consistently getting 8-9 hours sleep then again, you can push that time back by 15 minutes. Keep doing that gradually until you are able to get up at a time that suits you. When you wake up, get as much sunlight as you can. This will help to flush out the chemicals that keep you feeling tired. Inside homes is typically significantly darker than being under tree cover on a cloudy day let alone put in the sun on a bright day. It’s dark in your room! Your pupil dilation might trick you into believing your bedroom is bright but it’s not. Get outside for 2 minutes after waking and you’ll feel significantly better for it.
Eating good food, maintaining a balanced diet and eating at regular intervals will help too. Not eating enough makes me feel awful! It can often be a trigger for crashes even if you haven’t over exerted yourself. Eat properly!
Those are just a few tips that I have.
I’ve had CFS for about 10 years. It went misdiagnosed for most of that time but now I’m going through a fantastic program that is so helpful. Only problem is I am chronically de conditioned and have severe muscle atrophy. I’m really struggling but that’s to be expected. You’ve just got to trust in the process and take each day as it comes. Eat well, don’t over sleep, don’t over exert yourself and build up gradually. Taking regular breaks will give you a chance to pick up on signs that you’re pushing too much. Good luck!
Thank you for your helpful comments. God bless you😊❤
I wish to God I COULD sleep.
I love quiet times when I’m left alone and nothing is asked of me. To be able to sleep and not feel guilty at what ever time of the day is great. Emotionally this can really depress you with your own thoughts.
I think it's very important to mention the fact that these rules apply more for the mild to moderately affected & not for those whose illness is severe. 25% of cfs (me) sufferers have a severe case & are bedridden, wheelchair bound, & completely dependant on someone else for almost all of their needs. The medical community is still in the dark on this & they often give advice that could further harm (& in some cases kill) the patient so it's imperative that correct & thorough information be available. Great info for those who aren't at the end of the spectrum though.
I don't know what percentage I would be, but at my worst I had days were I stayed in bed for 3 days and found it hard to walk up the stairs. 'Graded exercise' 'moderate exercise' are probably the WORST things you can do when you have CFS that bad. I got myself out of that situation through a very restrictive diet and by seeing a chiropractor who said I was the worst case in terms of muscle knots/tension she had seen in her career. When you don't feel 'right' and you feel like your muscles are not working correctly, thats a fucking sign you shouldn't be doing exercise. Listen to your body, it's more intelligent than any 'doctor' out there. I had began having symptoms in 2005 and by 2007 were so bad I had to leave college and was inactive until last year. It was soul destroying trying to find answers when there is no help. I can gladly say that those days are behind me now and i promised that If i ever got myself well I would do youtube videos to help people avoid absolute bullshit advice/products/routines like I did. If you're interested check out my channel and ask me absolutely anything you want.
Woohoo How about spending 7 years of your life bedridden .... except for 2-3 doctor's appointment each year. That was my life until a year ago. I'm still partially bedridden (about 80% of the day spent in bed).
The main reason I ended up so debilitated was that my doctor attempted to treat my ME with exercise, therapy, & lot of yelling at me because "I must not be doing enough or I'd be better by now".
The wrong advice, given to someone with ME, can be far worse than no advice at all. Most people that end up bedridden for decades were given the wrong advice from their doctor &/or it took years for them to get a diagnosis.
The worst advice given to people with ME (CFS in the US) is that this illness isn't fatal.... It most definitely can be fatal. And because no research has been done on the most severe patients, until very very recently, we still don't know how many people have/will die from ME. People making videos, such as this one, need to be very very careful about giving advice unless they understand just how serious this illness can be.
Health Recovery Well said.
Woohoo
I couldn't function in normal life for 8 years and barely left my house. but congrats you're a special snowflake!
Alycia there are many things i did that i talk about on my channel - I had to change absolutely everything in my life. good luck!
Hi Toby, i can't even do even do washing, even sms-ing is difficult for me, i don't go out, so as Alycia C says, we have it really bad, please help - is it low/no cortisol levels, are our mitochondria temporarily compromised? Mine is long-term Adrenal Fatigue with M.E. cos have had chronic headaches for 10 years. My doctor put me on Lyrica 150mg to reduce the infllammation and methylphenidate which helps calm me down cos also have adult adhd.
I went from 90 MPH to 5 ......I have ZERO ENERGY & MOTIVATION. I used to meet with my friends almost everyday, that all has ended. It's an event to just check my mail or drive to the store. I'm in constant neck & back pain. I have literally lost all interest in life. I am not suicidel l I just want to be left alone and stay in my bed.....I can easily sleep for 15 hours a day......and still be tired 😴
I know the lack of motivation and isolation. I wish to God I COULD sleep!
oh.my.god. if i could function at the level discussed here, i'd be one happy camper. i can barely even keep track of the rapid-fire delivery of details in the vid. (tho toby does seem to care and have experience with "cfs light".) i've been dealing with this since late 1992, but not formally diagnosed as cfs until about a year ago. "get up, get dressed, make breakfast, do the washing, and think about what else you're going to do that day"??? on a typical basis?? are you *kidding* me?? this advice would probably have been helpful 5, 10, 15 years ago when i was still functional, somehow able to hold down a job, keep up the house to a reasonable level, socialize, etc (and then be entirely passed out on weekends and holidays), but it surely doesn't apply now, or only in a minimal way.
i totally agree with the commenter who suggested these advices should have ratings for the level of cfs they're intended for.
I'm so frustrated here...... Has ANYONE EVER HAD CONTACT FROM ANYONE after they post here or anywhere in you tube?. Some post are years old.... How do you know if anyone has read what you wrote..dhendriks33@gmail.com
Ideally, I need to move back to my parents to work less and have more rest. Unfortunately, they just think I'm lazy and depressed. I think when I completely crash, they'll finally understand what I'm going through.
Thank you. I tend to rush through my housework and shopping, so I can get it done before crashing. I'm going to try this, it makes sense.
Did it work for you? When I took a break, my energy stopped. I started feeling tired. So I believe, if I just finish whatever I’m doing for that day is how I can finish things. Yes, this is not fun to deal with.
Just to say for me it’s not just physical, as you say, stress and mental tasks can deplete my energy levels............ one stress that really takes it out of me are well meaning friends who don’t believe or understand what I’m going through...............
Agree with what a lot of people have written. I wish I’d heard this decades ago...now I’m way past the stage he’s talking about. I’m have a good day very rarely. Most days are very limited. Asleep until midday (or longer), after being awake most of the night. On a good day I might be able to get up the stairs to have a shower or bath...possibly once a fortnight. Most of my time is spent in bed or lying on settee in the evening. My husband abandoned me, divorced me because of the ME and remarried straight away. My youngest son is abroad traveling and my daughter won’t see me, communicate in any way. I wasn’t invited to her wedding. I don’t get to see my grandson. My middle child; son (with ASD) is the only family I have and he’s wonderful but limited in what he’s able to cope with. Had I been diagnosed with this years ago I might have some sort of life now..but I’ve just got an existence.
We need earlier diagnosis, support and understanding of this horrendous condition
Thanks for all your comments guys - this video has some great tips on how to implement energy saving strategies LONG TERM!
***** I would suggest enrolling in my online program as I dont know any helpful centres there - www.cfshealthrecoveryprogram.com
Hi Toby. My name is Anna. I'm 14 and I was healthy to 100% till I was 11. Then I got a virus and after that I never got better. I got diagnosed with CFS in the beginning of 2016. I found know a really good way to get healthy. I feel way better since I take those extra vitamins and stuff. I go out every day for a walk and just for fresh air and my body, my soul and myself feels so much better. I can't listen to the people who say I can't everyone can I could and I couldn't stand up for months. You just have to belive in yourself and stay positive no matter how bad and how sick you are. That's all I can say.
Hi Toby do you have / had CFS yourself?
yeah he mentions it at 8:10
Chur bro!
Didn't even bother to get pen and paper. Too exhausted to even do that. What I'm doing this time in my life is organizing and getting rid of clutter. Maybe this will help me if I have less things and easier to clean. I do like cleanliness. Makes me happy when my surroundings look nice!
Thanks Tony, for training me in this condition. This is causing a divorce, my family and friends. I need to find a good specialist..Right now everyone is classifying me as a Pysche patient. I refuse to take medications
+Lori Favela YOU take the meds than seek CFS cure.Maybe you have got bipolar too.
Spot on, what a wonderful man. You have made me feel a bit more optimistic.
I wish you had a centre in the UK. Thanks for the advice. I'm guilty for trying to push myself on good days!
Wow! I need to listen to this every single day. 12 years on, and still think I have beaten CFS, then it comes back to teach me a lesson!
Guilty of not picking up the warning signs! Probiotics and kefir and kombucha seem to help.
Thank you for you lovely videos.
One day: chopping up vegetables for soup pot, day two: cook soup. Feeding myself properly (low carb) throughout the day, also draining. Socializing is a thing of the past, even minimal time on social media... too many questions, don't feel like chatting. It's a question for me of understanding that I have extreme limits and cannot act like everyone else. If they're not good with that, well, then..... stressing around others who won't listen - nope. This is a condition of learning to listen to self and to stop giving priority to people who may not necessarily care too much about you.
Thank you Toby; Thank God for your work.....millions missing and invisible know you, your work; they just too ill to speak/read....but they hear you. Please don't stop helping us all.
Every activity can one day give me energy and another day deplete me of energy. Resting can deplete me of energy as well. There is a lot of ignorance about this condition.
I'm so thankful to have found this!
This is brilliant. Love this channel. The only thing is add is that I think it's good to think in terms of keeping one credit back for the immune system to use
Totally just fell in love with you when I found this. Thanks so much for sharing this Toby.
Love these ideas….. in a flare as my handicapped son is in intensive care…..
I'm at a point where I can't do any of the credit expenses you're referring to. I can barely handle tasks, shopping, I don't have enough energy for friends or any events. I mostly just lie down or sleep. I hope this gets better. I guess I need to take control and gradually get myself functioning at least a little. The most I can do is walk my dog around the block only because I have to.
Woohoo Yes, I am fighting my 3rd bout of Epstein-Barr virus, and this time, it's lasted over a year. I also have an active CMV infection, as well as HHV-1. It all points to an immune disorder, but my insurance is so bad, it's taken 5 months with a new doctor and I STILL haven't seen a specialist. My old doctor told me I was fine even though the blood tests showed the viral infections and very high inflammation levels. This is a very difficult illness to try to fight when most of the medical establishment either thinks you're lying, or couldn't care less.
Hi Toby this was one of the best videos that I have seen by you I saw it a few months back and I sent it to my siblings and my adult children and I think my older brother was the only one that said "good " except , I think one of my daughters said I shouldn't watch these programs on illnesses because it's not good for me to do that! They don't really understand and haven't for years! I've been bothered with chronic fatigue bad episodes since about 1988, but was diagnosed with thyroid problems and unknown fatigue problems since around 1993. Then a few years later with fibromyalgia and CFS. My now ex-husband couldn't deal with my issues and just tolerated me and eventually asked for a divorce so I went through a bad divorce!! Anyway I'm trying to change my inner thinking and my understanding of my religion and changing my self talk some, and it's helping some. Thank you for this video I think it is very helpful in explaining Cfs !!
Lol.they think if we ignore it it'll go away!
No matter what I have done so far: Fitness since 2009, Yoga, Qi-Gong, Breathing Exercises, Mindfulness, Chair Yoga etc...I never know how I wake up the next day with stiffness, fatigue, pain.
Hang in there. Keep doing all the right things as much as you can. Things will get better. Trust me.
I am hanging in there. @@teddybearroosevelt1847
Weird that you popped up in my feed, obviously google took note while o was telling my neighbors I had overdone things. Just figured all this out today so it’s good to hear your intonation
Just your first 2 minutes of this presentation you hit important issues!
What if you don't have 10 credits anymore? maybe only two?
Such an important message for me to remember.
First comment I've ever made on a youtube vid. I felt so strongly opposed to some of the advice given here, I set up an account in the hope my experience can help someone.
I have had CFS for many years but was diagnosed around 9 months ago. I'm very much on the road to full recovery and I intend to get there. I still have bad days but they are far less often and far less severe. I do not avoid doing anything. At all. Ever.
The main changes have been my diet, being consistent with the exercise I do, and changing the way I see life.
Although Toby makes a good general point with regards to pacing yourself, I think the credits system he is implementing is a counter productive way to see things. Here's why....
I am lead to believe that CFS sufferers are generally high achiever/high stress type personalities. I know both of these are true in my case. The thing that I have found in my own experience is that it is not really the physical act of doing whichever task we are confronted with, but the way in which we see it. We learn to fear things like 'payback' and 'using our credits'. If we start seeing household chores as things that are depleting us, then we have set ourselves up to loose. Let's see these things as good regular exercise to aid us on our road to recovery. Let's not fear payback. That fear will only make our situation worse by adding more stress to our day. We wake up the next day expecting our payback or our credits to run out. And sometimes they do! And it will be frustrating! But it isn't like we haven't been unable to get off the couch before is it? Learn from it, move on and don't fear life. Don't fear social situations or conversations that might make your head feel it's imploding. Don't fear hard work. Don't fear negative, draining friends who may need our help because they're not in a good place either. And for me, the hardest one to get your head round, but definitely the one most important- Don't fear death. It's going to happen. No matter how much you stress. And imagine if when it comes, you realise that you wasted your life worrying about what you couldn't do because of CFS. I know we can physically burn ourselves out, and we have to try to recognise the signs. But if we do, don't worry. Have a rest, settle your head and get right back on it. It can be done. Give payback no power over you.
Just my 2 shillings.
I disagree with everything you said - your advice may be good for unemployed or those on disability or dependent on others. I run a small business on my own and spreading my energy evenly and knowing my limitations is crucial to my survival as an independent person. I know now that if on a good day when I'm feeling good I do 50 miles on my bike I'll pay for it with 3 days in bed not being able to fulfill my orders so next time I'd do 20 miles and spend the rest of the time in a cafe or chilling by the river. He's giving a great and valuable advice and I think you don't know what you're talking about - "have a rest and get right back on it" - lol - you have no idea about CFS which is exactly the very inability to do so.
ghostnr9 - You should possibly go back and re-read my first comment. It's not the pacing yourself advice I have objection to.
To quote myself... "Toby makes a good general point with regards to pacing yourself" and "The main changes have been my diet, BEING CONSISTENT WITH THE EXERCISE I DO, and changing the way I see life."
And just so you can hop off your assumption horse - I am self employed, work very long hours, claim no benefits and support a large family. I have also went through long periods of my life not being able to function or even get out of bed because of whatever it is I have (the doctor call's it CFS and it seems to fit so thats what I'm going with).
My objection is the negative attitude to ones limits. My experience tells me consistent movement is hugely helpful to recovery. Particularly the type of movement one would do for something like household chores. I have found counting your limits and being afraid of payback hugely unhelpful.
If you are going to reply to this comment, please could read the whole of my first comment and also make sure you have read this one. Thanks.
thankyou for ur advice!! i often run outta credits
..i thort i was doing a good thing on my power up days !! i felt like i.HAD to do alot to make up formy credit-less days. but wat u hav said makes complete sense!! im going to try this and definatly obey the golden rules .. hav a goody fellow cfs sufferers.
Thanks...really like the idea to give activities a number value..helps to keep track of where you are..because for me I need a warning before I crash...I can be folding launry perfectly fine then a few mins later...bam need to rest
I wish it was that easy. In my case getting out of bed just to drive to work is about 8 credits.
I needed these reminders today !
I have an important place I have to go at 7pm today. It's 3pm and I guess I should start getting ready now. Ugh, the anxiety! The commitments! Never again, the end of commitments that are not necessary that can be avoided.
I can't stand that all these programs and facilities are sooooo far away.
I have persistant, "vertigo, fatigue, depression and visual disturbances.
This is also for me and I don't want to go on disability....
Thank you, so hard but so important ❤
Thank you for giving me this tool!
Great tip!
Just completing one of those tasks you say are 2 credits would cause a serious crash for me that could last weeks! I’m starting near rock bottom.
Please make people aware that this only applies to mild/moderate people. Severely ill people do not have the luxury of Good & Bad days. Just cannot relate to ANY of this. It must be nice to be at the level Toby refers to. Zero "credits" EVER!
Neil & Vickie Reeves Agreed. I think I have about 3 credits. I’m ok for about the first1-1.5 hours that I’m up. Of course, I try to get as much done as I can in that time because I know I’m going to be useless in just a little while. I just decided while typing this that I’m going to switch to disposable plates, bowls, and cutlery for a while. Not have to do as many dishes may help give me some breathing space. I guess I also need to try batch cooking (somehow) and allow time for at least one nap per day. Hopefully it won’t be forever. 🤷♀️
I thought Toby was great at explaining CFS , I suffer from FIBROMYALGIA and on many levels it's very similar to CFS symptoms, so I can also use the credits system for myself , Thank you Toby for some fantastic information, :)
Do you Toby in my case I have phoned I never talk about my My illness with friends or family anymore because they just don’t understand and I feel it’s just a waste of energy I am at the stage at the moment where I am lucky if I can get my clothes on get washed get Get food get a drink although I refuse to spend all day in bed I get up and I walk from my bedroom to my lounge and that’s my life at the moment and as you say that has to be as good as it’s going to get for awhile for me I’m hoping it will get slowly better again as I’ve been battling This illness for a long long time but I find your videos very inspiring and brings me hope thank you for all your help
⛵️Another way to think about this complicated beast is… once we realize that we are kinda like sailboats and are surrounded by motor boats, we have figure out how to be able to keep the wind 🌬 in our sails, 1st and foremost we have to set ourselves up for success by being smart about HOW we CAN WORK then figuring out how to better budget our energy resources. We know that feeling of when the sun shines, and things are moving well, we have to also follow through on our backup plans that are nutritious and gives us the room and space to keep our kite tails off the ground. If we try to sail too high, (darn sugar!) I t’s most likely that the later crash won’t be worth it and the imminent STORM inside could take us down draining our battery too low for any boost to help…if we let it. It takes that much more discipline to coddle ourselves and to maintain a regime that boosts our inner reserves of strength. We may look FINE on the outside, but we also KNOW how exhausting it is to keep that smile on our faces as the pain drains away our good humour. It’s like pulling up an anchor off the bottom of the sea! I am so grateful that Toby is sharing this info on TH-cam. It truly helps to sort and filter through so many different experiences of this and realize that IT can be managed with patience and tools. When well meaning people say, “take care of yourself,” to take that literally-we have to remind ourselves to sincerely give our undivided full intention to support our needs 1st. It’s hard not to feel guilty about always serving that loud inner toddler having a tantrum and hurting ; but reminding ourselves that maybe it just needs a rest, or a lullaby or a story or a bath or a water or a healthy snack that will help … keep us on course. 🧭. Bon oyage fellow sufferers. We must persevere.
I was diagnosed with this and Fibromyalgia. Mine started with EBV. I always try to push myself because I go through denial a lot. On good days I’m thinking “Yes, I’m fine”! Only to crash a week or a few days later and I get a bad headache and have a lot of pain. Do u recommend the Salt/C protocol? I’m doing this right now. Also my dr. put me on an ADHD med for major fatigue. Ever heard of this? Focusing on health, eating right and fitness too.
Hey, its been 3 years since you wrote this, did you recover and if you did what helped you out the most
This isn't my experience of CFS. On the one hand I do have to balance rest days and periods to achieve certain things. But the credit system in the day just doesn't connect with my experience at all. I have days when I am completely wiped out no matter what I did the day before. Days when I cannot leva e the house. This seems to come and go. I remember 20 years ago being completely wiped out for months. I am again now, in between then and now I have had times when I have outputted massive amounts.
I wish Toby would specify which segment of the CFS spectrum he addresses in his videos. The kind of info here would have been helpful for me for a lot of years when I was still more functional. From his vids I've seen so far, the info is not so helpful to the 25% of us who are homebound or bedbound. Perhaps, like a good yoga teacher, modifications can be suggested for those with more limited functioning. When every activity example cited is beyond one's current capabilities, it can feel alienating. Ideally, just specify upfront the spectrum segment to which the video applies.
Thanks for the video. What country are you in? Here in the states the name "chronic fatigue syndrome" is kinda frowned upon. M.E. (myalgic encephalomyelitis) is becoming the norm. Calling this illness "Chronic fatigue" is like calling Alzheimer's "chronic forgetfulness". Its a bit demeaning. I still say/use CFS out of habit all the time, was just wondering if the name ME is gaining steam in your neck of the woods.
(Weird name? It's my brothers account xD) I got chronic fatigue/me from glandular fever almost a year ago and I just call it chronic fatigue because people can understand it straight away. I live in the uk and it doesn't seem like me is frowned upon here. Mind I only know a handful of people who've had persistent fatigue (a heck of a lot of people in my year have had glandular fever tho)
another great vid Toby!! Your vids are helping me tonnes
Toby, please don't shorten "Chronic Fatigue Syndrome" to "chronic fatigue" as you do in the beginning of this video. Making this shorthand name just increases the public's confusion. Chronic Fatigue Syndrome is a diagnosis such as Rheumatoid Arthritis -- chronic fatigue is just a symptom such as hurting joints. Chronic Fatigue Syndrome is NOT THE SAME THING as chronic fatigue and we who have it shouldn't confuse the issue further by using a detrimental short version of the disease's name.
+Brenda Reed.... Amen to that!
ME is what my doctors call it. They just say ME/cfs to not confuse all the people who thought it was called CFS. AT least thats how it was explained to me by my doc
Excellent advice !
We usually use the term spoons...instead of credits :p
Hi Toby. COuld you PLEASE explain,why sóme of us,áre sooooo Very ill..totally bedridden.and háve seizures And can t eat etc.???can t talk,or communicate??
Hey Toby. You talk about surrounding yourself with positive people; I am mostly bedbound and my mother is home all day most days, and is EXTREMELY negative and stressful (especially for me) to be around. I don't have a choice and can't remove myself from her. I practise mindfulness but its still very stressful to be around her. Is there anything else I can do?
Thankyou
Thanku Toby...Thanku Thanku
Hi Toby, what a fantastic video. You have nailed it on the head 110%. Recently recovered from glandular fever however 5 months on and im still at home unable to work. I'm going to put this video into play today! Couldn't agree with it more. May I ask how we get in touch with you via phone or Skype? Thanks so much - it is so reassuring to know that what I'm going through (and many others by the sounds of it) is a legitimate thing. Thanks again.
Rings true Toby
Thanks
Thank you!
I have CFS but I barely do anything. Just lying in bed and watch TH-cam videos for most of the day. I think I should do more. I started taking some sneak energy drinks and some supplements which I think is making me feel slightly better.
Meditation is the answer. Putting yourself into healing mode. 432hz youtube. The Calm app. Insight timer. I did what you’re doing for years when this is the answer ❤️
@@hannahjayne4097 Thanks 🙂
I wish you had a center in Holland...✨💕
Strange thing: with all the back ground noises, the way of talking, that is quite stressful, this for me as a person suffering CFS for years, is quite painful. This seems to me as some kind of "performativ contradiction": the way something is done is not in line with what is said
How do you get anything done? I feel like I never get enough done. I don't have anyone to help me out and I have to work 40 hours a week. I have kids. I can't always get a break. I feel like I'm always behind.
It's being 7 months since going covid now I'm having bad fatigue is this cfs?
I dont have 10 credits each day. Today i had no credits at all. I have cfs m.e. so this isn't suitable for everyone or everyday for some people. So what should i do.
Thank you Toby for the positive, make sense reminder about energy usage :) I caught the first 2 Golden Rules and am assuming the other 3 are relative to the individual. Is this right? If so, I believe #3 for me is avoiding hot, humid weather/conditions as I believe it is a trigger for my CFS energy depletion as well. Does this "rule" make sense from your perspective? Perhaps I'm diverging from the energy concept. But again, Thank You and God Bless!
Can I have sugar and alcohol once in a while? Every second month or so? Or will it hold me back from recovering? I feel like I’m already back on track after a week or so of indulging, I’m just uncertain.
Toby Morrison, what do you think about these videos on U tube that advise raw eating and getting of the tablets because they're toxic for you, I am so confused as to which advice to take?
I’m going to try this ❤ 13:00
How many points would a day of work be? Or half a day as I work 4 hour shifts currently?
K heres my question - I'm really tired a lot, and I stopped smoking 7 months ago, quit smoking weed a year ago, quit drinking beginning of january - its not that i'm in bed for days, I just wake up feeling exhausted after 9 hours sleep, not sure if its CFS though..
CFS isn't really about tiredness, you know you have it when you feel like you have been kicked all over, your muscles ache so bad, your joints feel sore and your fatigue makes you not want to even speak to people because even thats an effort. When you have over done it, you have a sore throat and flu like symptoms which can last for weeks. You may be suffering from adrenal exhaustion that's another condition which makes you feel tired.
nice video thanks
Hi Toby! Really interested to know what you think about sleep cycles. I can sleep up to 18hrs without even waking up... I have read different opinions about sleeping set hours and FORCING yourself to wake up in the morning no matter how tired you are. For e.g 10pm-7am or do you recommend sleeping as needed and just listening to your body and wake whenever you feel fresh?
It is alot harder than just that - you need to listen your body but also stuck to a routine that you can manage! Structure and routine is the key to starting recovery no doubt! you can email me for more help at info@cfshealthcentre.com.au
Phoebe, if you can sleep for 18 hours without waking up, then you probably don't have ME/CFS. People w/ME/CFS desperately want to sleep, need to sleep, but they cannot, because their HPA axis is overstimulated...
DDumbrille sorry as a 10 year sufferer of M.E what you wrote is rubbish...it is DIFFERENT for everybody!! at the moment i am exhausted and cannot sleep...but i did sleep 9hrs last night....are you going to tell the professionals and doctors i work with they're diagnosis of myself is wrong???
noax962 I agree that ME is different for everyone, but I with all due respect, it seems like you're saying what I did. You slept 9 hours last night -- which is longer than most -- but you're exhausted now and 'cannot sleep'. That's quite different from Phoebe who is sleeping 18 hours and having to force herself to wake up "no matter how tired" one is...
+DDumbrille I have CFS, no doubt of it. I can sleep for 9 hours and wake up exhausted, I can sleep for 18 hours straight too and then there times where I can't sleep at all. The cycle of sleep is only balanced when my symptoms are balanced, the worse my symptoms, the worse my sleep cycle. its all about bad days and good days. well, to me that is.
What if someone rarely has a good day?.
Seriously -- Nothing works.
what is "nothing" ?
Rest or exercise
Eat healthy. ie.. no junk food. no take out. no fried food. added more healthy foods
Vitamins
Meditation
Limited stress.....
Do you have any suggestions ?
WOW! Noooooo do not do that !! Im sorry I just seen this today... please respond and let me know you are ok
I'm.okay, a little better
have you tried probiotics? LDN? B12 shots?
I sadly have to overpush myself lmot everyday, because of scool:/
hello there love the video how would you manage a 8 hour working day plus 2 hours driving to and from site
I put fencing up so digging holes heavy lifting I can get away from?
Change my life !
Hi Toby, i can't even do even do washing, even sms-ing is difficult for me, i don't go out, so as Alycia C says, we have it really bad, please help - is it low/no cortisol levels, are our mitochondria temporarily compromised? Mine is long-term Adrenal Fatigue with M.E. cos have had chronic headaches for 10 years. My doctor put me on Lyrica 150mg to reduce the infllammation and methylphenidate which helps calm me down cos also have adult adhd.
yes mild to moderate
Are the CFS clinics in Chicago or do you know anyone nearby in the U.S.A.
I am very impressed in the is in that BFS I don't know it is BS4 please like me
I am very nice p s b s s v please
I am very nice p s b s s v please
I think it also important for people who are less functional. I did it when I had only 10%. The thing is that we should recognize that we cannot do it all and that we need to take our time. If washing yourself ( with or without help of others) takes alot of energy then you cannot do other stuff. So that would take credits . Its a good idea but you need to adapt it to the level you are on.
Dr Teitelbaum's "S.H.I.N.E." mnemonic may also be helpful, focus on managing these factors: sleep, hormones, infections (/ inflammation), nutrition, exercise as able
Thank You. I finally found a light. The worst is doctorat made worse for years with unsuitable medicine. But your like Phoenix BIRD. Ithink IT s last call. Listing to You gives more than a prayer.
SO TRUE
Me, too
I've had this cfs 3 years & cant see an end to it career in tatters it should be renamed can't be bothered illness some times don't have energy to look left or right when driving
hi toby. how many publications have you done for peer revewed journals,
what is your medical or scientific training? should you really be 'caring' for patients with a serious medical illness. why do you never emphasise the importance of a drastic increase in the scale of medical research into this terrible illness? why do you constantly refer to this illness as chronic fatigue? this is even worse than chronic fatigue syndrome which in turn is a worse name than ME. you are also promoting your 'treatment' as a major solution to CFS/ME. if the best ME specialists in the world are limited in what they can do for patients at the moment, you are either a snakeoilsalesman or the biggest medical genius of our time
Thank you for this video. I'm waiting to be investigated, my gp has send off for funding for a diagnosis. I don't know what it entails and would be so appreciative if anybody has gone thru the process to explain it. As I'm reading some of the comments I can't stop my tears. I can feel the same pain I feel in their words. Mine started just over 20 yrs ago but in that time I have had a few good periods that would last between 6mnths to up to 18mnths every 3 or 4 yrs. Wen I first got these I used to think it's gone. It won't come bk but after all this time I now accept it probably will come bk. It has and wen it does I'm barely active and I can sleep 18 to 20 a day for weeks n months. It's terrible but I was too unwell to tell the gp. By the time I'm ok and can tell the gp I'm already talking about it from a past tense. This time it's the first time I actually completely on my own so I went while it's on going because I need urgent help to survive. I don't know where to get this help as I haven't been fully diagnosed yet....
Ppl do military fitness like fight sports (bjj, judo, muy thai.... the only thing that helps.
cant*
Should rather be titled HOW TO PACE for ME-CFS... basically it is severely restricting activities you might even feel ok doing; anticipating the delayed fatigue and malaise..
I fell asleep whilst waiting for him to get to the point.....lost me at women and shopping stereotype from Aussie male s p.
Damn!! Alot of touchy people here. 😂 Trolls are experts! 😂
OH, SHUT UP. What about those of us who have too many responsibiliteis to play the "don't do too much" game?
yelloworangered they end up like me, forced into bed for days on end, neglecting their responsibilities, losing jobs and relationships. Trust me I worked really hard at fulfilling my responsibilities for a very long time. I pushed it way too far. ME forced me to stop, now it's the slow climb back to normality.
I UNDERSTAND. I am there myself. WHY don't these "worked for me's" HELP US BECOME THE FACE OF CFS?
@@LydiaMorsman That's what I'm trying to tell my sister . she is pushing it and getting worse. I told her to make the changes now or her body will!
nina renee I had the same issue with my own sister, she was working all the hours with a heart condition, and really suffering, but she wouldn’t listen to me at all. But I think that’s just the way it is, when I think about myself, people told me to slow down all the time, even my doctor told me to quit my job, I didn’t listen. I think the only person who can truly help you is yourself, and your sister probably needs time to figure it out on her own because it’s a lot to get your head round. It might mean getting worse before it gets better.
It’s so good she has your support though, and she does still need it. I know it’s very frustrating to try and help someone who won’t take the advice. I worked in mental health for years before I got sick and saw so many people who wouldn’t listen or help themselves. I hope she does start to take care of herself better soon x
Nuts.....eat Nuts.....cured me in a day after 15 days on bed. God Bless.
I'm thinkin' you're nuts! Lol!
I think they do help!
low Mg causes CFS
Well you put every buzzword you could in the description. But said little that helped. CLICK BAIT!
Sorry, you lost me when you introduced the concept of the credit system by making a stereotypical comparison to how "ladies", given a credit card, will spend it all in one day buying "silly dresses." Give me an effing break. I'm a grown woman with ME/CFS who understands science and manages money responsibly, like most people, including most women. Don't patronize us. BTW your "credit system" seems to borrow heavily from "spoon theory," which was devised by, golly gee, a woman.
Michele Sherstan it's a common mistake men make. Don't take it to heart.
@@sarahgibson3413 SOME men
You're much hotter with your hair short
Visit www.thebodymindprogramme.com for a treatment that really works.