Vloggery - Great video, I also have had CFS for many years. I believe that it is something that the government is doing to us. Many people that have this illness, also consider themselves as being "targeted individuals." They are being harassed by government/intelligence agencies for being political dissidents, whistleblowers, or other unknown reasons.
hi everyone just puttin this message because iv had cronic fertigue for 5 years and it as wreaked my life.but was reading up on things that can help it and saw on a site about pink himalayin salt for food so i tried it 6 days ago.with in those 6 days iv iproved 100%.any person with cronic fatigue me try this its less than 3 pound an as worked for me after 5 years of trying everythink.av a try i saw it on a site last week when i was looking at cronic fatigue an me.just try i was doing exercise eating better trying everythink it didnt work then i tried this.whith in 6 days i can go the gym a feel great.i hope this works 4 u cos cronic fatigue me as been destroying my life for years good luck.
I'm a young carer (If 17 is still considered 'young' at this point) for my Mum who has CFS and ME (Basically the same thing). I love these videos and being able to talk to others in the comments who understand the condition and have loved ones who live with it. It really bugs me when people just call it laziness, sometimes I have to sit on the toilet next to the shower when my mum washes just in case she faints from exhaustion (which has happened in the past) and that shit isn't just simply being lazy. As well as thanking you for making videos about CFS I also want to thank you, Emma, for all of your content and work put into that content because for me - juggling college and cooking and cleaning and laundry and shopping and general housekeeping for my 3 siblings alongside my dad - your videos really help me chill out and relax after a hard day. Been watching you for years, and even if the word is pretentious and annoying now, you are really RAD
Thank you for looking after your mum and family (sounds weird but I hope you get what I mean!) As someone with CFS, I always think people who understand and want to help are amazing!
oh man the amount of times i've had to sit down in the shower because i've been worried about passing out and hitting my head... living alone can be scary! also if sit in the bath too long and its too hot i have to get out and lay on the bathroom floor immediately, i've genuinely passed out before lol LIFE IS FUN
Amber Cumberland holy shit the shower thing is a thing?? ive had trouble with that most my teen years and just sit down as much as possible now, i thought that was just because im a bit overweight and in horrible shape. the more i hear about this the more i think it sounds like me
Meg Jones You should definitely see your doctor about it, it could be CFS because it can be triggered by all sorts of things, from a virus or pregnancy or even by being a little bit overweight. Being overweight shouldn't make you feel faint in the shower or bath, defo go to the doctor and get it checked out ❤
Vloggery My mum gets paranoid but I'm the one who insists on sitting outside to listen out for her! It gives me really bad anxiety sometimes, to the point I will sleep on the sofa at night so I'm near her to make sure shes okay during the night (going to toilet, using stairs etc) I couldn't stand the thought of her being on her own like you are! It must get stressful handling CFS living alone, I really feel for you ❤
Hi Emma, as someone who studies medicine, I thought you might be interested to know that amoxicillin often causes a nasty rash in patients with glandular fever- it's a recognised thing and not actually an allergic reaction. For that very reason we're taught to not prescribe amoxicillin if glandular fever is suspected as it can cause the rash- you shouldn't have been prescribed it!. You can Google it to see lots more information about it! I just thought it would be helpful to know as penicillins can be life-saving drugs at times and I wouldn't want you to not be given them in fear of an allergic reaction (if the drs didn't realise you never actually had an allergic reaction- just a bad cross reaction with the glandular fever!). I hope this is helpful and good luck with everything :)
Suing the NHS, though... just feels wrong :/ Plus, she'd have to get verification from Doctors in court that it was the bad reaction that caused the CFS. If you could sue for that, you'd get tons, because it's a life affecting illness that potentially took Emma out of a normal working life. Either way, it's like the CFS came from the Glandular Fever, so she wouldn't be able to claim for malpractice... ANYWAY. I realise what you were saying was a joke :P
I've had chronic fatigue since I got glandular fever when I was 4/5 years old(?) and I'm now 16. It's honestly been a living hell, when I first got diagnosed (which took bloody forever to get the diagnosis) I was the worst it had been. Now, I have basically no social life outside of school because I'm too anxious incase I get over tired. People don't realise how horrible it is living with CFS, I've lost many friends due to the fact they do not understand it, but it's so simple to understand (for me). Its not that hard to get your head around the fact someone will get sooo very tired doing the bare minimum sometimes. I have also been developing POTS symptoms over the years and it makes CFS 100X worse. It's so nice for a big youtuber to be going through something like us viewers that have CFS, and to not feel so alone. ❤️
Hi Emma, around 4 years ago I was diagnosed with cfs/me. At the ago of 13 I pretty much thought my life was over. The diagnosis was based on a depression episode I went through at an early age. After this I spiralled downhill, unable to go to school, unable to see my friends, unable to do most things everyone else could do, this took a toll on not only my mental health but my aspirations and to be honest I gave up hope of ever getting better after failed treatments. However, late last year I decided to do the lightning process, after my mum suggested it I thought I had nothing more to lose so I went for it, as of date, I haven't suffered illness and I'm completely cured of ME, if you ever wanted to get in touch I think it would be amazing if you could do the process, also raising awareness as your Chanel is so large would inform lots of other unaware viewers suffering with the illness. I honestly think the lightning process completely changed my life, thanks for reading 😊 x
Holy shit I am actually so glad that someone is talking about how frustrating the whole thing is. Diagnosis, dealing with it everyday and then feeling as though you have to explain to everyone you get sort of close to why you won't get out of bed some days. Took two years for my diagnosis after being brushed off as a lazy, hormonal teenager. I got told to stop my a levels, go to college part time and just do basically nothing. I didn't do that and now 5 years on I'm months away from graduating university. Find what works for you and run with it 💃🏼💪🏻
Emma, it's so so so good to hear you speak about your cfs. I have had M.E. now for the last 10 years since I was 17 and initially I was bed bound and then housebound for almost a year. To hear someone like yourself, who has such a big following and presence online, speak about this illness and promote awareness for it truly is amazing. About 250,000 people in the U.K. have cfs/M.E. and for some doctors not to even recognise it as an illness is so frustrating. It would be fantastic if (if you felt comfortable to do so) if you could do more videos about your experiences or about the condition in general,- perhaps aimed at family or friends of people with the condition- what to expect, 'what not to say'- that sort of stuff. I know just as much as the next person how extremely isolating and debilitating life with this illness can be. For some people, like myself, it even causes further complications and mental health issues. I admire your strength to talk about your experiences with this condition online and it would be amazing maybe one day to have the privilege to talk to you about your condition- and swap notes even on coping strategies etc haha. Thank you for just speaking out about it. Little to no research is done for this in our country and people are continuing to die from such a devastating disease- any positive promotion has to be a good thing. Keep up the amazing videos in general. I hope your health continues to improve as much as it already has. Rudolph xx
For anyone wondering, there was actually a study done and there's genuinely something wrong physically with your body! It's something to do with the cells and how there's something up with a lot of them. It's not dangerous but it causes the muscles to be tired all the time and causes all of the symptoms of CFS! I have it and I was a very happy bunny when I found out that it's not all in my head x
Sophie Calder a small study found that cells don't convert calcium properly which is vital for respiration. Much bigger studies need to conducted to find a cure, but they won't be cause of the PACE trials and the belief that it's all in your head.
Sophie Calder There's also some test that measures stuff in your body which I read about it being used in the future to measure how severe your fatigue is to determine what benefits you should get. But I think it's pretty obvious that its not all in your head. I mean 80% of my symptoms are physical and it basically just feels like how you do when you do a ton of exercise (and didn't stretch). I'm no expert in biology but unless your brain is literally telling your mitochondria to stop it's definitely physical
A really recent study also suggested that CFS can cause metabolic switch/can be caused by metabolic switch (I can't remember what way around). That basically means your body can't get the necessary energy from the food because it can't always convert food to energy. It's an interesting article if you want to have a look: www.newscientist.com/article/2121162-metabolic-switch-may-bring-on-chronic-fatigue-syndrome/
As someone who suffers with chronic fatigue (yes I'm going to say suffer, because I can't do half the things I want to) it's extremely comforting to hear someone say they can function with it! I've heard nothing but negativity since I got diagnosed but it's beyond a relief that there are people who can function with CFS. I feel like my entire life has come to a halt and I can't make it through full days without napping so it is a relief to hear your story x
I had chronic fatigue from the age of 13 and am only now almost normal. For 6 months I had test, MRIs (doctors thought I might have a Brian tumor which wasn't the funnest thing to hear) and even got told by the head of year at my school that it was all in my head, that was until she started getting sent letters from the nhs to say that I did have cfs and that it wasn't just going to go away, I would sometime sleep for 18 hours and still go back to sleep 4 hours later, I would sleep through family celebration and constantly having to cancel things with friends, I was barely in school and even when I was I was on half day, but to be fair in the end my school and the clinic in the NHS helped so much! I managed to get a C in gcses art and D in English and maths which I am now retaking, and I know that sounds rubbish but I am really proud of my C! now coming out of the other end and I still get people saying I would love to sleep that much! you really really wouldn't!
I have CFS and I just want to say that eating healthily and drinking water helps for some but not all. I have CFS, I drink 3 liters of water a day eat healthily and I'm still ill with it (and a tonne of other things). For some it's not as simple as eating healthily and drinking a lot x
As she said, healthy eating and staying hydrated helps, for some people a little, for some a lot, but it's not a cure. I'm in a similar boat to you, it doesn't do much for me, but it's good to do anyway. Hope you're doing okay.
Hannah Robin 'eating healthily' is non specific within the context of CFS. If you really want to see if diet can help you you have to try different specific diets such as GAPs, autoimmune paleo etc. Diet that helped me the most and I feel forever indebted to is MRT/ LEAP which is where you have a blood test to determine which foods your body is sensitive to and finds inflammatory and which foods are anti inflammatory for you. 'Healthy' foods such as ginger, mango and even lettuce were inflammatory for me! So just because you've tried general healthy eating advice doesn't mean you've exhausted all routes of nutritional healing 😊
Bobby-Jo - It doesn't stop there from being people who aren't helped by diet. And what about those who have ME so severe that they don't have the energy to try all of the diets that are out there or can't afford it? Then there are those suffering with ME who are tube fed and/or have several severe allergies to food which means that they are very limited in what they can eat.
Emma, I know that you said it wasn't a cure but towards the end you started saying "all I did was eat healthy and drink water - it's so simple" and you repeated it a few times which came across, at least to me, as though you were saying that it is simple to improve ME symptoms (you probably didn't mean that but I tend to take things literally and have issues following your videos as they don't have subtitles). I just wanted to ensure that if someone with more severe CFS/ME was watching they knew that it's not their own fault and it's not just that they're not trying enough. It's also worth mentioning that for those with severe ME/CFS, exercise is not recommended by the experts as it can make things worse. The good news is that the cause of ME/CFS is starting to be realised and once the cause is known better treatments will hopefully follow (although it will take a while).
Firstly THANK YOU for making another CFS video. I was diagnosed with CSF 6 years ago, when I was 12, and we had to really fight for my diagnosis. Most people still don't understand it, especially the brain fog or that sleep doesn't fix it. People keep telling me "just drink coffee or fizzy drinks cos caffeine will give you energy"🙄. I'm currently doing my A-levels so my body is really struggling and I have thick brain fog. I find a high protein diet helps and I always have to remind myself to keep hydrated!
The original video you made in 2015 was what showed me that I wasn't healthy. I found your video (after years of watching you) and I felt relief. Someone had a diagnosis for how I've been feeling for years and years! I've barely passed multiple grades of schooling and my life was debilitating. I went to the doctor (holistic) shortly after your video and was diagnosed with CFS as well as Fibro. I had tried everything to combat this. Paleo eating, clean eating (not the 'American diet'), exercising and nothing has ever worked. I drink about a gallon of water a day. I feel like shit 24/7. I'm so glad to read you've found a way to combat the disease. I've wanted to say thank you for the past two years for letting me know I wasn't insane for the way my body is and that no one believed me. Thanks so much Emma, in a lot of ways but especially for bringing invisible illness to a popular youtube platform and not keeping it hidden.
(not sure about writing this but here goes) I suffer from a chronic illness (no further details to be given) and on the 14th of July 2015 I was in the middle of one of the worst attacks I have ever suffered from it. It was about 7:30 in the morning, I had been awake for something close to 30 hours. I was feeling defeated and broken and close to the lowest I have ever felt. I had been struggling with my illness since 2011 and it felt like it was close to beating me. How do I know what the date was? Because as I lay there legitimately thinking about suicide in order to not have to keep living as I was living I found Emma's video about having CFS. And I watched it. And for obvious reasons it resonated with me. And it was on that day I really became a fan of Emma instead of just someone who stopped by and watched the occasional video. I wouldn't go so far as to say that video saved my life, because I doubt I would have actually committed suicide, those are just the thoughts I get when the condition flares up (I also have bipolar depression, but that's more manageable and not the point of this story/ramble) but it seems to have marked a turning point for me as well. Today I find myself funnily enough in a similar position to Emma again. My condition has been controlled better through changes in my lifestyle (including drinking a lot more water and squash. My favourite is lime squash) and most days I feel better and more able to face the world. I am able to leave my house on a regular basis, meet up with friends and pursue my music and just do other things I like. Not sure whether it's a 'thank you' moment or an 'I understand' or just a random ramble about the funny ways life goes but whatever. I guess it's just a way to say congrats Emma, I'm glad you're doing well.
My dad has CFS and having someone like you there to show that it's normal and showing people a public figure is really great for me and my family. Thanks Emma
I have chronic fatigue syndrome. In December 2014 (age 13) I started to feel unwell but me and my family just put it down to having flu so didn't really think anything about it. Since then I started having persistent illness, I.e tiredness, aches, pains, not being able to sleep regardless to being tired. My mum took me to a doctor and I was sent for blood tests. Nothing was picked up so I was referred to the hospital for appointments because I was having too much time out of school so my mum was getting letters threatening a fine. I had 3 appointments until I was diagnosed (September 2016) and I'm now in a pupil referral unit so it's easier for me to cope and still get an education. I'm 16 this year and it's really bad now and it used to annoy me because people would say the exact same things to me about going to sleep early and all that and even though I have a diagnosis people still say it and no matter how much I explain it to people they never listen!
Hey Emma, I had glandular fever and its fall out for about 4 months last year and honestly I have so much respect for you. I can't imagine that feeling of being completely drained and every little cold knocking you out completely, lasting forever. I'm glad you've found ways to manage it better though, and that you are talking about it so you can help others.
I also suffer from chronic fatigue, pots , cvs and re-accuring kidney stones. When I went to see a doctor for my kidneys he told me that cfs doesn't exist and that I need to just do everything I used to do and that resting would only make me more tired as I have 'nothing wrong with me'. It really sucks when people say this. Stay Strong❤
Emma I'm so proud of how much you have improved. I was diagnosed with CFS around the same time as you. I was twelve then. I've suffered with multiple illnesses for as long as I can remember. I had moderate/severe CFS and I now say I have moderate CFS. I'd say the thing that helped me the most was dropping caffeine from my diet. I just started highschool and it is kind of overwhelming, but I can make it through a school day now. I'm so happy that you have shared this with us. Keep working hard!
I have moderate CFS amd Fibromyalgia. Most days I'm bedridden except for a couple of hours each day if I'm really lucky, which I use to try and get my law degree. It's so great to see someone else who is a prominent figure talking about it. The amount of people who don't believe me, and all the friends I've lost due to being "boring and ill all the time" is the worst bit. Thank you Emma, for making us visible and valid x
Marilyn 15 CFS isn't the best name for it as it makes it seem like it's just fatigue. ME (myalgic encephomyelitis) actually means brain, spinal chord and swelling. Doctors who didn't believe shortened it to CFS to make the condition sound less serious and more about sleep, when actually, it effects the whole body.
Marilyn 15 I believe doctors started to refer to ME as CFS because they couldn't prove that everyone with ME has the swelling. So my diagnoses was PVCFS, post viral chronic fatigue syndrome
Henley Phoenix CFS is currently more widely used probably because syndrome basically means "with other symptoms", which is useful as not everyone with CFS experiences the same symptoms. So it's not implying that fatigue is the only symptom although some people may see it as that
Your first video on CFS pushed me to go to the doctor and I got my diagnosis after several months of tests, I now have been diagnosed with Fibromyalgia too.. Mine developed from a really bad case of shingles that effected my brain and I never recovered from it.. I'm slowly getting better, very slowly, but surely. That first video you made, really REALLY helped me understand what was happening because I could relate so much to you. So thank-you for having the courage to speak about it.
I have a bunch of (invisible) chronic illnesses and watching your videos on yours always makes me feel better to know that while you have some different illnesses you still understand, especially since all of my illnesses are invisible too
I have CFS, I would say I'm in the moderate - severe range: I have had months of being entirely bedridden in the past. My symptoms are better now but I'm still very ill and have to be very careful about regulating my activity levels. I can definitely attest to diet and hydration being incredibly important! However I just wanted to make a quick point for those with more severe symptoms: For those with CFS, make sure that you take doctors/anyone else's advice to "lightly exercise" with a LOT of skepticism. The NHS still insists on promoting "Graded Exercise Therapy" for anyone with chronic fatigue, and while it might be useful for those with milder symptoms, it can be incredibly harmful for people whose bodies cannot yet cope with increased activity, and can lead to much worse crashes in energy levels due to post-exertional malaise/fatigue. The studies which recommend it have been widely discredited. For those with severe symptoms, the things that have helped me are continuous heart rate monitoring (look up heart rate monitoring for CFS), being very strict about resting and planning rest days ahead of time, and meditation to help calm the nervous system. Cutting out caffeine and alcohol is an absolute must for me. Increasing activity should be done very carefully and in very small increments. I'm talking about literally monitoring the amount of time spent standing/slowly walking/cooking/cleaning/sitting up let alone going anywhere near a gym. Thank you so much Emma for making these kinds of videos and removing some of the stigma and misconceptions about this awful condition. I just wanted to share my perspective because many people who have the condition are just told to "go and exercise" and for me and many others, this made our condition much, much worse.
I got diagnosed with CFS in July, all thanks to that video two years ago. Thank you so much, Emma. If you hadn't shared your experience then I wouldn't have done my own research and taken that information to my GP, been referred to a CFS specialist, and finally diagnosed. I could not be more grateful :) x
i loved how positive and happy you are in this video. you've changed so much since you started youtube and i am LIVING for this confident emma. congrats and i'm so happy you're finding yourself and becoming healthier. i love you and i'm so proud of you.
Thanks for making this informative video. I found out a few years ago that I'm anemic. Since I guess about my tweens I and the people around me have noticed I'm just always tired, yawning, and up for a nap. I would stay inside all the time, which would fuel depression. After falling to the floor and almost passing out, I looked at it as a serious problem for once. If I take my supplements and force myself out of bed I'm okay. I'm even exercising regularly now. I know it's different but this video makes me feel better. (hydration ftw!)
You're among some very famous people on that list who have achieved a lot (inc you). Goes to show that strength of spirit can overcome the biggest hurdles - and you got spirit by the metric fuck tonne ;)
I have chronic fatigue syndrome and your first video helped me get diagnosed, after years off trying to work out different symptoms separately. I'm so grateful for you sharing your story. I'm the same where a couple of years ago I was at my lowest and went through all sorts of programmes to try and help it. I'm exhausted at the minute as I'm juggling a babysitting and cleaning job and about to start a job of 52 hours a week. I'm struggling a lot mentally about how I'm going to cope with this as I haven't been doing too bad with my cfs this last couple of months, but this stress isn't helping.... thank you again for sharing your story it's good to hear from someone who is a bit more positive on the situation xxxx
past the two minute mark sounds like a series of unforuntate events whch is :((( but honestly looking at you being so open and honest about it is truly amazing, i wouldnt know the first thing about cfs but its always always heartening to see you be this communicative and strong about it, much much love
I have Fibromyalgia, I got diagnosed back in October after believing I had CFS for months. Fatigue and brain fog is horrific, often worse than the chronic pain I have which is a main part of Fibro.
I watched your video two years ago and related so much I decided it was best to talk to a doctor. I can now say I have been clinically diagnosed with chronic fatigue syndrome. Thank you so much for making that video it changed my life. It made my life go from a living hell to absolutely fine and it's all because of you. I can't say it enough, thank you.
Emma, you are awesome. It's so awesome of you to talk about this! It's so nice to learn more about other diseases/syndromes/illnesses. You are awesome!
I'm so happy to hear that you're getting better. I did a project in my Human Anatomy class in college about CFS because of your last video a year ago. And all the research I could do on it was insane! Aside from all the scientific things behind it, I used a lot of articles and videos of people's personal experience with CFS as my references. But it's absolutely wonderful hearing that you're doing better Emma!!
Thank you for making these videos, it's nice to know I'm not alone and somebody else understands. Are there any support groups for CFS/ME online that you would recommend?
Different Emma here to the one you wanted but there's a few good groups on Facebook. I recommend Myalgic Encephalomyelitis Global on Facebook. It's a secret group but you can ask to join. The people that run it really know their stuff and whenever I've posted something the people on it are always so kind and helpful. Even my mum is a member because she gets the answers she needs from it.
Thankyouuuuu! i think it was on Twitter where I asked if you could make another video on this bc I couldn't find the old one and I was in the middle of being diagnosed with CFS. I just got so excited when I saw the title of this video!!!! I had completely forgotten about your video and it's contents bc I didn't understand or relate to it until my friend who has ME, which technically is more extreme than CFS in most cases from what I know, and he was friends with me for about a year before he told me I should go to the doctors and get myself checked for CFS bc he saw in me the way he was ten years previous and he was so worried that if I didn't be figure it out that it would get worse and I'd end up like him. I always thought it was my depression that caused me to not be able to work more than 1-2 months fulltime before crashing for weeks. My memory loss my extreme brain fog my chronic sleep issues and exhaustion. I attributed It all to my depression but even when I wasn't medicated and happy I STILL had those symptoms and they just kept getting worse and worse through the months and years and he told me about things to look for in myself that I didn't even think about to be significant. Like the brain fog and poor cognitive abilities and watch out for the correlation between when I crash and how much I didn't the week(s) previous. The doctor I'm seeing for my MH took a bunch of blood tests to see if it was iron or anything alike and they all came back fine there's no issues but she still insists I don't have CFS and normally I would take that as it is but her points are invalid and I feel like she isn't taking what I say seriously when I say it. She's chalking it up to the depression side of my now diagnosed bipolar disorder but that doesn't explain the continual brain fog and the memory loss and the intense crashes when I neglect to rest properly and the fatigue even when I'm medicated and happy and stable mentally, and exercising and sleeping enough and eating well I'm still exhausted all the time. So I've been treating myself as if I have CFS to see if there would be any improvement and omgosh there has been I feel so much better I have to have a very strict regime of what I call "rest days" "half days" and "full days" and if I don't keep that strict balance and pattern/schedule of those days in my week then I crash and I can't get out of bed and I have to take longer to recuperate and reach the level of energy I had wen I was careful. I'm doing everything I know how to to be healthy and careful and it's helping a LOT but like you said it isn't cured and if I'm not careful I get huge setbacks like if I neglect my rest days for too long and just try to do small things every day then I crash. Once I accidentally slept for 18 1/2hours straight and the following week I slept for 19 1/2 hours. Now when I crash it's only 8 hours average actually sleeping but still can't move from my bed to eat pee or anything the whole day and my body feels like a thousand pounds but it's a huge improvement from crashing for up to a week or two like that if not regularly. I'm gonna go to a new doctor bc it's important to me to have the diagnosis or if it isn't CFS I wanna know what it is cause it makes no sense for all of this to be just depression. Especially since I now have bipolar and only show depressive symptoms when I'm in a depressive episode, not every single day all day long when I'm happy and stable with meds. Thankyou for more ideas on what to help, I'm also soooo dehydrated and always have been. I'm gonna try this and more protein too!!!!! THANKYOU SOMUCHHHHHH
Cutting out caffeine from my diet is by far one of the best I've ever done. I got fed-up with the headaches and the come-downs - safe to say I don't miss it. Also, turns out Vimto is caffeine free! #ShlurpleThePurple
Emma, I just want to thank you for making these videos about your CFS/ME. A while after you posted the first one my mom got ill, and we had no idea what was wrong. I remembered that I had seen your video and I recognized some of the symptoms you talked about. That was almost two years ago now, and things have been hard, shit at times even; But thanks to you and your videos we figured out what it was and she got her diagnose last November. So thank you, cause it might have taken a whole lot longer to understand otherwise ❤︎
I was diagnosed with CFS about a year ago now and nothing seems to help I nap at least four hours every afternoon and still sleep 6 hours every night and sometimes more, the other day I slept from 6pm-8am and still felt dead. My doctor won't let me try any medication because he thinks I'm too young. I'm ill all the time and my muscles are so aches and painful 24/7. I'm just so done😭
Hang in there. To be honest, there's not really any medicine which helps fatigue. Usually doctors can only medicate the pain sometimes associated with it. My advice would be listen to your body, don't try to do more than you can - the more you push, the worse you will feel. Try to make sure you're eating well, getting vitamins, keeping hydrated, all the usual stuff you'd do to keep healthy as it can help keep things stable.
Emma Burraway thank you❤️ I know I push myself too far because I dance 1-4 hours every day and I have a part time job as well as school, I probably should quit my job I literally have no free time or time even to get school work done because I'm always sleeping when I'm not dancing or working. Thank you for your advice I really appreciate it❤️
Please sleep more than 6 hours a night! I don't know your exact age, but even adults should sleep eight hours a night, teenagers even more than that. Also don't sleep too much either, I think 10 hours is a good maximum. Otherwse, I wish you the best. I don't have CFS, but I do have suffer from insomnia sometimes pretty severely.
Just bear in mind the more you push yourself, the worse your symptoms tend to get. Maybe try and think about priorities and figure out what you're capable of now. You don't know the future but hopefully you will improve and be able to do more 😊
I'm a few years late and came across this video while researching CFS because my partner has CFS and I watched your first video on CFS before watching this and I'm so pleased to hear the progress you've made! You seem so much happier and healthier
Idk. Self Diagnosing to the point of actually self medicating of course is not healthy, but I have a few friends that have felt like they have had to self diagnose (while waiting for the doctors to take their feelings seriously) just so they could feel more sane? Maybe it's not healthy, I'm not a professional, but in some cases, it could be helpful to those who are really desperate.
self-diagnosis often leads to people getting complacent and feeling as though they don't need to go to a doctor because they "know" what they have - it runs the risk of something more severe not being properly diagnosed, or that person not getting help/treatment for what they believe they have. i know living in the UK with free healthcare is a total blessing - and i've never had a doctor doubt my suspicions on something - but i just cannot turn around and say to someone "if you haven't gone to a doctor, that's okay! i'm sure you have what you think you have!" i can't sit here and say to people i don't know that their self-diagnosis is accurate or valid. i don't want anyone to think i'm shaming them for self-diagnosing, but i did it for quite some time and there is always still a lingering feeling of self-doubt and uncertainty. there is nothing better than that feeling of relief when you're diagnosed and treatment is suggested.
Vloggery I think your points are valid, and as a long term thing I absolutely don't believe self diagnosing is the best route. However, when you feel like you are the only person that can take what you feel seriously, sometimes that can make you feel like you're going mad. I completely agree that a professional diagnosis is the most relieving thing a sufferer can get, but sometimes that can take a damn long time to receive (I understand you may not have experienced this) and that's in the UK where we're so blessed to have what we have, let alone other countries. When you can't access that medical, professional diagnosis, for a short time, mild self diagnosis can offer a sense of comfort for some. I appreciate your reply, i'm not used to seeing such maturity in the UA-cam comments, it's very refreshing :-)
Vloggery I totally understand and respect your opinion but please try and understand that even people who live in the U.K. and have access to free healthcare can't always easily go to a doctor and tell them how they feel whether it's because of family (which is how it is for me) and I don't go around telling everyone that I think I have this and that! Because I know I haven't been diagnosed by a doctor and I understand that I shouldn't say I have something when it hasn't been properly diagnosed but I am waiting for the day I can go to a doctor and talk to them with confidence about how I feel and then hopefully start down the path to helping myself! I know some people can self diagnose themselves and it can lead to serious problems for them down the line but when I found out about disassociation and depersonalisation it made me feel like I wasn't nuts. As I said I didn't tell anyone I thought I had it not for a long time and even now only a few people who are close to me know that I believe I could possibly have it! I'm not saying that self diagnosis is healthy and I'm not saying it's always acceptable but I can understand that some people including myself needed to find out what was wrong with them because when it's something as obscure and something that many people don't believe is real it can be difficult to know about it at all! It's pretty damn hard going through life thinking you're an emotionless monster when really there is something possibly valid wrong with you. I know not every case is like my own and I understand that and let me tell you I'm dying to go to a doctor because I detest the way I feel but I simply don't have that option and researching my own symptoms and finding out what could be causing me to feel the way that I feel was such an unbelievable relief because I honestly was on the brink and I felt insane and I am thankful that I somewhat self diagnose myself because it gave me hope and knowledge on how to deal with how I feel.
My best friend just got diagnosed with Chronic Fatigue Syndrome and I've known you have it for a while and this seriously really helps me to try to help and just be there for him. Thank you for helping Emma I'm glad he has someone with CFS that he can look up to and see that it can hopefully get better
I'm so happy that you're in a better place now and I 100% agree with everything that you said I've had chronic fatigue syndrome for 4 years now and I completely understand what you're saying and thank you for making these videos and talking about chronic fatigue syndrome since it's so important to be talked about because not everyone completely understands it or knows about it when its definitely something that they should, so thank you for talking about it x
I have CFS and I'd be really interested to know how you coped with it during your break up with Luke? I just got dumped by my long term boyfriend (very hurtful, said he just didn't love me any more etc.) and now my CFS is out of control. I've slept almost solidly for 3 days now. I know it's so unhealthy because I wake up feeling in the exact same emotional state I was when I fell asleep (or sadder because I've just had a dream bout him) and I'm not moving forwards. Any advice?
That's a very fair point- when I knew things were going badly, my CFS did get worse and worse. Now that the dumping has finally happened I'm at an all time low, but I do hope that at some point in the distant future everything will start to get even better than while I was in the relationship, and was experiencing that negativity on a daily basis. Thank you so much for your response and love- it actually reached me when I was in a really shit place so thank you x
Songbehindthetune It must affect people differently because I just broke up with my boyfriend (who I still love) and although I'm extremely sad my fatigue it's any worse. My fatigue gets really bad when I'm stressed tho
Songbehindthetune Hello I'm Niamh, I'm 16, an advocate and I run an organisation. My organisation is called YoungPeople ChronicIllnesses, a few spoonies share our journeys, raise awareness and tell the stories of others. This is done by capturing the good and bad times through Instagram. We have a project called Spoonie Spotlight where we share the stories of all people with chronic illness or disabilities. Today I'm contacting you to ask if you'd share your story to help raise awareness! I personally feel like personal experiences are more powerful than facts because each persons journey with any issue is different. If you're interested please message me back or email youngpeople.chronicillnesses@gmail.com and I'll send further details. Thank you!
This makes me want to cry. I'm pretty sure I don't have CFS but I'm sure I have adrenaline fatigue caused by a really bad case of mono I got two years ago. Ever since then I have been living on 60% on my good days. I can't do workouts that push myself at all. Doing even simple things like running up stairs will drain me. It's been like this for two years since I got sick and I just have been so hopeless recently, especially since I really need to get a job. I am now terrified of working out and going out with friends to places that require a lot of walking or physical activity. But this video really gives me hope. I hope that if I take the advice you have given that I can live a somewhat normal life. Even though I've been told to do some of this stuff before, it helps that it's coming from someone who actually knows what it's like. Thank you so much for this video.
As a CFS sufferer, I just want to applaud you for making this video Emma! You're such a great person and I promise you it gets better. Anyone who's reading this who suffers from CFS, it does get better. You are an amazing person! Just keep being a great person. Sending so much love. 💖
About staying hydrated - Emma, do you still drink all of those teas you talked about in a video on Boxes of Foxes? I drink lots of water but I also drink a lot of herbal and fruit teas. They make me feel really nice and relaxed and help my food go down after meals. But there are times when I will favour them over water with meals. Don't get me wrong, I still drink water! But I prefer teas. Should I cut down on them or am I okay?
Caz Tailby Tea actually dehydrates you so be careful with the amount you consume! I love tea too but my doctor advises me to trade out at least a glass of it for water a day to avoid dehydration.
I think you're okay! As long as you aren't drinking like 10 cups a day with 2 teaspoons of sugar in each one, and as long as you're not drinking ones with caffeine excessively, it's completely fine :) Btw, what's your favourite kind of tea? Mine's peppermint :D
My dad has CFS and seeing you make a video about it has really made me happy to see that other people really do have issues with this as well and are willing to talk about it. Thank You!!
I've had ME since I was 12 (I'm now 24). I'm severe. I'm not bedbound but I'm housebound. And though I've been through periods when I was only moderate, it's been severe for most of the 12 years I've had it. I would be interested in a video that covered the other symptoms of CFS besides the fatigue. Everyone has different symptoms but I for example have chronic pain and I get frequent headaches. I also get muscles twitches and cramps all over my body at the same time. Problems with my digestive system. Problems with my nervous system. Low immune system. I would be interested to know what symptoms you have besides the fatigue
So I just wanna say that years ago I was a big youtube fan and you and Bry were my top favorites but because of my health I stopped and I’ve slowly been getting back into watching UA-camrs and one of your videos that did always stick with me was your chronic fatigue one and how I felt it really related and I thought it was either my depression or anemia, but over the years it got worse and so did the pain, and now I’ve been diagnosed with fibromyalgia. I didn’t even know those things existed until your video and it really made me realize it wasn’t just my fault. I also have numerous mental health issues and my family and everyone still doesn’t get any of my health issues and thinks I’m overreacting or exaggerating (except the literal professionals seeing me) and it was just so validating back then and now to know that someone I looked up to could relate and I really hope I can get back to watching your videos. I used to watch every single upload on 30+ channels and it’s why I stopped, it was too much, but even now I still feel the guilt of missing so many of your videos and like I have to go back to where I left off. I figured I have to know where you are semi-recently with your chronic illness to start me off on my Emma tangent.
Sometimes depression can manifest itself as fatigue same w anxiety bc ur brain is working extra hard without you realizing it... it depends how and when it manifests itself
Fatigue is a symptom of a lot of illness (physical and mental) and CFS is more than just fatigue so I'd say do some research on the symptoms of CFS to see if you fit the criteria.
Thank you so much for talking about Chronic Fatigue Syndrome. Just knowing that there was a UA-camr who I watched and looked up to who also had it made me feel so much better. I related to everything you said in that video two years ago... I became a completely different person when I got sick. It was hard not to be grumpy and snappy with people because I was so exhausted. Sometimes I still am, but I'm doing a lot better, mostly thanks to pacing. I'm really glad to hear that you're doing better, too.
how did you manage to go 17 years without needing penicillin?! I'm allergic to it too but literally found out when i was 2 and have had so many infections since then as well :') did i just have an abnormal amount of infections when i was younger ahah
Vloggery ah okay that makes sense. I'm glad that your symptoms are doing better now though! there was a point where me& my family thought i had cf but its most likely that the symptoms were rooted in a mixture of depression and dissociation instead, which i still kinda get now but not so bad. (i saw a few drs but all were awful so ehh). that was 2.5 years ago now though and its not as controlling as it used to me (what i thought was 'brain fog' and memory problems, were most likely the dissociation and then the exhaustion from the depression). idk, i guess I'll never fully know
Hello! I dunno if this is helpful but amoxicillin causes a rash in patients with glandular fever- it's not actually an allergy to penicillin. Most doctors will avoid prescribing amoxicillin in suspected glandular fever cases because of this. casereports.bmj.com/content/2015/bcr-2015-211622.extract It's good to know as patients that get this kind of rash think they're allergic but as queenofcydonia mentioned, it's good to know that you're not actually allergic as penicillin can be a lifesaving medication!
so glad to hear you're doing better :) I remember watching that video where you cried. I was actually happy for you because it seemed like such a relief for you to be able to say that you have chronic fatigue syndrome. I've struggled with various forms of mental illness, and I screamed with joy the day I got diagnosed. Hope you keep getting better! Even if it never goes away, it's good if you can have less of the really bad days :)
I love that you are filming a video about chronic illnesses. I suffer from Bertolloti's Syndrome, a chronic pain syndrome. A side effect is chronic fatigue. I feel your pain, and I'm happy it's being spoken about. Thank you x
Hey emma, as someone who also sufferes with chronic illness i just want to say thank you for talking about your chronic issues. After 5 years of almost daily and headaches and migraines I was finally diagnosed with chronic migraine syndrome. It was such a releif to be able to say yes I have a diagnosis now what is the next step. We may not share a diaganosia but chronic conditions are no joke and Im glad I have someone to look up to who genuinely understands what it means to have an invisible illness.
Someone in my family has CFS and this video is really good for understanding what they have to go through and what advice to give. Great video, glad to hear you're coping better with your CFS, loving the regular content Emma!
It's concentrated fruit juice that you add water to to make a fruity drink :) We call it 'squash' in the UK. If you're American, think kool-aid, but healthier, and not powder. Squash is a watery, natural fruit flavoured syrup.
super encouraging to see how well youre doing emma!! i was diagnosed with fibromyalgia about two years ago as well, it's a relative of cfs but with less fatigue and more pain. it's really helpful to see another woman dealing with this cap and recognising how hard it is to, say, get up and put your face on when you're having a bad day. thanks for this
Thank you for making both your videos. It made me aware of my cfs and while it limits my life I wouldn't change it for anything because it made me understand things that I wouldn't without it. I don't know what caused it but I do remember that during that time I was incredibly sick and also very depressed and also doing my a levels. I really want to thank you so much. You are a godsend because you uploaded that video on my birthday and I finally found out what it was. Thank you so so much.
I'm going to be a horrible nitpicket here, but the idea that CFS and catching every cold that goes around is caused by a crappy immune system isn't correct. It's caused by an over reactive immune system which is too sensitive. It's a really massive pet peeve of mine. The immune system exists in a fine balance, and if it is tilted towards being more active then any stimuli is going to send it off and activate it, thus even a small infection that maybe a totally healthy person wouldn't get symptoms from can send the immune batcrap crazy and it will go on an all out assault when it isn't needed, causing the symptoms of infection. Most damage done to the body and the symptoms are caused by the immune system not the infection. Its a fascinating area to work in and I'm lucky I get to spend my life in a lab discovering how and why it all works. There are multiple verified correlations between CFS and Glandular Fever. There was one interesting study in the BMJ that showed 12% of patients who had glandular fever developed CFS, furthermore, CFS was predicted largely by the severity of the acute illness rather than by demographic, psychological, or microbiological factors. So the more sick you were with Glandular Fever, the greater a chance of developing CFS. Truth is we have no idea why this is the case and we do not have a mechanism behind it yet. There are some theories but at the moment there is not enough evidence to support it, though one I find possibly the most valid is the fact that Glandular Fever can cause a huge immune response, when the immune system becomes so inflammatory it can be very difficult to turn off again. It may be that the immune system just doesn't turn off properly so is always hyper active and hence any small stimuli makes you very sick, it also means that you have some low grade chronic inflammation and one known effect of this is fatigue as it can severely mess up your energy regulation and metabolism, it also makes sense considering the strong link between severity of illness and increasing CFS incidents.
interesting piece about the immune system - thank you for that. i will say however: i had glandular fever - i got CFS. that's as far as it goes for me. i don't have the best memory in the world but i don't remember having this level of fatigue before glandular fever.
Coming from someone diagnosed with fibromyalgia thirteen years ago, it's always encouraging to see the way you've done so well in spite of having CFS. All the cool things you do and make are a real inspiration for me and I'm sure others as well!
I have chronic fatigue and fibromaglia and I'm 22 It gets me down and I have depression and ptsd and aspersgers too, you are an inspiration to people to talk about it it needs to be more known and I know what it's like to go to the doctors and they mis diagnose you and I come out in a rash when I have penicillin too and I have a low immune too. I'm glad you are being open about it thank you Emma your fab and love your videos and your honesty 😊😊 xx
Chronic fatigue comes with depression, because other people still might think that you are healthy, but you know and feel that you're not. Yet you sure wish that you would be well! Imagine being full of energy, now imagine feeling the exact opposite of it. To me every person who has CFS and hasn't yet committed suicide is a champion, myself included.
Yes i agree , iv had it for about 10 years , although docs here in australia are not keen to say thats what is it. Everyday i want to die to escape the pain and feeling so hopeless , but i have two children that i cant leave , so i deal with feeling like the worlds biggest idiot everyday , while people give me all thier adivce on what they do when they feel tired😢
I have Ehlers Danlos Syndrome, CFS and I'm anaemic. Honestly watching these videos gives me so much hope for the future. I love hearing about people who've taken back control of their bodies. Thank you for making this
I have CFS and one thing I can tell you is: if you feel ill with a virus or something, take the time you need to rest up and recover. One thing that made my symptoms 10x worse was not taking the time out to recover, and as soon as I felt even slightly better I'd rush to catch up on everything I missed while I was ill and it contributed to my immune system and everything else just crashing.
ME and CFS usually affect those who work too hard and push their bodies and minds without giving themselves a break. Since living with M.E I am constantly telling people to take rests when they feel tired and stressed - you have l listen to your body - as I don't want anyone to live like I do.
Not everybody has sudden onset, it can develop as slowly declining health over months or years. Unless you have a bad infection, a lot of stress, are malnourished e.g. from an eating disorder past, digestive problem or chronic overtraining it's unlikely it will happen to you though! Eat well, exercise smart and listen to your body and you're all good!
It's so nice to see someone talk about this. Sometimes you can feel like you're the only one with it. I can tell most people don't take me seriously when I talk about it. This video makes me feel less alone.
... i did. i got many. that's why i ended up in hospital in 2015 when a UTI developed into a kidney infection and doctors were worried i'd turn septic.
Hells balls girl! - the human body is a pile o crap....if it were a car it would have been recalled for potentially fatal design flaw's. I demand a refund!....glad you are coping better with CFS and are now drinking properly!
Enki Aswad oh its actually possible. I have no infections. I only pee like once or twice a day, but then a lot. I dont pee at certain moments. I even had on hiking camp I didnt pee for like 38 hours. because I couldny all day, and didnt need to pee at one camping. my pee is healthy colour, I drink a lot of water. just also a really large bladder. i've weight myself before and after peeing once. I was like a little over a kg lighter. (so assuming the density of water and the waste products) so like little under a liter.
Dutchik Granted, I never had an infection before I started having sex, no matter how little I was drinking. I don't know why I have one like every months if I'm not taking antibiotics, but I have bigger problems at the moment (like the possibility of developing MS... life is great like that ^^")
Dutchik I went to a urologist for that problem, it's standard prophylaxis. I know it's not good, but I only take a low dose after and eventually I'll stop and try something more natural. I have tried ALL the tricks before nothing kept me from ending up peeing blood and crying in an emergency room... it's rare but some women just have that bad luck I guess.
I have a friend with chronic fatigue syndrome and it does affect your school life a lot. She missed a year between GCSE and A levels because she wouldn't have been able to do school then, and now we're in A levels and she does half days and she naps at lunch and such. But she's a Smart so she's not failing- although I can easily see how one could fall behind with work due to missing a lot of the day. Happily, my friend has a lot of support and she is good at school, and I see her eat healthily and stay hydrated so I can second-hand vouch for a good diet to help CFS! I think you're doing great Emma, and anyone with cfs, you're goddamn resilient, I admire you!
I've had severe cfs for 15 years, and while nothing seems to help after innumerable treatments, it's encouraging to see someone else improve. Thanks for talking about it!
As someone who has fibromyalgia and CFS I truly have so respect for how you are so strong and how you don't let it stop you from doing what you want. I also suffered from not having enough water so I started drinking more and its shocking how much difference it makes. Aspartame is also a massive trigger for me which is found in nearly all energy drinks. Thank you for talking about CFS, it really helps to know I'm not alone and I'm glad to hear you're doing better! ^w^
I have cfs after huge amounts of stress and a throat infection and haven’t really felt okay mentally and physically since about October, and this video honestly made me cry. it made me feel more comfortable about who i am and what my body is doing. thank you.
"CFS is in your head", do you know what else is in your head, Mental Health disorders such as depression, anxiety, schizophrenia etc, gender dysphoria, other really shit things, if CFS is in your head, sure it's not as bad as what I've just mentioned but it's as valid
The difference is that doctors who believe it is a psychological problem will try and treat it like a psychological problem when it isn't one. It can be very demoralising to have a physical condition and for medical professionals to say you just need therapy. Imagine breaking your leg and your doctor telling you its in your head, and how frustrating that would be. Just like in the past when doctors thought mental disorders were caused by your spleen or your blood - if you don't know what causes something, you can't treat it very well! That's not to put down or dismiss mental disorders such as those you've mentioned. But it is important that these conditions are recognised for what they are or they won't be treated properly.
Yes there is a definite connection between CFS and mental health conditions, for sure. I also have CFS and it did cause me significant anxiety (especially when I wasn't sure what was wrong with me). I was lucky to find an excellent doctor who took my symptoms seriously and was able to see that although CFS and mental health conditions inform each other (constant anxiety can sap energy, and low energy can cause anxiety, for instance), they were not the same thing and need treating differently. I'm so sorry to hear that your doctor doesn't take CFS seriously. Unfortunately it is an under researched and under funded area.
I also have diagnosed CFS after a bad bout of glandular fever 3 1/2 years ago, off to the Drs again this week to try and get some help from a different doctor. It's actually so tiring being tired all the time, so good to see an update video where you're managing your symptoms better :)
Hi Emma. This video is really interesting. My sister and a close family friend both suffer with ME/CFS and they go through the same things you go through as described in the video. ME/CFS is actually caused by a build up of toxins in the body that the body is unable to flush out. There is, however, a cure which is flushing the toxins out of the body. I don't know how to do this but I would suggest that you get in touch with Dr Raymond Perrin, the UK's leading expert in ME/CFS, if you want to find out more. Hope this helps people. Xxx
“A fast food mc-restaurant”! Brilliant! Also thank you very much for this video,I’ve struggled with chronic fatigue syndrome for around 18 months - 2 years. It’s so difficult to know what to do when or how much to do in the day. I have days when I just give in to the condition and days when I think I can do anything and everything. I am working and enjoying work but I’m very tired at work.
if you think you have the syndrome, here is a number of things that can contribute to fatigue (not to disprove you or anything, if you think you have it, see a doctor, but these are just some examples): - fatigue can be caused by pretty much everything, especially if you are growing (puberty-wise) - and up until you stop growing, your hormones are raging and your body is changing at an alarming speed, so therefore, you are bound to be tired a lot of the time. if you think about how much your body is changing it really puts it into perspective. - mental health can also affect physical health. fatigue can be a symptom of things like depression and anxiety, as your mind is constantly racing or your mind is constantly flat. its important to think about whether you are actually happy or not. happiness releases energy giving endorphins, sadness doesn't. look after your mind and your heart! - like emma said, your diet! do you actually eat vegetables? do you get any nutrients at all? if you live on instant noodles and diet coke, then you must realise that there is no way your body can do anything but struggle to even keep you alive. ever since humans came into existence, we have always relied on plant based foods to feed us, not just meat or whatever. take care of yourself! drink fruit juice. fruit pretty much removes your need to eat something sweet, and its good for you too! just look after your teeth so before self diagnosing yourself (like emma said, its unhealthy), evaluate your body and your mind and try these things out! if you genuinely think you have it, see a doctor and pester them until they help you!
vegetables! greens! alkaline foods! protein!!! water!!!! my diet was TRASH in 2015 like i was the worst vegan in the world i would cram smoothies for breakfast and then eat... like crisps and vegan junk food all day. no goodness whatsoever after like 11am!
Vloggery right! vegan is all nice and good and whatever but you seriously need to check what you're actually eating cause it's mostly fake shit :d no offence. also smoothies are gross I really can't deal with them! Drinking sloppy spinach and bananas? No thanks u
@ur favourite piglet Vegan food isn't mostly fake stuff. It's fruit, veggies, beans, and grains. There's an abundance of whole, plant-based foods available to us. How is a meal of brown rice, black beans, broccoli and spinach fake? There are ways to be a healthy vegan and ways to be an unhealthy one, just like there are ways to be a healthy meat-eater and ways to be an unhealthy one.
Vicky M okay chill i meant people choose to eat a lot of substitute foods/vegan friendly rather than fresh things like fruit and veg, for example Emma talked about how she ate crisps all day rather than healthy stuff. Of course proper meals aren't fake stuff fam
Glad to hear you're doing so much better! I've had ME/CFS for 13 years. I hate to be one of the masses saying "have you tried....?" But I think I should tell you that 2 years ago I also got diagnosed with POTS. (Postural Orthostatic Tachycardia Syndrome) If you look it up on the NHS website it says 1/3 people with CFS have POTS. Which is nuts. I can't believe I had CFS for 11 years without finding that out. Anyway, I thought I should mention it as some of the things you talk about like drinking lots of water and no caffeine are things recommended for POTS and in your first video you talk about washing up and cooking (I.e. standing still activities) being the most exhausting. All these are flags for POTS to me. If you look into it you might be able to find you can manage your energy even better than you can now. There's no miracle cure for POTS either but it is useful to know a bit more about what's going on in my body I find. I've made some videos on this. I've tried a couple of POTS medications but they both made me feel awful. I hope this comment is useful and not annoying! Ps. I remember watching your I'm so lazy video years and years ago and thinking I relate to every word of this so much, if only I could say it is because I am lazy, that would be so much better than having ME. You are not lazy Emma. Thanks for making awesome videos.
Aw Emma I'm so happy you're feeling better and found what you need to do to help combat your fatigue I remember the old video and you've come so far ❤️
2 Years on here too- I commented on your original video saying I felt the same and I hoped I'd get a diagnosis (something like that) I have no CFS diagnosis, but I am getting closer to any diagnosis. It's looking to be auto immune, which explains the fatigue. These last couple of years seeing you doing your thing on youtube has helped keep me going to achieve what I want to achieve- you're doing it with your CFS, so I can do it with my... whatever the fuck I have!! I want to be a professional portrait artist. Well, I am a professional portrait artist, but I want to be able to live off it. AAAaaany way. Thank you Emma for being you and good on you for pushing on through, even though it's difficult at times.
I was diagnosed with fibromyalgia about 7 months ago and having a diagnoses / name for what you're going through helps so much. I haven't been good at managing it this last month but once you can set a good routine, diet and active lifestyle it's loads of change and the insomnia pain and any other symptoms calm down so much. Most days seem impossible to get through but it can happen! Thanks for sharing
I'm in the exact same position as you, Emma. I had glandular fever when I was 14, and I developed chronic fatigue after that. I'm 19 now, and I'm never ok for a long period of time. The affect it has on your body is crazy, and I don't know if you have experienced this - but the stigma around it is awful. People don't understand that there isn't a cure, it's not something where you can accumulate health and get better. It's a real test of time. I hope that one day I can get even better than I am now, but if that day doesn't come, then I'm trying to make my peace with that. Loads of love to anyone else going through this
can somebody link the original video? it's not coming up when i search it on youtube :(
i have it unlisted, will try and find it in the morning :)
ah here you go ua-cam.com/video/ELrn7Ov4H54/v-deo.html
thank you Emma :)
Vloggery - Great video, I also have had CFS for many years. I believe that it is something that the government is doing to us. Many people that have this illness, also consider themselves as being "targeted individuals." They are being harassed by government/intelligence agencies for being political dissidents, whistleblowers, or other unknown reasons.
hi everyone just puttin this message because iv had cronic fertigue for 5 years and it as wreaked my life.but was reading up on things that can help it and saw on a site about pink himalayin salt for food so i tried it 6 days ago.with in those 6 days iv iproved 100%.any person with cronic fatigue me try this its less than 3 pound an as worked for me after 5 years of trying everythink.av a try i saw it on a site last week when i was looking at cronic fatigue an me.just try i was doing exercise eating better trying everythink it didnt work then i tried this.whith in 6 days i can go the gym a feel great.i hope this works 4 u cos cronic fatigue me as been destroying my life for years good luck.
To all my fellow CFS sufferers, you're doing great, keep going. ♥
BadAlice i
BadAlice thank you ❤️
BadAlice ❤
BadAlice 💕❤
Thank you❤️
I'm a young carer (If 17 is still considered 'young' at this point) for my Mum who has CFS and ME (Basically the same thing). I love these videos and being able to talk to others in the comments who understand the condition and have loved ones who live with it. It really bugs me when people just call it laziness, sometimes I have to sit on the toilet next to the shower when my mum washes just in case she faints from exhaustion (which has happened in the past) and that shit isn't just simply being lazy. As well as thanking you for making videos about CFS I also want to thank you, Emma, for all of your content and work put into that content because for me - juggling college and cooking and cleaning and laundry and shopping and general housekeeping for my 3 siblings alongside my dad - your videos really help me chill out and relax after a hard day. Been watching you for years, and even if the word is pretentious and annoying now, you are really RAD
Thank you for looking after your mum and family (sounds weird but I hope you get what I mean!) As someone with CFS, I always think people who understand and want to help are amazing!
oh man the amount of times i've had to sit down in the shower because i've been worried about passing out and hitting my head... living alone can be scary! also if sit in the bath too long and its too hot i have to get out and lay on the bathroom floor immediately, i've genuinely passed out before lol LIFE IS FUN
Amber Cumberland holy shit the shower thing is a thing?? ive had trouble with that most my teen years and just sit down as much as possible now, i thought that was just because im a bit overweight and in horrible shape. the more i hear about this the more i think it sounds like me
Meg Jones You should definitely see your doctor about it, it could be CFS because it can be triggered by all sorts of things, from a virus or pregnancy or even by being a little bit overweight. Being overweight shouldn't make you feel faint in the shower or bath, defo go to the doctor and get it checked out ❤
Vloggery My mum gets paranoid but I'm the one who insists on sitting outside to listen out for her! It gives me really bad anxiety sometimes, to the point I will sleep on the sofa at night so I'm near her to make sure shes okay during the night (going to toilet, using stairs etc) I couldn't stand the thought of her being on her own like you are! It must get stressful handling CFS living alone, I really feel for you ❤
Hi Emma, as someone who studies medicine, I thought you might be interested to know that amoxicillin often causes a nasty rash in patients with glandular fever- it's a recognised thing and not actually an allergic reaction. For that very reason we're taught to not prescribe amoxicillin if glandular fever is suspected as it can cause the rash- you shouldn't have been prescribed it!. You can Google it to see lots more information about it! I just thought it would be helpful to know as penicillins can be life-saving drugs at times and I wouldn't want you to not be given them in fear of an allergic reaction (if the drs didn't realise you never actually had an allergic reaction- just a bad cross reaction with the glandular fever!). I hope this is helpful and good luck with everything :)
That's actually fascinating to know!
Thanks! casereports.bmj.com/content/2015/bcr-2015-211622.full.pdf This paper by the British Medical Journal describes a case exactly like Emma's!
Yoooo maybe you can sue for malpractice and get $$$
Suing the NHS, though... just feels wrong :/ Plus, she'd have to get verification from Doctors in court that it was the bad reaction that caused the CFS. If you could sue for that, you'd get tons, because it's a life affecting illness that potentially took Emma out of a normal working life. Either way, it's like the CFS came from the Glandular Fever, so she wouldn't be able to claim for malpractice... ANYWAY. I realise what you were saying was a joke :P
perfect Hey There! was just going to comment the same, in the middle of studies atm and was literally just revising EBV
I've had chronic fatigue since I got glandular fever when I was 4/5 years old(?) and I'm now 16. It's honestly been a living hell, when I first got diagnosed (which took bloody forever to get the diagnosis) I was the worst it had been. Now, I have basically no social life outside of school because I'm too anxious incase I get over tired. People don't realise how horrible it is living with CFS, I've lost many friends due to the fact they do not understand it, but it's so simple to understand (for me). Its not that hard to get your head around the fact someone will get sooo very tired doing the bare minimum sometimes. I have also been developing POTS symptoms over the years and it makes CFS 100X worse. It's so nice for a big youtuber to be going through something like us viewers that have CFS, and to not feel so alone. ❤️
Molly Start going through the same thing atm. Hell.
I'm a permanently exhausted pigeon.
same
I have.. a Full time time job in retail.
Part time 3D artist / texture artist.
I've called myself a flat cat. I haven't seen enough tired pigeons to really compare.
same :-(
TechGaming45
Watch this friend
ua-cam.com/video/VT-wWGDEbXU/v-deo.html
Hi Emma, around 4 years ago I was diagnosed with cfs/me. At the ago of 13 I pretty much thought my life was over. The diagnosis was based on a depression episode I went through at an early age. After this I spiralled downhill, unable to go to school, unable to see my friends, unable to do most things everyone else could do, this took a toll on not only my mental health but my aspirations and to be honest I gave up hope of ever getting better after failed treatments. However, late last year I decided to do the lightning process, after my mum suggested it I thought I had nothing more to lose so I went for it, as of date, I haven't suffered illness and I'm completely cured of ME, if you ever wanted to get in touch I think it would be amazing if you could do the process, also raising awareness as your Chanel is so large would inform lots of other unaware viewers suffering with the illness. I honestly think the lightning process completely changed my life, thanks for reading 😊 x
Holy shit I am actually so glad that someone is talking about how frustrating the whole thing is.
Diagnosis, dealing with it everyday and then feeling as though you have to explain to everyone you get sort of close to why you won't get out of bed some days.
Took two years for my diagnosis after being brushed off as a lazy, hormonal teenager.
I got told to stop my a levels, go to college part time and just do basically nothing.
I didn't do that and now 5 years on I'm months away from graduating university.
Find what works for you and run with it 💃🏼💪🏻
Emma, it's so so so good to hear you speak about your cfs. I have had M.E. now for the last 10 years since I was 17 and initially I was bed bound and then housebound for almost a year. To hear someone like yourself, who has such a big following and presence online, speak about this illness and promote awareness for it truly is amazing. About 250,000 people in the U.K. have cfs/M.E. and for some doctors not to even recognise it as an illness is so frustrating. It would be fantastic if (if you felt comfortable to do so) if you could do more videos about your experiences or about the condition in general,- perhaps aimed at family or friends of people with the condition- what to expect, 'what not to say'- that sort of stuff. I know just as much as the next person how extremely isolating and debilitating life with this illness can be. For some people, like myself, it even causes further complications and mental health issues.
I admire your strength to talk about your experiences with this condition online and it would be amazing maybe one day to have the privilege to talk to you about your condition- and swap notes even on coping strategies etc haha.
Thank you for just speaking out about it. Little to no research is done for this in our country and people are continuing to die from such a devastating disease- any positive promotion has to be a good thing.
Keep up the amazing videos in general. I hope your health continues to improve as much as it already has.
Rudolph xx
For anyone wondering, there was actually a study done and there's genuinely something wrong physically with your body! It's something to do with the cells and how there's something up with a lot of them. It's not dangerous but it causes the muscles to be tired all the time and causes all of the symptoms of CFS! I have it and I was a very happy bunny when I found out that it's not all in my head x
Sophie Calder +
Sophie Calder a small study found that cells don't convert calcium properly which is vital for respiration. Much bigger studies need to conducted to find a cure, but they won't be cause of the PACE trials and the belief that it's all in your head.
Sophie Calder There's also some test that measures stuff in your body which I read about it being used in the future to measure how severe your fatigue is to determine what benefits you should get. But I think it's pretty obvious that its not all in your head. I mean 80% of my symptoms are physical and it basically just feels like how you do when you do a ton of exercise (and didn't stretch). I'm no expert in biology but unless your brain is literally telling your mitochondria to stop it's definitely physical
A really recent study also suggested that CFS can cause metabolic switch/can be caused by metabolic switch (I can't remember what way around). That basically means your body can't get the necessary energy from the food because it can't always convert food to energy. It's an interesting article if you want to have a look:
www.newscientist.com/article/2121162-metabolic-switch-may-bring-on-chronic-fatigue-syndrome/
Fricking Taylor mitochondria make energy or atp which is used for all processes in the cells :)
As someone who suffers with chronic fatigue (yes I'm going to say suffer, because I can't do half the things I want to) it's extremely comforting to hear someone say they can function with it! I've heard nothing but negativity since I got diagnosed but it's beyond a relief that there are people who can function with CFS. I feel like my entire life has come to a halt and I can't make it through full days without napping so it is a relief to hear your story x
I had chronic fatigue from the age of 13 and am only now almost normal. For 6 months I had test, MRIs (doctors thought I might have a Brian tumor which wasn't the funnest thing to hear) and even got told by the head of year at my school that it was all in my head, that was until she started getting sent letters from the nhs to say that I did have cfs and that it wasn't just going to go away, I would sometime sleep for 18 hours and still go back to sleep 4 hours later, I would sleep through family celebration and constantly having to cancel things with friends, I was barely in school and even when I was I was on half day, but to be fair in the end my school and the clinic in the NHS helped so much! I managed to get a C in gcses art and D in English and maths which I am now retaking, and I know that sounds rubbish but I am really proud of my C! now coming out of the other end and I still get people saying I would love to sleep that much! you really really wouldn't!
I have CFS and I just want to say that eating healthily and drinking water helps for some but not all. I have CFS, I drink 3 liters of water a day eat healthily and I'm still ill with it (and a tonne of other things). For some it's not as simple as eating healthily and drinking a lot x
As she said, healthy eating and staying hydrated helps, for some people a little, for some a lot, but it's not a cure. I'm in a similar boat to you, it doesn't do much for me, but it's good to do anyway. Hope you're doing okay.
i mentioned all of what you just said in the video - it's not a cure, and i'm fortunate to only have a mild case
Hannah Robin 'eating healthily' is non specific within the context of CFS. If you really want to see if diet can help you you have to try different specific diets such as GAPs, autoimmune paleo etc. Diet that helped me the most and I feel forever indebted to is MRT/ LEAP which is where you have a blood test to determine which foods your body is sensitive to and finds inflammatory and which foods are anti inflammatory for you. 'Healthy' foods such as ginger, mango and even lettuce were inflammatory for me! So just because you've tried general healthy eating advice doesn't mean you've exhausted all routes of nutritional healing 😊
Bobby-Jo - It doesn't stop there from being people who aren't helped by diet. And what about those who have ME so severe that they don't have the energy to try all of the diets that are out there or can't afford it? Then there are those suffering with ME who are tube fed and/or have several severe allergies to food which means that they are very limited in what they can eat.
Emma, I know that you said it wasn't a cure but towards the end you started saying "all I did was eat healthy and drink water - it's so simple" and you repeated it a few times which came across, at least to me, as though you were saying that it is simple to improve ME symptoms (you probably didn't mean that but I tend to take things literally and have issues following your videos as they don't have subtitles).
I just wanted to ensure that if someone with more severe CFS/ME was watching they knew that it's not their own fault and it's not just that they're not trying enough.
It's also worth mentioning that for those with severe ME/CFS, exercise is not recommended by the experts as it can make things worse.
The good news is that the cause of ME/CFS is starting to be realised and once the cause is known better treatments will hopefully follow (although it will take a while).
Firstly THANK YOU for making another CFS video. I was diagnosed with CSF 6 years ago, when I was 12, and we had to really fight for my diagnosis. Most people still don't understand it, especially the brain fog or that sleep doesn't fix it. People keep telling me "just drink coffee or fizzy drinks cos caffeine will give you energy"🙄. I'm currently doing my A-levels so my body is really struggling and I have thick brain fog. I find a high protein diet helps and I always have to remind myself to keep hydrated!
The original video you made in 2015 was what showed me that I wasn't healthy. I found your video (after years of watching you) and I felt relief. Someone had a diagnosis for how I've been feeling for years and years! I've barely passed multiple grades of schooling and my life was debilitating. I went to the doctor (holistic) shortly after your video and was diagnosed with CFS as well as Fibro. I had tried everything to combat this. Paleo eating, clean eating (not the 'American diet'), exercising and nothing has ever worked. I drink about a gallon of water a day. I feel like shit 24/7. I'm so glad to read you've found a way to combat the disease. I've wanted to say thank you for the past two years for letting me know I wasn't insane for the way my body is and that no one believed me. Thanks so much Emma, in a lot of ways but especially for bringing invisible illness to a popular youtube platform and not keeping it hidden.
(not sure about writing this but here goes)
I suffer from a chronic illness (no further details to be given) and on the 14th of July 2015 I was in the middle of one of the worst attacks I have ever suffered from it. It was about 7:30 in the morning, I had been awake for something close to 30 hours. I was feeling defeated and broken and close to the lowest I have ever felt. I had been struggling with my illness since 2011 and it felt like it was close to beating me.
How do I know what the date was? Because as I lay there legitimately thinking about suicide in order to not have to keep living as I was living I found Emma's video about having CFS. And I watched it. And for obvious reasons it resonated with me. And it was on that day I really became a fan of Emma instead of just someone who stopped by and watched the occasional video.
I wouldn't go so far as to say that video saved my life, because I doubt I would have actually committed suicide, those are just the thoughts I get when the condition flares up (I also have bipolar depression, but that's more manageable and not the point of this story/ramble) but it seems to have marked a turning point for me as well. Today I find myself funnily enough in a similar position to Emma again. My condition has been controlled better through changes in my lifestyle (including drinking a lot more water and squash. My favourite is lime squash) and most days I feel better and more able to face the world. I am able to leave my house on a regular basis, meet up with friends and pursue my music and just do other things I like.
Not sure whether it's a 'thank you' moment or an 'I understand' or just a random ramble about the funny ways life goes but whatever. I guess it's just a way to say congrats Emma, I'm glad you're doing well.
Hang in there buddy, never give up, never say die, you fight and keep fighting - if anything just to stick 2 fingers up to the hand life dealt you.
My dad has CFS and having someone like you there to show that it's normal and showing people a public figure is really great for me and my family. Thanks Emma
I have chronic fatigue syndrome. In December 2014 (age 13) I started to feel unwell but me and my family just put it down to having flu so didn't really think anything about it. Since then I started having persistent illness, I.e tiredness, aches, pains, not being able to sleep regardless to being tired. My mum took me to a doctor and I was sent for blood tests. Nothing was picked up so I was referred to the hospital for appointments because I was having too much time out of school so my mum was getting letters threatening a fine. I had 3 appointments until I was diagnosed (September 2016) and I'm now in a pupil referral unit so it's easier for me to cope and still get an education. I'm 16 this year and it's really bad now and it used to annoy me because people would say the exact same things to me about going to sleep early and all that and even though I have a diagnosis people still say it and no matter how much I explain it to people they never listen!
Hey Emma, I had glandular fever and its fall out for about 4 months last year and honestly I have so much respect for you. I can't imagine that feeling of being completely drained and every little cold knocking you out completely, lasting forever. I'm glad you've found ways to manage it better though, and that you are talking about it so you can help others.
I also suffer from chronic fatigue, pots , cvs and re-accuring kidney stones. When I went to see a doctor for my kidneys he told me that cfs doesn't exist and that I need to just do everything I used to do and that resting would only make me more tired as I have 'nothing wrong with me'. It really sucks when people say this. Stay Strong❤
HollyOakley sending hugs! 💗 there are many natural remedies that can help dissolve kidney stones if you don't already know that 💋💋
Emma I'm so proud of how much you have improved. I was diagnosed with CFS around the same time as you. I was twelve then. I've suffered with multiple illnesses for as long as I can remember. I had moderate/severe CFS and I now say I have moderate CFS. I'd say the thing that helped me the most was dropping caffeine from my diet. I just started highschool and it is kind of overwhelming, but I can make it through a school day now. I'm so happy that you have shared this with us. Keep working hard!
I'm so glad that things are looking up for you :)> x
I have moderate CFS amd Fibromyalgia. Most days I'm bedridden except for a couple of hours each day if I'm really lucky, which I use to try and get my law degree. It's so great to see someone else who is a prominent figure talking about it. The amount of people who don't believe me, and all the friends I've lost due to being "boring and ill all the time" is the worst bit. Thank you Emma, for making us visible and valid x
I've never realised that ME and CFS were the same thing. My mum always just referred to it as ME (she suffers from it too)
Same here.
Marilyn 15 I have it too, as well as my own mother. It sucks :(
Marilyn 15 CFS isn't the best name for it as it makes it seem like it's just fatigue. ME (myalgic encephomyelitis) actually means brain, spinal chord and swelling. Doctors who didn't believe shortened it to CFS to make the condition sound less serious and more about sleep, when actually, it effects the whole body.
Marilyn 15 I believe doctors started to refer to ME as CFS because they couldn't prove that everyone with ME has the swelling. So my diagnoses was PVCFS, post viral chronic fatigue syndrome
Henley Phoenix CFS is currently more widely used probably because syndrome basically means "with other symptoms", which is useful as not everyone with CFS experiences the same symptoms. So it's not implying that fatigue is the only symptom although some people may see it as that
Your first video on CFS pushed me to go to the doctor and I got my diagnosis after several months of tests, I now have been diagnosed with Fibromyalgia too.. Mine developed from a really bad case of shingles that effected my brain and I never recovered from it.. I'm slowly getting better, very slowly, but surely. That first video you made, really REALLY helped me understand what was happening because I could relate so much to you. So thank-you for having the courage to speak about it.
that shirt looks really good on you emma :)
I have a bunch of (invisible) chronic illnesses and watching your videos on yours always makes me feel better to know that while you have some different illnesses you still understand, especially since all of my illnesses are invisible too
I have CFS, I would say I'm in the moderate - severe range: I have had months of being entirely bedridden in the past. My symptoms are better now but I'm still very ill and have to be very careful about regulating my activity levels. I can definitely attest to diet and hydration being incredibly important! However I just wanted to make a quick point for those with more severe symptoms:
For those with CFS, make sure that you take doctors/anyone else's advice to "lightly exercise" with a LOT of skepticism. The NHS still insists on promoting "Graded Exercise Therapy" for anyone with chronic fatigue, and while it might be useful for those with milder symptoms, it can be incredibly harmful for people whose bodies cannot yet cope with increased activity, and can lead to much worse crashes in energy levels due to post-exertional malaise/fatigue. The studies which recommend it have been widely discredited.
For those with severe symptoms, the things that have helped me are continuous heart rate monitoring (look up heart rate monitoring for CFS), being very strict about resting and planning rest days ahead of time, and meditation to help calm the nervous system. Cutting out caffeine and alcohol is an absolute must for me. Increasing activity should be done very carefully and in very small increments. I'm talking about literally monitoring the amount of time spent standing/slowly walking/cooking/cleaning/sitting up let alone going anywhere near a gym.
Thank you so much Emma for making these kinds of videos and removing some of the stigma and misconceptions about this awful condition. I just wanted to share my perspective because many people who have the condition are just told to "go and exercise" and for me and many others, this made our condition much, much worse.
Thank you
I got diagnosed with CFS in July, all thanks to that video two years ago. Thank you so much, Emma. If you hadn't shared your experience then I wouldn't have done my own research and taken that information to my GP, been referred to a CFS specialist, and finally diagnosed. I could not be more grateful :) x
so proud of how far you've come with it emma
i loved how positive and happy you are in this video. you've changed so much since you started youtube and i am LIVING for this confident emma. congrats and i'm so happy you're finding yourself and becoming healthier. i love you and i'm so proud of you.
Thanks for making this informative video. I found out a few years ago that I'm anemic. Since I guess about my tweens I and the people around me have noticed I'm just always tired, yawning, and up for a nap. I would stay inside all the time, which would fuel depression. After falling to the floor and almost passing out, I looked at it as a serious problem for once. If I take my supplements and force myself out of bed I'm okay. I'm even exercising regularly now. I know it's different but this video makes me feel better. (hydration ftw!)
Emma, you are on a Wikipedia page called "List of people with Chronic Fatigue Syndrome"!!
oh... the joy lmao
You're among some very famous people on that list who have achieved a lot (inc you). Goes to show that strength of spirit can overcome the biggest hurdles - and you got spirit by the metric fuck tonne ;)
I have chronic fatigue syndrome and your first video helped me get diagnosed, after years off trying to work out different symptoms separately. I'm so grateful for you sharing your story. I'm the same where a couple of years ago I was at my lowest and went through all sorts of programmes to try and help it. I'm exhausted at the minute as I'm juggling a babysitting and cleaning job and about to start a job of 52 hours a week. I'm struggling a lot mentally about how I'm going to cope with this as I haven't been doing too bad with my cfs this last couple of months, but this stress isn't helping.... thank you again for sharing your story it's good to hear from someone who is a bit more positive on the situation xxxx
Feeling ill too dude. You're such a great person as well.
past the two minute mark sounds like a series of unforuntate events whch is :((( but honestly looking at you being so open and honest about it is truly amazing, i wouldnt know the first thing about cfs but its always always heartening to see you be this communicative and strong about it, much much love
I have Fibromyalgia, I got diagnosed back in October after believing I had CFS for months.
Fatigue and brain fog is horrific, often worse than the chronic pain I have which is a main part of Fibro.
I watched your video two years ago and related so much I decided it was best to talk to a doctor. I can now say I have been clinically diagnosed with chronic fatigue syndrome. Thank you so much for making that video it changed my life. It made my life go from a living hell to absolutely fine and it's all because of you. I can't say it enough, thank you.
Off topic but I don't know if it's the pink colour or lighting or the natural make up but you look absolutely fabulous in this video!
Emma, you are awesome. It's so awesome of you to talk about this! It's so nice to learn more about other diseases/syndromes/illnesses. You are awesome!
"Fast food mcrestaurant" i love you
I'm so happy to hear that you're getting better. I did a project in my Human Anatomy class in college about CFS because of your last video a year ago. And all the research I could do on it was insane! Aside from all the scientific things behind it, I used a lot of articles and videos of people's personal experience with CFS as my references. But it's absolutely wonderful hearing that you're doing better Emma!!
Thank you for making these videos, it's nice to know I'm not alone and somebody else understands. Are there any support groups for CFS/ME online that you would recommend?
Different Emma here to the one you wanted but there's a few good groups on Facebook. I recommend Myalgic Encephalomyelitis Global on Facebook. It's a secret group but you can ask to join. The people that run it really know their stuff and whenever I've posted something the people on it are always so kind and helpful. Even my mum is a member because she gets the answers she needs from it.
Thank you x
Thankyouuuuu! i think it was on Twitter where I asked if you could make another video on this bc I couldn't find the old one and I was in the middle of being diagnosed with CFS. I just got so excited when I saw the title of this video!!!! I had completely forgotten about your video and it's contents bc I didn't understand or relate to it until my friend who has ME, which technically is more extreme than CFS in most cases from what I know, and he was friends with me for about a year before he told me I should go to the doctors and get myself checked for CFS bc he saw in me the way he was ten years previous and he was so worried that if I didn't be figure it out that it would get worse and I'd end up like him. I always thought it was my depression that caused me to not be able to work more than 1-2 months fulltime before crashing for weeks. My memory loss my extreme brain fog my chronic sleep issues and exhaustion. I attributed It all to my depression but even when I wasn't medicated and happy I STILL had those symptoms and they just kept getting worse and worse through the months and years and he told me about things to look for in myself that I didn't even think about to be significant. Like the brain fog and poor cognitive abilities and watch out for the correlation between when I crash and how much I didn't the week(s) previous.
The doctor I'm seeing for my MH took a bunch of blood tests to see if it was iron or anything alike and they all came back fine there's no issues but she still insists I don't have CFS and normally I would take that as it is but her points are invalid and I feel like she isn't taking what I say seriously when I say it. She's chalking it up to the depression side of my now diagnosed bipolar disorder but that doesn't explain the continual brain fog and the memory loss and the intense crashes when I neglect to rest properly and the fatigue even when I'm medicated and happy and stable mentally, and exercising and sleeping enough and eating well I'm still exhausted all the time.
So I've been treating myself as if I have CFS to see if there would be any improvement and omgosh there has been I feel so much better I have to have a very strict regime of what I call "rest days" "half days" and "full days" and if I don't keep that strict balance and pattern/schedule of those days in my week then I crash and I can't get out of bed and I have to take longer to recuperate and reach the level of energy I had wen I was careful. I'm doing everything I know how to to be healthy and careful and it's helping a LOT but like you said it isn't cured and if I'm not careful I get huge setbacks like if I neglect my rest days for too long and just try to do small things every day then I crash. Once I accidentally slept for 18 1/2hours straight and the following week I slept for 19 1/2 hours. Now when I crash it's only 8 hours average actually sleeping but still can't move from my bed to eat pee or anything the whole day and my body feels like a thousand pounds but it's a huge improvement from crashing for up to a week or two like that if not regularly.
I'm gonna go to a new doctor bc it's important to me to have the diagnosis or if it isn't CFS I wanna know what it is cause it makes no sense for all of this to be just depression. Especially since I now have bipolar and only show depressive symptoms when I'm in a depressive episode, not every single day all day long when I'm happy and stable with meds.
Thankyou for more ideas on what to help, I'm also soooo dehydrated and always have been. I'm gonna try this and more protein too!!!!! THANKYOU SOMUCHHHHHH
Cutting out caffeine from my diet is by far one of the best I've ever done. I got fed-up with the headaches and the come-downs - safe to say I don't miss it. Also, turns out Vimto is caffeine free! #ShlurpleThePurple
Emma, I just want to thank you for making these videos about your CFS/ME. A while after you posted the first one my mom got ill, and we had no idea what was wrong. I remembered that I had seen your video and I recognized some of the symptoms you talked about. That was almost two years ago now, and things have been hard, shit at times even; But thanks to you and your videos we figured out what it was and she got her diagnose last November. So thank you, cause it might have taken a whole lot longer to understand otherwise ❤︎
I was diagnosed with CFS about a year ago now and nothing seems to help I nap at least four hours every afternoon and still sleep 6 hours every night and sometimes more, the other day I slept from 6pm-8am and still felt dead. My doctor won't let me try any medication because he thinks I'm too young. I'm ill all the time and my muscles are so aches and painful 24/7. I'm just so done😭
Hang in there. To be honest, there's not really any medicine which helps fatigue. Usually doctors can only medicate the pain sometimes associated with it.
My advice would be listen to your body, don't try to do more than you can - the more you push, the worse you will feel. Try to make sure you're eating well, getting vitamins, keeping hydrated, all the usual stuff you'd do to keep healthy as it can help keep things stable.
Emma Burraway thank you❤️ I know I push myself too far because I dance 1-4 hours every day and I have a part time job as well as school, I probably should quit my job I literally have no free time or time even to get school work done because I'm always sleeping when I'm not dancing or working. Thank you for your advice I really appreciate it❤️
Please sleep more than 6 hours a night! I don't know your exact age, but even adults should sleep eight hours a night, teenagers even more than that. Also don't sleep too much either, I think 10 hours is a good maximum. Otherwse, I wish you the best. I don't have CFS, but I do have suffer from insomnia sometimes pretty severely.
Meg loves your doctor doesn't sound very helpful, maybe try and go to a different doctor if you can.
Just bear in mind the more you push yourself, the worse your symptoms tend to get. Maybe try and think about priorities and figure out what you're capable of now. You don't know the future but hopefully you will improve and be able to do more 😊
I'm a few years late and came across this video while researching CFS because my partner has CFS and I watched your first video on CFS before watching this and I'm so pleased to hear the progress you've made! You seem so much happier and healthier
Idk. Self Diagnosing to the point of actually self medicating of course is not healthy, but I have a few friends that have felt like they have had to self diagnose (while waiting for the doctors to take their feelings seriously) just so they could feel more sane? Maybe it's not healthy, I'm not a professional, but in some cases, it could be helpful to those who are really desperate.
self-diagnosis often leads to people getting complacent and feeling as though they don't need to go to a doctor because they "know" what they have - it runs the risk of something more severe not being properly diagnosed, or that person not getting help/treatment for what they believe they have.
i know living in the UK with free healthcare is a total blessing - and i've never had a doctor doubt my suspicions on something - but i just cannot turn around and say to someone "if you haven't gone to a doctor, that's okay! i'm sure you have what you think you have!" i can't sit here and say to people i don't know that their self-diagnosis is accurate or valid. i don't want anyone to think i'm shaming them for self-diagnosing, but i did it for quite some time and there is always still a lingering feeling of self-doubt and uncertainty. there is nothing better than that feeling of relief when you're diagnosed and treatment is suggested.
Vloggery I think your points are valid, and as a long term thing I absolutely don't believe self diagnosing is the best route. However, when you feel like you are the only person that can take what you feel seriously, sometimes that can make you feel like you're going mad. I completely agree that a professional diagnosis is the most relieving thing a sufferer can get, but sometimes that can take a damn long time to receive (I understand you may not have experienced this) and that's in the UK where we're so blessed to have what we have, let alone other countries. When you can't access that medical, professional diagnosis, for a short time, mild self diagnosis can offer a sense of comfort for some. I appreciate your reply, i'm not used to seeing such maturity in the UA-cam comments, it's very refreshing :-)
Vloggery
I totally understand and respect your opinion but please try and understand that even people who live in the U.K. and have access to free healthcare can't always easily go to a doctor and tell them how they feel whether it's because of family (which is how it is for me) and I don't go around telling everyone that I think I have this and that! Because I know I haven't been diagnosed by a doctor and I understand that I shouldn't say I have something when it hasn't been properly diagnosed but I am waiting for the day I can go to a doctor and talk to them with confidence about how I feel and then hopefully start down the path to helping myself! I know some people can self diagnose themselves and it can lead to serious problems for them down the line but when I found out about disassociation and depersonalisation it made me feel like I wasn't nuts. As I said I didn't tell anyone I thought I had it not for a long time and even now only a few people who are close to me know that I believe I could possibly have it! I'm not saying that self diagnosis is healthy and I'm not saying it's always acceptable but I can understand that some people including myself needed to find out what was wrong with them because when it's something as obscure and something that many people don't believe is real it can be difficult to know about it at all! It's pretty damn hard going through life thinking you're an emotionless monster when really there is something possibly valid wrong with you. I know not every case is like my own and I understand that and let me tell you I'm dying to go to a doctor because I detest the way I feel but I simply don't have that option and researching my own symptoms and finding out what could be causing me to feel the way that I feel was such an unbelievable relief because I honestly was on the brink and I felt insane and I am thankful that I somewhat self diagnose myself because it gave me hope and knowledge on how to deal with how I feel.
My best friend just got diagnosed with Chronic Fatigue Syndrome and I've known you have it for a while and this seriously really helps me to try to help and just be there for him. Thank you for helping Emma I'm glad he has someone with CFS that he can look up to and see that it can hopefully get better
When you lifted up the bottle, I thought you were going to say 'now I drink pee'
I'm so happy that you're in a better place now and I 100% agree with everything that you said I've had chronic fatigue syndrome for 4 years now and I completely understand what you're saying and thank you for making these videos and talking about chronic fatigue syndrome since it's so important to be talked about because not everyone completely understands it or knows about it when its definitely something that they should, so thank you for talking about it x
I have CFS and I'd be really interested to know how you coped with it during your break up with Luke? I just got dumped by my long term boyfriend (very hurtful, said he just didn't love me any more etc.) and now my CFS is out of control. I've slept almost solidly for 3 days now. I know it's so unhealthy because I wake up feeling in the exact same emotional state I was when I fell asleep (or sadder because I've just had a dream bout him) and I'm not moving forwards. Any advice?
That's a very fair point- when I knew things were going badly, my CFS did get worse and worse. Now that the dumping has finally happened I'm at an all time low, but I do hope that at some point in the distant future everything will start to get even better than while I was in the relationship, and was experiencing that negativity on a daily basis. Thank you so much for your response and love- it actually reached me when I was in a really shit place so thank you x
Songbehindthetune It must affect people differently because I just broke up with my boyfriend (who I still love) and although I'm extremely sad my fatigue it's any worse. My fatigue gets really bad when I'm stressed tho
Songbehindthetune Hello I'm Niamh, I'm 16, an advocate and I run an organisation. My organisation is called YoungPeople ChronicIllnesses, a few spoonies share our journeys, raise awareness and tell the stories of others. This is done by capturing the good and bad times through Instagram. We have a project called Spoonie Spotlight where we share the stories of all people with chronic illness or disabilities.
Today I'm contacting you to ask if you'd share your story to help raise awareness! I personally feel like personal experiences are more powerful than facts because each persons journey with any issue is different. If you're interested please message me back or email youngpeople.chronicillnesses@gmail.com and I'll send further details. Thank you!
This makes me want to cry. I'm pretty sure I don't have CFS but I'm sure I have adrenaline fatigue caused by a really bad case of mono I got two years ago. Ever since then I have been living on 60% on my good days. I can't do workouts that push myself at all. Doing even simple things like running up stairs will drain me. It's been like this for two years since I got sick and I just have been so hopeless recently, especially since I really need to get a job. I am now terrified of working out and going out with friends to places that require a lot of walking or physical activity. But this video really gives me hope. I hope that if I take the advice you have given that I can live a somewhat normal life. Even though I've been told to do some of this stuff before, it helps that it's coming from someone who actually knows what it's like. Thank you so much for this video.
As a CFS sufferer, I just want to applaud you for making this video Emma! You're such a great person and I promise you it gets better. Anyone who's reading this who suffers from CFS, it does get better. You are an amazing person! Just keep being a great person. Sending so much love. 💖
My doctor genuinely said I had "pushy parents" which is why I'm ill. He didn't believe ME existed and it wound me up so damn much 😣
About staying hydrated - Emma, do you still drink all of those teas you talked about in a video on Boxes of Foxes? I drink lots of water but I also drink a lot of herbal and fruit teas. They make me feel really nice and relaxed and help my food go down after meals. But there are times when I will favour them over water with meals. Don't get me wrong, I still drink water! But I prefer teas. Should I cut down on them or am I okay?
Caz Tailby I love herbal teas too! I am terrible for drinking plain water though :/ oh well more tea 😂
Ayyy! Yeah tea for life :D What are some of your favourites??
Caz Tailby Tea actually dehydrates you so be careful with the amount you consume! I love tea too but my doctor advises me to trade out at least a glass of it for water a day to avoid dehydration.
I think you're okay! As long as you aren't drinking like 10 cups a day with 2 teaspoons of sugar in each one, and as long as you're not drinking ones with caffeine excessively, it's completely fine :)
Btw, what's your favourite kind of tea? Mine's peppermint :D
Mine's either the PG Tips citrus tea, chamomile with spiced apple (Twinings), or a loose-leaf one I have that's acai berry and spices!!
My dad has CFS and seeing you make a video about it has really made me happy to see that other people really do have issues with this as well and are willing to talk about it. Thank You!!
I've had ME since I was 12 (I'm
now 24). I'm severe. I'm not bedbound but I'm housebound. And though I've been through periods when I was only moderate, it's been severe for most of the 12 years I've had it. I would be interested in a video that covered the other symptoms of CFS besides the fatigue. Everyone has different symptoms but I for example have chronic pain and I get frequent headaches. I also get muscles twitches and cramps all over my body at the same time. Problems with my digestive system. Problems with my nervous system. Low immune system. I would be interested to know what symptoms you have besides the fatigue
So I just wanna say that years ago I was a big youtube fan and you and Bry were my top favorites but because of my health I stopped and I’ve slowly been getting back into watching UA-camrs and one of your videos that did always stick with me was your chronic fatigue one and how I felt it really related and I thought it was either my depression or anemia, but over the years it got worse and so did the pain, and now I’ve been diagnosed with fibromyalgia. I didn’t even know those things existed until your video and it really made me realize it wasn’t just my fault. I also have numerous mental health issues and my family and everyone still doesn’t get any of my health issues and thinks I’m overreacting or exaggerating (except the literal professionals seeing me) and it was just so validating back then and now to know that someone I looked up to could relate and I really hope I can get back to watching your videos. I used to watch every single upload on 30+ channels and it’s why I stopped, it was too much, but even now I still feel the guilt of missing so many of your videos and like I have to go back to where I left off. I figured I have to know where you are semi-recently with your chronic illness to start me off on my Emma tangent.
I am tired most of the time or well fatigued (not sure) but im not sure if its fatigue or depression which i do suffer with as well how could i tell?
I felt the same about 6 months ago, went to my GP and he told me it was down to depression! It's worth going to the doctors to check x
Yeah i did and i did go on anti depressants for a while and i didnt feel depressed but still felt tired.
I had that sort of thing as well, and was told i was anemic and had a vitamin D deficiency...
Sometimes depression can manifest itself as fatigue same w anxiety bc ur brain is working extra hard without you realizing it... it depends how and when it manifests itself
Fatigue is a symptom of a lot of illness (physical and mental) and CFS is more than just fatigue so I'd say do some research on the symptoms of CFS to see if you fit the criteria.
Thank you so much for talking about Chronic Fatigue Syndrome. Just knowing that there was a UA-camr who I watched and looked up to who also had it made me feel so much better. I related to everything you said in that video two years ago... I became a completely different person when I got sick. It was hard not to be grumpy and snappy with people because I was so exhausted. Sometimes I still am, but I'm doing a lot better, mostly thanks to pacing. I'm really glad to hear that you're doing better, too.
how did you manage to go 17 years without needing penicillin?! I'm allergic to it too but literally found out when i was 2 and have had so many infections since then as well :') did i just have an abnormal amount of infections when i was younger ahah
i don't think i was always allergic. it might have just been amoxicillin i had a reaction to
Vloggery ah okay that makes sense. I'm glad that your symptoms are doing better now though! there was a point where me& my family thought i had cf but its most likely that the symptoms were rooted in a mixture of depression and dissociation instead, which i still kinda get now but not so bad. (i saw a few drs but all were awful so ehh). that was 2.5 years ago now though and its not as controlling as it used to me (what i thought was 'brain fog' and memory problems, were most likely the dissociation and then the exhaustion from the depression). idk, i guess I'll never fully know
Allergy to penicillin can occur anytime in your life. They are notorious for that. But still very important medication!
Hello! I dunno if this is helpful but amoxicillin causes a rash in patients with glandular fever- it's not actually an allergy to penicillin. Most doctors will avoid prescribing amoxicillin in suspected glandular fever cases because of this. casereports.bmj.com/content/2015/bcr-2015-211622.extract It's good to know as patients that get this kind of rash think they're allergic but as queenofcydonia mentioned, it's good to know that you're not actually allergic as penicillin can be a lifesaving medication!
Jessie Blackery i cant take it and i haven't needed it ever
so glad to hear you're doing better :) I remember watching that video where you cried. I was actually happy for you because it seemed like such a relief for you to be able to say that you have chronic fatigue syndrome. I've struggled with various forms of mental illness, and I screamed with joy the day I got diagnosed. Hope you keep getting better! Even if it never goes away, it's good if you can have less of the really bad days :)
Just want to say that you look so fabulous in this video Xx love and hugs from Scotland 💎💕💎
I love that you are filming a video about chronic illnesses. I suffer from Bertolloti's Syndrome, a chronic pain syndrome. A side effect is chronic fatigue. I feel your pain, and I'm happy it's being spoken about. Thank you x
life with chronic fatigue is like "wanna die? drink a cup of coffee"
Hey emma, as someone who also sufferes with chronic illness i just want to say thank you for talking about your chronic issues. After 5 years of almost daily and headaches and migraines I was finally diagnosed with chronic migraine syndrome. It was such a releif to be able to say yes I have a diagnosis now what is the next step. We may not share a diaganosia but chronic conditions are no joke and Im glad I have someone to look up to who genuinely understands what it means to have an invisible illness.
I'm Emma 19 and I don't wear hats
Can't use penicillin or I'll come out in a rash
Someone in my family has CFS and this video is really good for understanding what they have to go through and what advice to give.
Great video, glad to hear you're coping better with your CFS, loving the regular content Emma!
what is squash? other than a vegetable?
It's concentrated fruit juice that you add water to to make a fruity drink :) We call it 'squash' in the UK. If you're American, think kool-aid, but healthier, and not powder. Squash is a watery, natural fruit flavoured syrup.
they call it concentrate in the US :)
colleen JAY cordial in Australia
Way to steal my thunder, Emma
super encouraging to see how well youre doing emma!! i was diagnosed with fibromyalgia about two years ago as well, it's a relative of cfs but with less fatigue and more pain. it's really helpful to see another woman dealing with this cap and recognising how hard it is to, say, get up and put your face on when you're having a bad day. thanks for this
People get mad at me if I bring up the idea of possibly having CFS because they think it's not real :))))
same, my dad said 'yeah it's caused being lazy'
called
Sophia Zucker same. i brought it up to my sleep specialist and he just kinda cringed and was like "....anyway..."
People are dicks
Thank you for making both your videos. It made me aware of my cfs and while it limits my life I wouldn't change it for anything because it made me understand things that I wouldn't without it. I don't know what caused it but I do remember that during that time I was incredibly sick and also very depressed and also doing my a levels. I really want to thank you so much. You are a godsend because you uploaded that video on my birthday and I finally found out what it was. Thank you so so much.
I'm going to be a horrible nitpicket here, but the idea that CFS and catching every cold that goes around is caused by a crappy immune system isn't correct. It's caused by an over reactive immune system which is too sensitive. It's a really massive pet peeve of mine. The immune system exists in a fine balance, and if it is tilted towards being more active then any stimuli is going to send it off and activate it, thus even a small infection that maybe a totally healthy person wouldn't get symptoms from can send the immune batcrap crazy and it will go on an all out assault when it isn't needed, causing the symptoms of infection. Most damage done to the body and the symptoms are caused by the immune system not the infection. Its a fascinating area to work in and I'm lucky I get to spend my life in a lab discovering how and why it all works.
There are multiple verified correlations between CFS and Glandular Fever. There was one interesting study in the BMJ that showed 12% of patients who had glandular fever developed CFS, furthermore, CFS was predicted largely by the severity of the acute illness rather than by demographic, psychological, or microbiological factors. So the more sick you were with Glandular Fever, the greater a chance of developing CFS. Truth is we have no idea why this is the case and we do not have a mechanism behind it yet. There are some theories but at the moment there is not enough evidence to support it, though one I find possibly the most valid is the fact that Glandular Fever can cause a huge immune response, when the immune system becomes so inflammatory it can be very difficult to turn off again. It may be that the immune system just doesn't turn off properly so is always hyper active and hence any small stimuli makes you very sick, it also means that you have some low grade chronic inflammation and one known effect of this is fatigue as it can severely mess up your energy regulation and metabolism, it also makes sense considering the strong link between severity of illness and increasing CFS incidents.
interesting piece about the immune system - thank you for that. i will say however: i had glandular fever - i got CFS. that's as far as it goes for me. i don't have the best memory in the world but i don't remember having this level of fatigue before glandular fever.
Coming from someone diagnosed with fibromyalgia thirteen years ago, it's always encouraging to see the way you've done so well in spite of having CFS. All the cool things you do and make are a real inspiration for me and I'm sure others as well!
Emma, you look so pretty in pink. :)
I have chronic fatigue and fibromaglia and I'm 22 It gets me down and I have depression and ptsd and aspersgers too, you are an inspiration to people to talk about it it needs to be more known and I know what it's like to go to the doctors and they mis diagnose you and I come out in a rash when I have penicillin too and I have a low immune too. I'm glad you are being open about it thank you Emma your fab and love your videos and your honesty 😊😊 xx
Chronic fatigue comes with depression, because other people still might think that you are healthy, but you know and feel that you're not. Yet you sure wish that you would be well! Imagine being full of energy, now imagine feeling the exact opposite of it. To me every person who has CFS and hasn't yet committed suicide is a champion, myself included.
Yes i agree , iv had it for about 10 years , although docs here in australia are not keen to say thats what is it. Everyday i want to die to escape the pain and feeling so hopeless , but i have two children that i cant leave , so i deal with feeling like the worlds biggest idiot everyday , while people give me all thier adivce on what they do when they feel tired😢
I have Ehlers Danlos Syndrome, CFS and I'm anaemic. Honestly watching these videos gives me so much hope for the future. I love hearing about people who've taken back control of their bodies. Thank you for making this
how do i avoid developing these things? I'm scared I'm on the road to getting it without knowing it / sorry for the bad english
you can't develop it over time... it's something that happens off the back of something else, like an injury or immune attack
I have CFS and one thing I can tell you is: if you feel ill with a virus or something, take the time you need to rest up and recover. One thing that made my symptoms 10x worse was not taking the time out to recover, and as soon as I felt even slightly better I'd rush to catch up on everything I missed while I was ill and it contributed to my immune system and everything else just crashing.
franchi it can come from extreme trauma as well but usually it's initiated by thing like what Emma said
ME and CFS usually affect those who work too hard and push their bodies and minds without giving themselves a break. Since living with M.E I am constantly telling people to take rests when they feel tired and stressed - you have l listen to your body - as I don't want anyone to live like I do.
Not everybody has sudden onset, it can develop as slowly declining health over months or years. Unless you have a bad infection, a lot of stress, are malnourished e.g. from an eating disorder past, digestive problem or chronic overtraining it's unlikely it will happen to you though! Eat well, exercise smart and listen to your body and you're all good!
It's so nice to see someone talk about this. Sometimes you can feel like you're the only one with it. I can tell most people don't take me seriously when I talk about it. This video makes me feel less alone.
How did you not get ALL the urinary tract infections by peeing only twice a day? O.o especially after sexy times.
... i did. i got many. that's why i ended up in hospital in 2015 when a UTI developed into a kidney infection and doctors were worried i'd turn septic.
Hells balls girl! - the human body is a pile o crap....if it were a car it would have been recalled for potentially fatal design flaw's. I demand a refund!....glad you are coping better with CFS and are now drinking properly!
Enki Aswad oh its actually possible. I have no infections. I only pee like once or twice a day, but then a lot. I dont pee at certain moments. I even had on hiking camp I didnt pee for like 38 hours. because I couldny all day, and didnt need to pee at one camping.
my pee is healthy colour, I drink a lot of water. just also a really large bladder.
i've weight myself before and after peeing once. I was like a little over a kg lighter. (so assuming the density of water and the waste products) so like little under a liter.
Dutchik Granted, I never had an infection before I started having sex, no matter how little I was drinking. I don't know why I have one like every months if I'm not taking antibiotics, but I have bigger problems at the moment (like the possibility of developing MS... life is great like that ^^")
Dutchik I went to a urologist for that problem, it's standard prophylaxis. I know it's not good, but I only take a low dose after and eventually I'll stop and try something more natural. I have tried ALL the tricks before nothing kept me from ending up peeing blood and crying in an emergency room... it's rare but some women just have that bad luck I guess.
I have a friend with chronic fatigue syndrome and it does affect your school life a lot. She missed a year between GCSE and A levels because she wouldn't have been able to do school then, and now we're in A levels and she does half days and she naps at lunch and such. But she's a Smart so she's not failing- although I can easily see how one could fall behind with work due to missing a lot of the day.
Happily, my friend has a lot of support and she is good at school, and I see her eat healthily and stay hydrated so I can second-hand vouch for a good diet to help CFS! I think you're doing great Emma, and anyone with cfs, you're goddamn resilient, I admire you!
Did you try changing your diet?
Go gluten free and Dairy Free . it might help.
I've had severe cfs for 15 years, and while nothing seems to help after innumerable treatments, it's encouraging to see someone else improve. Thanks for talking about it!
oh oh i didn't realise that peeing twice a day was bad?? should i drink more?? is this why i can't think!? oh my god wow
i actually sometimes only pee once??? and it's really really yellow oh oh this is thank you for telling me thank you so much!
katie lindsay oh my gosh girl drink!!
As someone who has fibromyalgia and CFS I truly have so respect for how you are so strong and how you don't let it stop you from doing what you want. I also suffered from not having enough water so I started drinking more and its shocking how much difference it makes. Aspartame is also a massive trigger for me which is found in nearly all energy drinks. Thank you for talking about CFS, it really helps to know I'm not alone and I'm glad to hear you're doing better! ^w^
I remember when you were known for drinking loasd of Coca Cola! :p
I have cfs after huge amounts of stress and a throat infection and haven’t really felt okay mentally and physically since about October, and this video honestly made me cry. it made me feel more comfortable about who i am and what my body is doing. thank you.
"CFS is in your head", do you know what else is in your head, Mental Health disorders such as depression, anxiety, schizophrenia etc, gender dysphoria, other really shit things, if CFS is in your head, sure it's not as bad as what I've just mentioned but it's as valid
The difference is that doctors who believe it is a psychological problem will try and treat it like a psychological problem when it isn't one. It can be very demoralising to have a physical condition and for medical professionals to say you just need therapy. Imagine breaking your leg and your doctor telling you its in your head, and how frustrating that would be. Just like in the past when doctors thought mental disorders were caused by your spleen or your blood - if you don't know what causes something, you can't treat it very well!
That's not to put down or dismiss mental disorders such as those you've mentioned. But it is important that these conditions are recognised for what they are or they won't be treated properly.
Yes there is a definite connection between CFS and mental health conditions, for sure. I also have CFS and it did cause me significant anxiety (especially when I wasn't sure what was wrong with me). I was lucky to find an excellent doctor who took my symptoms seriously and was able to see that although CFS and mental health conditions inform each other (constant anxiety can sap energy, and low energy can cause anxiety, for instance), they were not the same thing and need treating differently.
I'm so sorry to hear that your doctor doesn't take CFS seriously. Unfortunately it is an under researched and under funded area.
did u really just say it's not as bad...hey wanna spend a day in my shoes? don't compare illnesses.
Sohns Teeth I apologise
GMitch [formally SageOfMuzzyness] i appreciate the apology.
I also have diagnosed CFS after a bad bout of glandular fever 3 1/2 years ago, off to the Drs again this week to try and get some help from a different doctor. It's actually so tiring being tired all the time, so good to see an update video where you're managing your symptoms better :)
Hi Emma. This video is really interesting. My sister and a close family friend both suffer with ME/CFS and they go through the same things you go through as described in the video. ME/CFS is actually caused by a build up of toxins in the body that the body is unable to flush out. There is, however, a cure which is flushing the toxins out of the body. I don't know how to do this but I would suggest that you get in touch with Dr Raymond Perrin, the UK's leading expert in ME/CFS, if you want to find out more. Hope this helps people. Xxx
Ive been seeing Raymond for the past 4 months after having cfs for 5 years and im starting to see improvements x
“A fast food mc-restaurant”! Brilliant! Also thank you very much for this video,I’ve struggled with chronic fatigue syndrome for around 18 months - 2 years. It’s so difficult to know what to do when or how much to do in the day. I have days when I just give in to the condition and days when I think I can do anything and everything. I am working and enjoying work but I’m very tired at work.
if you think you have the syndrome, here is a number of things that can contribute to fatigue (not to disprove you or anything, if you think you have it, see a doctor, but these are just some examples):
- fatigue can be caused by pretty much everything, especially if you are growing (puberty-wise) - and up until you stop growing, your hormones are raging and your body is changing at an alarming speed, so therefore, you are bound to be tired a lot of the time. if you think about how much your body is changing it really puts it into perspective.
- mental health can also affect physical health. fatigue can be a symptom of things like depression and anxiety, as your mind is constantly racing or your mind is constantly flat. its important to think about whether you are actually happy or not. happiness releases energy giving endorphins, sadness doesn't. look after your mind and your heart!
- like emma said, your diet! do you actually eat vegetables? do you get any nutrients at all? if you live on instant noodles and diet coke, then you must realise that there is no way your body can do anything but struggle to even keep you alive. ever since humans came into existence, we have always relied on plant based foods to feed us, not just meat or whatever. take care of yourself! drink fruit juice. fruit pretty much removes your need to eat something sweet, and its good for you too! just look after your teeth
so before self diagnosing yourself (like emma said, its unhealthy), evaluate your body and your mind and try these things out! if you genuinely think you have it, see a doctor and pester them until they help you!
vegetables! greens! alkaline foods! protein!!! water!!!! my diet was TRASH in 2015 like i was the worst vegan in the world i would cram smoothies for breakfast and then eat... like crisps and vegan junk food all day. no goodness whatsoever after like 11am!
Vloggery right! vegan is all nice and good and whatever but you seriously need to check what you're actually eating cause it's mostly fake shit :d no offence. also smoothies are gross I really can't deal with them! Drinking sloppy spinach and bananas? No thanks u
@ur favourite piglet
Vegan food isn't mostly fake stuff. It's fruit, veggies, beans, and grains. There's an abundance of whole, plant-based foods available to us. How is a meal of brown rice, black beans, broccoli and spinach fake? There are ways to be a healthy vegan and ways to be an unhealthy one, just like there are ways to be a healthy meat-eater and ways to be an unhealthy one.
Vicky M okay chill i meant people choose to eat a lot of substitute foods/vegan friendly rather than fresh things like fruit and veg, for example Emma talked about how she ate crisps all day rather than healthy stuff. Of course proper meals aren't fake stuff fam
Glad to hear you're doing so much better! I've had ME/CFS for 13 years. I hate to be one of the masses saying "have you tried....?" But I think I should tell you that 2 years ago I also got diagnosed with POTS. (Postural Orthostatic Tachycardia Syndrome) If you look it up on the NHS website it says 1/3 people with CFS have POTS. Which is nuts. I can't believe I had CFS for 11 years without finding that out. Anyway, I thought I should mention it as some of the things you talk about like drinking lots of water and no caffeine are things recommended for POTS and in your first video you talk about washing up and cooking (I.e. standing still activities) being the most exhausting. All these are flags for POTS to me. If you look into it you might be able to find you can manage your energy even better than you can now. There's no miracle cure for POTS either but it is useful to know a bit more about what's going on in my body I find. I've made some videos on this. I've tried a couple of POTS medications but they both made me feel awful.
I hope this comment is useful and not annoying!
Ps. I remember watching your I'm so lazy video years and years ago and thinking I relate to every word of this so much, if only I could say it is because I am lazy, that would be so much better than having ME. You are not lazy Emma. Thanks for making awesome videos.
Aw Emma I'm so happy you're feeling better and found what you need to do to help combat your fatigue I remember the old video and you've come so far ❤️
2 Years on here too- I commented on your original video saying I felt the same and I hoped I'd get a diagnosis (something like that)
I have no CFS diagnosis, but I am getting closer to any diagnosis. It's looking to be auto immune, which explains the fatigue. These last couple of years seeing you doing your thing on youtube has helped keep me going to achieve what I want to achieve- you're doing it with your CFS, so I can do it with my... whatever the fuck I have!! I want to be a professional portrait artist. Well, I am a professional portrait artist, but I want to be able to live off it.
AAAaaany way. Thank you Emma for being you and good on you for pushing on through, even though it's difficult at times.
I'm glad you're coping better lately, Emma. Sending you the best :) Thanks for educating us
I was diagnosed with fibromyalgia about 7 months ago and having a diagnoses / name for what you're going through helps so much. I haven't been good at managing it this last month but once you can set a good routine, diet and active lifestyle it's loads of change and the insomnia pain and any other symptoms calm down so much. Most days seem impossible to get through but it can happen! Thanks for sharing
I'm in the exact same position as you, Emma. I had glandular fever when I was 14, and I developed chronic fatigue after that. I'm 19 now, and I'm never ok for a long period of time. The affect it has on your body is crazy, and I don't know if you have experienced this - but the stigma around it is awful. People don't understand that there isn't a cure, it's not something where you can accumulate health and get better. It's a real test of time. I hope that one day I can get even better than I am now, but if that day doesn't come, then I'm trying to make my peace with that. Loads of love to anyone else going through this