"If you're well enough to go to work, why can't you come to my party?" "Because I'll pass out in the potato salad, Janet." 🤣🏆🙌 You are my shero, Jessica!
"I'm panicking about how I'm going to look after my children that I don't yet have, while still living with an illness that I thought would get better". That is just a summary of my life at the moment.
When I was diagnosed, my doctor told me that I needed to start swimming three times a week. After one hour of swimming, I was bedbound for days and couldn't face going back. When I saw him again he said that if I wasn't going to even try to get better with exercise, then I clearly wasn't interested in getting better. I wonder how he feels now that the evidence shows that exercise is one of the worst things you can do. I gave up on doctors for ME, (another told me I was just going to feel tired for a while and maybe take a nap) and I just figured out how to do my life on my own. The medical community has been helpful with my other diagnosis, but for ME, they seem to have nothing to offer. Hugs to all those suffering.
I'm sorry that was your experience and that it so often happens that way. It took 6 years for me to be diagnosed because noone would listen and by then I was already in the 'moderate' mostly housebound stage. And the supposed experts recommended GET and CBT. Thank goodness I already knew how damaging GET is so I refused that part. I was already seeing a therapist (for mental health issues) but CBT doesn't cure M.E. It only helps people cope with the depression that inevitably follows. It's all so backward! I'm now in the severe category where I'm mostly bedbound. I've been ill a total of 13 years now. Not exactly how I thought I'd be spending my 30s! We need funding and medical professionals that actually understand us.
I watched with tears in my eyes. I was remembering back 25 year when I had a newborn baby, and a husband with ME/Chronic Fatigue. Before ME/CF, he had been a canoeist, hillwalker, surfer studying for a PhD. At his worst, when our baby was 6 weeks old, he could only manage to walk to the loo and back, and even then he had to rest before making the journey to bed. There had been a six month decline before the little one was born, and he was ill for a further eight months. Thankfully, the only memories he has of that time involve our daughter. He can't remember how ill he was, only that he fell madly in love with a tiny infant. Twenty five years have passed. He did get better, and was able to return to hillwalking, and PhD-ing. He was, and is, a very involved father, and a very loving husband. He's also does mountain rescue, and is part of a team of volunteers that get called out for missing person hunts. The difference between then and now is huge. ME/CF is real. It is debilitating, and it's so important that people who have it are believed, and treated with fairness and compassion.
I am so happy to read that your husband now is in good health ❤ It is crucial for those of us trying to recover to be treated with kindness, compassion and respect. Much love to you and your family.
I'm going to show this to my husband. We are exploring a diagnosis of CFS/ ME and it's really scary for us. He has good days and then some days he's is barely there if that makes sense 😔 but looking at this, there looks to be light in the future. What did he/ you do to help him through this time? Kudos to you for supporting him through this hard time with a young baby! That's so amazing! Again thanks for posting this. It's really helped me today. X
....I want to cry and call my doctor and say "look can we consider this as a possible explanation instead of retesting my blood again and again and again for the same things that are never going to show up"
Drs kinda suck at times. I keep having blood tests and have had genetic tests which show a big fat 0, funnily the hypermobility or heds gene has yet to be found so genetic and blood tests wont help. Them listening and doing research however might help haha Hope they listen to you soon x
@@abbiebann2440 they should but I had to fight to get what I did, I'm now 31 and trying to get to the bottom of what has been plaguing me since I was a child.
@@abbiebann2440 I think what I'm.meaming is that repeated testing that shows nothing everytime needs to be looked at and them realise just because they want something to show up doesn't mean it will
This was me with my Lyme diagnosis. Over a year doing the same blood tests over and over. Then I went to a private clinic, got tested through them, came up positive for borrelia, bartonella, and babesia which required a specific test just for them since they don't do anything to show up on normal blood work except maybe some inflammation markers. Which I was later told showed up but it was borderline okay so I shouldn't be surprised it wasn't followed up on.
I can blame me not being a native English speaker on that inability to pronounce this illness but it's not like I can pronounce it any better in the German way.
I've watched several of Jessica's videos and often thought I have a lot of the symptoms of her condition myalgic encephalomyelitis. Then in this video she said it's called chronic fatigue syndrome in the U.S. and I was like, oh! I think I do have that condition, then. (None of my doctors have ever diagnosed me with it because my fatigue is sporadic and I have other medical conditions that cause fatigue too, but I think I might have cfs).
@@xzonia1 Mine was sporadic for most of my life and then I slid into disability. Many have what appears to be sudden onset and a good number have long-term onset. I wish you the best. You might want to see about getting on a waiting list to see one of the few specialists in the country if getting the diagnosis will help you in any way.
I agree! as a med student this video has given me a whole new understanding of ME, a condition which in the past I have struggled to fully grasp the effects of. Jessica should really consider looking into volunteering as a professional patient to go into med schools to educate on the patient perspective of ME as I'm sure so many others could benefit from hearing info like this! :)
They are starting to ask what have you read about.. and I also use the term when they come after me with dr google isn't a great idea. I also respond drs only study the condition so don't you dare confuse your degree with my lived experience. It's got me most extraordinary results. As well as saying when they say that there is nothing we can do. I ask to see that they where righting it in the notes refusing to treat x condition or refere on. It really does help to make the medical professionals accountable. I have a great wrap around team now.
M.E. is just called CFS where I am so people constantly say "oh you're just TIRED? I'M TIRED TOO" like no dude I'm freaking exhausted from the most basic things, then I can't sleep, and when I do sleep I may as well not have
Can you try using the ME name? I know people with It. They are often belittled because of the name. ( i find because woman have it more, it's more bias towards it) . I have Fibromyalgia. I'm often not taken seriously as being disabled. I also have complex ptsd. Most people don't know that non- soldiers can have it. Mine is from an extremely traumatic early childhood. Unless I go into detail with people who know nothing about mental illness or physical illness ( and how they connect), they often do not believe I'm disabled. But once I go into detail about my trauma ( which I should not have to do to get validation), they often understand why I am sick.
Yes.... tired.... not exhausted to the point of wanting to puke or being unable to get out of bed..... 😕 I also find it almost insulting when I'm so 'tired' that I cant function yet I see every hour through the night. Then if i do sleep my body and mind is like 'haha sucker tricked you'
my mum has M.E and our family ALWAYS gives the “you’re not ill enough” line 🙄 this video was great for me to know more about my mums illness, as i have to help her with it sometimes, so thank you very much :)))
Sending love to you and your mom! I can so relate to other people saying those things. Thank you so much for helping your mom - it means the world to us when we have people help us and try their best to learn and understand. X
When I was diagnosed with M.E. I was fourteen and literally just told this is what you have, there is no cure, get on with it. It's taken seventeen years and countless hours on the internet finding other who have had this and finding out what the frick my body is doing. So many of my symptoms I didn't know were part of this thing. So thank you Chronic Community for giving me some answers and a feeling of not being alone.
Your experience sounds just like mine. I was 14 too and told to just get on with it, and have done ever since no matter how many times I go back to new Dr's. I've I'd been given proper advice from the start I wouldn't be anything like as sick as I am 20+ years later. So thankful for the internet and chronic illness community too. How I wish it had all been there years ago!
I have 'moderate' ME and I moved three weeks ago, but I spent the first week lying down in a sea of boxes. It's only now that i'm feeling excited (finally on the ground floor - no exhausting stairs!!) and settled, but it was worth it! Hope yours goes well! 😍😍 Incidentally I was diagnosed at university and was referred to the Bath adult fatigue place and every time someone brought up the PACE trial I swear they would shoot flaming daggers from their eyes. My doctor at the time told me to do that and the nice people at the fatigue place sent him an incredibly passive-aggressive email back telling him they'd advised me never to see him again 😂 x
Gigglypeach, STAIRS ARE EVIL My school has an elevator as they are required by law to make the school easy to enter but *they never turned the elevator on* so I cannot use it... thanks school
@@user-ly3pj1yz4l Oh dear, your idiot school! Bless you, hope they sort themselves out soon! My university was the same, I had to get a very kind, tall and strong friend to literally carry me up the stairs sometimes 🤦♀️x
I was misdiagnosed CFS/ME for 7 years. Well actually undiagnosed for years and then misdiagnosed with CFS/ME. EVERYONE who has this needs to get tested for Lyme disease by a Lyme literate medical doctor. I am sorry for spamming so many of you in the comments with this exact comment. I don't want to offend anyone who has CFS/ME. I was tested for Lyme disease when I first started becoming fatigued and of course, it came back negative. I was also put on antibiotics about 13 times over 2 years because of the frequent infections I was getting; so I thought well if I had Lyme I don't anymore since I was on antibiotics so many times. But the Lyme had already been in my system for years at that point and unless diagnosed early antibiotics aren't going to do a damn thing. I was part of the CFS/ME community for 7 years and I understand how irritating it is that someone on the internet thinks they know what's wrong with you when you know just how many tests you've had done. But I think why ME/CFS isn't getting conclusive results when doing studies is because there are so many of us in this grouping who are misdiagnosed! Also, you know, the lack of studies is to blame. So if you have looked into the things I am mentioning here please forgive me, I just want so badly for CFS/ME and Lyme to have a cure and if we are mixing up the diagnosis then it's going to make it even harder for us to get one. Long story short the typical Lyme test tests for the antibodies that fight against the Lyme bacteria (borrelia burgdoferi) not actually testing for borrelia burgdoferi. There is a place called Ingenix that does a better version of this test but even with that test, I was not CDC recognized as having Lyme. You must have a certain number of markers that come up as positive and I had all of the markers I needed minus one that was not even negative but was indeterminate. So in a sense, I had 4.5/5 positive markers for Lyme. To a Lyme Literate MD (LLMD) that is a positive result as long as you have the symptoms of Lyme. Which are pretty much the same as the symptoms of ME/CFS. To a typical doctor, they just come back and say "It was negative.. again. You know the mind is a powerful thing. Let's try CBT." Get your CD57 tested. Much like people with Aids would talk about having a low CD4, oftentimes people with Lyme have a low CD57. My primary did this test for me so if you can convince someone to do it for you, that is an easier test to do first. If it's low then continue down the LLMD path. If you can find someone who does blood microscopies do one. Mine was filled with spirochetes. This is also another obvious sign you have Lyme, you know, or syphilis. The only two bacteria shaped like this. Look into mold exposure as well. I don't have this but it is something my LLMD tested me for as it has similar symptoms to Lyme and CFS/ME. I wish I could expand on this topic but the brain fog is kicking in. So please if you have the money to do so, get this tested. Look into chronic Lyme disease. Look into late-stage Lyme disease. Look into mold exposure. Watch afflicted on Netflix. I was convinced that I had been tested for everything and I was very much mistaken. If you want to talk more please feel free to reply back to this and I'll give you my email.
I have fibromyalgia and complex ptsd. My old Dr knew I had ptsd. But continued to insinuate all my medical issues were ' hyprocondriacte'. It took him 15 years to admit that my self diagnosis of Fibromyalgia was accurate. Thanks. -_- My new Dr is under 40. And not a misogynist. They were actually trained about Fibro. Which is in the arthritis category. I have many of the things that come with it. IBS, asthma, allergy's, interstitial cystitis, crouch depression, anxiety etc. I'm glad new Dr's are trained about trauma, ( my complex ptsd is from childhood abuse) , and how it effects your health.
An ex-girlfriend of mine has both fibro and complex PTSD also from her childhood, as well as several other diagnoses. It took her a very long time to get recognition from doctors too. I'm glad you're getting proper treatment now, chronic pain is horrible to live with but PTSD can be worse. Having to deal with both is not a good hand to be dealt. Makes me feel lucky to only have had moderate M.E. in my time. Good luck to you.
Another fibromyalgia sufferer, I went through an initial diagnosis of CFS, then fibromyalgia as my sister has arthritis and I was experiencing widespread pain along with brain fog and fatigue. I'm now at the point where I tell my doctor new symptoms and she just shrugs it off. Extremities going numb for no reason? You must've been leaning on it. Sensitive to dairy? You must be imagining it. I've kind of hit a wall in my treatment where my doctor hit fibromyalgia and anything new past that doesn't matter
There are some illnesses that cause isolation, and ME is very high on that list. You are not alone, neither is Layla and Sapphire. We see you, and we are glad you are here.
"Because I'll pass out in the potato salad Janet" This is honestly so relatable! I can't tell you how many times in the last few years I've had to cancel with friends due to my illnesses or I look ok that day but I have so little that I can't leave the house, not even brush my teeth because I have to force any & ALL energy just to make it work each day
It’s so much more than just “being tired” as people say. it’s your entire BODY being exhausted, but you can’t sleep. you lay in bed and your brain just STOPS working. It feels like you’re in a fog and somehow you’re genuinely unable to speak because it’s too hard to form words, or even think because you’re so confused about everything around you. because your brain has just quite literally shut down. and so you just la there and cry cuz.. well else is there to do. and imagine all of this happens JUST from spending your regular old day working at your office job. the smallest tasks are the hardest. THAT is fatigue.
I totally have the issue with be too tired to talk. I’ll sometimes start a sentence and then a few words in my brain just stops and I don’t have the energy or congnition to finish so I just wave my hands like “forget it” and walk away.
@@librocurious me tooooooo! It's like not only can I not think of how to finish the sentence that I started, it's also really physically tiring to talk, like it's tiring to breathe in enough to be able to talk.
Clearly defined thing-a-mabobs get better funding than unknown thing-a-magiggies. And...the more scientific testing the higher the expected income from a medical breakthrough and marketing of the next , best, wonderdrug. Yay, capitalism!
Thank you so much for this. Moderate/severe MEcfs person here. As awful as all the stupid symptoms are, sometimes dealing with the controversies & the lack of understanding around MEcfs is the thing that gets to me most. As if I deliberately picked getting ill with something that folk can't even agree on the name of, never mind the cause. Anything that helps to chip away at the MEcfs fog is a Good Thing & this video is a Very Good Thing. (Away to lie down now as thinking & typing & words & my brain is starting to fizz 👍)
I was misdiagnosed CFS/ME for 7 years. Well actually undiagnosed for years and then misdiagnosed with CFS/ME. EVERYONE who has this needs to get tested for Lyme disease by a Lyme literate medical doctor. I am sorry for spamming so many of you in the comments with this exact comment. I don't want to offend anyone who has CFS/ME. I was tested for Lyme disease when I first started becoming fatigued and of course, it came back negative. I was also put on antibiotics about 13 times over 2 years because of the frequent infections I was getting; so I thought well if I had Lyme I don't anymore since I was on antibiotics so many times. But the Lyme had already been in my system for years at that point and unless diagnosed early antibiotics aren't going to do a damn thing. I was part of the CFS/ME community for 7 years and I understand how irritating it is that someone on the internet thinks they know what's wrong with you when you know just how many tests you've had done. But I think why ME/CFS isn't getting conclusive results when doing studies is because there are so many of us in this grouping who are misdiagnosed! Also, you know, the lack of studies is to blame. So if you have looked into the things I am mentioning here please forgive me, I just want so badly for CFS/ME and Lyme to have a cure and if we are mixing up the diagnosis then it's going to make it even harder for us to get one. Long story short the typical Lyme test tests for the antibodies that fight against the Lyme bacteria (borrelia burgdoferi) not actually testing for borrelia burgdoferi. There is a place called Ingenix that does a better version of this test but even with that test, I was not CDC recognized as having Lyme. You must have a certain number of markers that come up as positive and I had all of the markers I needed minus one that was not even negative but was indeterminate. So in a sense, I had 4.5/5 positive markers for Lyme. To a Lyme Literate MD (LLMD) that is a positive result as long as you have the symptoms of Lyme. Which are pretty much the same as the symptoms of ME/CFS. To a typical doctor, they just come back and say "It was negative.. again. You know the mind is a powerful thing. Let's try CBT." Get your CD57 tested. Much like people with Aids would talk about having a low CD4, oftentimes people with Lyme have a low CD57. My primary did this test for me so if you can convince someone to do it for you, that is an easier test to do first. If it's low then continue down the LLMD path. If you can find someone who does blood microscopies do one. Mine was filled with spirochetes. This is also another obvious sign you have Lyme, you know, or syphilis. The only two bacteria shaped like this. Look into mold exposure as well. I don't have this but it is something my LLMD tested me for as it has similar symptoms to Lyme and CFS/ME. I wish I could expand on this topic but the brain fog is kicking in. So please if you have the money to do so, get this tested. Look into chronic Lyme disease. Look into late-stage Lyme disease. Look into mold exposure. Watch afflicted on Netflix. I was convinced that I had been tested for everything and I was very much mistaken. If you want to talk more please feel free to reply back to this and I'll give you my email.
Between POTs and ME taking a shower and brushing my teeth is basically an assisted (because it's horribly unsafe to do alone) marathon. There's a rest period, hydration, sometimes sweating or blacking out.
I was once there and my brain was so incapacitated I'd never have thought of baby wipes and disposable toothbrushes so I could do some self care in bed. And my partner--one who fled--was so not invested in helping, that that person's brain also didn't come up with ideas on how I might meet basic needs like that. Given that you have POTS, it's likely you have low BP, if you are not already consuming salt water or electrolytes, please have your electrolytes tested and read up on this. My very severe symptoms improved over time (to severe to moderate, waxing and waning) with the addition of salt water (I can't use the electrolytes because my body retains potassium--genetic issue--and that would be problematic). Salt in water seems to be the best way to get it; some do better with saline IV a couple times a week (we have blood volume issues), but not all can get that and in the UK it's basically impossible. If you already know this, perhaps someone who doesn't will read this and research on the topic for their own benefit.
Same. I don't have a diagnosis for anything but I understand you. I sometimes (a lot) get this feeling were it is like EVERY cell in my body weighs ten pounds each.
I liken it to feeling like my cells have all been filled with lead. It’s not just my organs, it’s all my soft tissues. Alpha Lipoic Acid has really helped though, 600mg 2x/day with food on the advice of a new(ish) doctor. It’s still there but dramatically better since starting it 6 month ago. I commented elsewhere but I also have ME & EDS as well as severe autoimmune issues from a near fatal bout of adult chickenpox (varicella in the UK) in my 20s; which was what triggered the ME in the first place 9 months after being hospitalized for the outbreak & resulting pneumonia from having them internally as well as over every square cm externally. It took nearly a decade to piece all that together & I didn’t even get the EDS diagnosis until this last winter. They wrote the hypermobility including full hip displaysia & severe tachycardia off basically as 🤷🏻♀️. Very first thing my new doctor said after reading my history was “has anyone ever examined or tested you for Ehlers Danlos?” Nope...
You’re the best, Jessica. Thank you for doing what you do. My wife suffers from ME and EDS and we both find comfort in your videos and your continued effort to bring chronic illness awareness to the masses. Thank you again!
I have fibromyalgia, which is so similar to M.E / CFS, some people have it in conjunction with each other. We get told, new symptoms should always be checked out, to then be told, by the doctor, oh its just the fibromyalgia, and without doing any tests or anything, everything gets put down to the condition already existing and so many people don't bother going to the gp anymore because we just assume it's the fibro/M.E (other chronic illnessess) and there's been many cases where people have got seriously ill and/or sadly died.
It’s so discouraging that there isn’t enough research on ME/CFS, despite there being a LOT of people who have this disease. I will be sharing this video so there can be more awareness of this debilitating disease. Good job on creating awareness for ME! 😃
Thank you so much for making this video. I've been thinking I should probably learn more about ME/CFS lately since I've had it for 3 1/2 years now. It was kind of cathartic to be checking off a lot of the symptoms as oh yep have that. That magnet analogy was so true too! I'm so grateful for all the information you provided and clearly presented and explained and am already planning to send this video to friends to explain what's 'wrong with ME' in the future. The emotion in your voice at the end when talking about having to stifle joy in order to conserve energy, I feel that. Thank you for including that. I think that was extremely valuable to see how this kind of fatigue plays into every part of our lives and also I do it to and am grateful to see someone else talking about it. I love watching you and Claudia but this has soared to the top of my list as my favourite video of yours! I can't say thank you enough.
I was misdiagnosed CFS/ME for 7 years. Well actually undiagnosed for years and then misdiagnosed with CFS/ME. EVERYONE who has this needs to get tested for Lyme disease by a Lyme literate medical doctor. I am sorry for spamming so many of you in the comments with this exact comment. I don't want to offend anyone who has CFS/ME. I was tested for Lyme disease when I first started becoming fatigued and of course, it came back negative. I was also put on antibiotics about 13 times over 2 years because of the frequent infections I was getting; so I thought well if I had Lyme I don't anymore since I was on antibiotics so many times. But the Lyme had already been in my system for years at that point and unless diagnosed early antibiotics aren't going to do a damn thing. I was part of the CFS/ME community for 7 years and I understand how irritating it is that someone on the internet thinks they know what's wrong with you when you know just how many tests you've had done. But I think why ME/CFS isn't getting conclusive results when doing studies is because there are so many of us in this grouping who are misdiagnosed! Also, you know, the lack of studies is to blame. So if you have looked into the things I am mentioning here please forgive me, I just want so badly for CFS/ME and Lyme to have a cure and if we are mixing up the diagnosis then it's going to make it even harder for us to get one. Long story short the typical Lyme test tests for the antibodies that fight against the Lyme bacteria (borrelia burgdoferi) not actually testing for borrelia burgdoferi. There is a place called Ingenix that does a better version of this test but even with that test, I was not CDC recognized as having Lyme. You must have a certain number of markers that come up as positive and I had all of the markers I needed minus one that was not even negative but was indeterminate. So in a sense, I had 4.5/5 positive markers for Lyme. To a Lyme Literate MD (LLMD) that is a positive result as long as you have the symptoms of Lyme. Which are pretty much the same as the symptoms of ME/CFS. To a typical doctor, they just come back and say "It was negative.. again. You know the mind is a powerful thing. Let's try CBT." Get your CD57 tested. Much like people with Aids would talk about having a low CD4, oftentimes people with Lyme have a low CD57. My primary did this test for me so if you can convince someone to do it for you, that is an easier test to do first. If it's low then continue down the LLMD path. If you can find someone who does blood microscopies do one. Mine was filled with spirochetes. This is also another obvious sign you have Lyme, you know, or syphilis. The only two bacteria shaped like this. Look into mold exposure as well. I don't have this but it is something my LLMD tested me for as it has similar symptoms to Lyme and CFS/ME. I wish I could expand on this topic but the brain fog is kicking in. So please if you have the money to do so, get this tested. Look into chronic Lyme disease. Look into late-stage Lyme disease. Look into mold exposure. Watch afflicted on Netflix. I was convinced that I had been tested for everything and I was very much mistaken. If you want to talk more please feel free to reply back to this and I'll give you my email.
This is me. I had glandular fever 10 years ago, that lasted for 3 years and I have never been the same since. A lot of the symptoms here are me. Drs have ignored my symptoms. I am going to go to my dr and ask them to consider ME. Thank you!
I don't know if I have ME, but I do have some of the symptoms (which might be caused by several other conditions). Anyone who does have ME, I understand and you are valid
Jenny,i just wanted to say thankyou for not judging us.To live this life is pure hell.It's very common for M.E to overlap with other illness's etc.I truly hope that you manage to find the answers to your own health issues,never give up and never stop trying.I wish you all the best in the future
Primary biliary cholangitis can mimic ME--similar process in a part of the body but for different reasons, and PBC can be treated and managed. PBC can make someone appear to have severe ME. Most people are not tested for this to have it ruled out. Just thought you should know.
Your victory rolls look GORGEOUS. You should obviously never pass out in any potato salad when it could ruin the effort you spend perfecting the hair on your poor tired head.
this is so important! when people see the "mild" before ME they take it as "not ill" i am ill. I need help sometimes and sometimes I am too tired to work or go to school.
Ditto!! I have mild to moderate and it is so frustrating sometimes!! I've been so lucky that I've been able to go to a school for special needs so I've been believed the last 5 years but I've had some bad experiences too
Best TH-cam video I’ve seen on ME. I’m a moderate to severe sufferer and have been ill since I’m 16. I’m now 33. I feel like only other ME sufferers will ever get how debilitating is. I used to believe that by 33 years old I’d have a partner, children, my own home, my own car, a job... But I have none of those things. ME robbed all those opportunities from me. And I have no idea if I will ever get my life back. But we do the best we can with what we have. I applaud you for making such great videos. I’ve got into bird watching and Buddhism. We do what we can, but hope for more xx
I have chronic fatigue as a symptom of EDS. My best friend has severe ME. The way she experiences her fatigue is fundamentally different to mine, but I agree with you that that doesn't mean that there is a true binary between ME and CF - it just means that we fall on different ends of a chronic-fatigue spectrum in terms of how we experience our fatigue. I don't really experience PEM, or certainly not the way she does; while a lot of exertion CAN trigger an EDS flare in me that will knock me out for weeks or months, it's not something that happens every time, and in general my waves of fatigue are shorter and usually last for stretches I can measure in hours or days or weeks before I get back to baseline. However, for my friend with severe ME, one single show (we're opera singers) can make her truly non-functional for up to a year afterward, and every single, TINY amount of exertion WILL come back to hit her later in the form of fatigue, without exception. Thank you for making this huge, complicated, and truly stigmatized topic so approachable and easy to digest - and for being so clear that while the way people experience fatigue is widely variable, and not just along a spectrum of mild-to-severe, but also in the patients' experience of other symptoms.
Yes you should be kinder to yourself today and tomorrow too. After then you can begin to make your new house a home. No sense moving into a new house you won’t be able to enjoy for weeks. Please allow others to move for you, even ask them to. Go to your new house and make them some lemonade. They will appreciate that much more than seeing you struggle about the old house. Let them worry about the old house.
Wow that last part really got to me. The isolation with chronic illness is real, man. Teared up a bit but thank you for talking about such important issues and I love your videos very much. Good luck on moving!
I’m in the moderate range. I often say that I feel like my mind is a chalkboard. And while I’m talking or doing anything, it’s like someone has wiped a section off the board....that’s it ...it’s completely gone. Bloody frustrating. Thank you for this video. ❤️
Thank you so much for your encouraging words at the end of this video. I don't struggle with any physical chronic illness (that I know of), but my depression often makes me feel like I'm lagging behind on everything and not able to live as full a life as other people. It was such a relief to hear someone say "You're not alone, you'll always have a place in the world, and whatever you can do is enough."
I'm glad you made this video - despite the fact that I haven't been diagnosed with it, I do have many of the symptoms and keep getting reccomended to other doctors for specific symptoms and they don't find anything wrong...its left me feeling like I'm so tired because of my depression and fixing my sleep schedule will fix the problem 😔 I've recently discovered that energy drinks help me feel a bit better (but I still get exhausted after walking for 5 minutes or trying to clean or something) and its difficult when the one thing all doctors agree on is to not drink them :/ I do wish I could get an answer just so other people are more understanding or people like my parents realize why I have a hard time getting a job that isnt online or my therapist to realize I'm not tired because I sleep a lot, I sleep a lot because I literally don't have the energy to sit up most of the time.
Thank you so much for this video (and all your videos on chronic illness)! I love that you are sharing information and spreading awareness. I have multiple sclerosis and wanted to share the latest numbers with you. In a study released in February of this year (2019) the revised number of people living with MS in the US (E-I-E-I-O) is 1 million! Which leads to the question "How did they miscount so many?!?!?" Again, thank you for all you do!
Thank you very much for this very educational video, as always, thank you also for reminding me that I should be kind to myself, it's something incredibly hard to do sometimes.
Your description of ME/CFS is SO similar to fibromyalgia - the syndrome I was diagnosed with & also has very little reasearch done about... The worst for me is not even the pain, but the brain fog. I miss having good memory. Also, you're flawless
I relate with the heavy insides. Omg ugh... I have ms. The biggest thing they said and enforced "your biggest issue will be chronic Fatigue". They weren't wrong. Well mostly. When you said about your insides feeling like they're stupidly heavy. Yup. I often get the feeling like someone is pushing my body parts down as hard as they could. I follow a doctor on here and he said to get people to understand basic fatigue for those who don't experience it. "Start on Monday go to work go to the gym don't sleep then go back to work on Tuesday exercise don't sleep and then let's go for a walk on Wednesday morning and talk about fatigue". I'm in Scotland there's little to no help for those with me/cfs. "Fatigue management" is a few weeks training, and done. You'll likely get a medication IF, IF your condition is severe enough. And even CBT it an IF moment.
So wonderful the details you give in your explanation of this. It is something I never heard of before. So very much appreciated for better awareness of what others with this , go through.
The current theory is that ME may be a metabolic trap. It's been theorised that there is a widespread faulty gene and if gene were involved it would have to be widespread to account for the outbreaks of ME/CFS following an outbreak of something else. At any rate, it appears that 75% of the population has this mutation and it is believe it only gets turned on when the body experiences extreme threat (that's up to the body's cells to determine that). That might need to happen once in a lifetime or once every few generations. However, when it happens, if this faulty gene is not working, the metabolic trap happens and people stay stuck in illness. This has been the best theory thus far according to all I've read. Why am I writing this? Because we patients have been saying for years that this could happen to anyone and that means everyone should care. Well, it looks like it could happen to 75% of the population. It's always been around, but our environment's degrading and so the body may be under greater threat in general. People without ME/CFS need to care enough to advocate for us. As you can see by her explanation, even those with mild who are working lack the energy to do much more. We are a group who advocates at the expense of our own lives. We need allies. We need allies to pressure governments to provide research dollars, to demand that medical schools teach about ME, to counter the ongoing myths and stigma. Please tell others and encourage them to help us because it could be you, your child, your sister, your friend. I've had three friends in real life come down with this and be made severely disabled. (We also have higher rates of heart disease and cancer.) I have it. It is more common than people know.
My mum has had ME for almost 2 years, since just after my youngest brother was born, so now I'm a carer for her and looking after my 3 younger siblings while I'm doing my A levels :/
Olivia Persaud that sounds like it’s a lot of pressure for you. There’s a website called Babble - it’s a place where other young people in similar situations can chat and get advice. That might be helpful for you. Make sure you let people around you (school/college) know so they can support you too. Hope things get easier and good luck with your A Levels x
Wow watching this has helped , recently my mum was diagnosed with M.E and I couldn't understand it very much but you helped me have a clear understanding :D
There's a familial link and so here's something you need to know. Take care of yourself. Don't overdo. If you're tired rest. Don't push yourself. Don't let others push you. Work for balance in your life.
I don't have an ME diagnosis, but so many of the symptoms you've just described to me are things I experience every day! ESPECIALLY the "organs feeling heavy" thing. I don't know why I feel like that, it's just something that happens. Thank you for making this video!
Hypermobile Ehlers Danlos Syndrome and POTS here. It’s not much better in our camp either. Because there isn’t a gene or genes for our variant of Ehlers Danlos Syndrome yet, doctors think we are hypochondriacs and need CBT rather than rubbish connective tissue
Omg, the description of putting thoughts together is so perfect. That's how I felt when I was taking Topiramate for migraines. I described it as: you're deep asleep, someone shakes you awake, and demands you do a difficult mental math test and vocab test at the same time, but it's that difficult for even relatively simple words like "return" that you normally can use with ease. But I like your description better. 😊❤️🧲🧲
I think I'm just going to go translate this into Spanish and give it to my doctor. I've been feeling like my brain has gotten slow and my body has gotten weak for more than 6 years and no doctor has ever even told me this illness exists. I've been tested for everything possible and all I got is I have IBS but no one that I know with IBS has experienced the symptoms I have. I feel as I have become dyslexic and yes I know that's not possible but it feels like it. It gets harder every time to focus, to read and to write. I keep skipping lines and messing up words. My memory is getting worse and it frustrates me, because it used to be great. I'm just 24 and a half an hour walk gets me fatigued. Big events completely destroy me. I live with a constant lack of strength and no matter how much sleep I get, I never feel rested. I also have random headaches most days. I never felt so close to knowing what's wrong with me until I watched this. So thank you, from the bottom of my heart.
Oh my God. I've never heard of this, but this is the first time I have seen all of my symptoms together. My bloodwork is always normal and no one knows what's wrong with me.
Thank you so much for this video! I’m battling with chronic illness so I completely relate to everything you are saying. It’s so comforting to know that I’m not alone because it can be extremely isolating at times. Thank you for being such a positive and powerful voice for us spoonies! Much love to you my friend 🌈🙏🏼
My mum has M.E. and I have a few friends who have fibromyalgia or M.E. as well. I recently watched a documentary on Netflix called Unrest and it's really detailed about the subject having been done by someone with it.
emo.hufflepuff when they exclude everything else and determine you have that. Lol. There aren’t any tests for fibromyalgia. I spent months trying to figure out what’s wrong with me and had so many tests, so many blood draws, appointments with specialists, and found nothing. They have to rule “everything” else out to diagnosis fibromyalgia, so once they ruled “everything” out they gave me the diagnosis. I think it’s wrong, but I have to give it the old college try with this diagnosis before I go back and say I’m still exhausted all the time, no matter how much sleep I get, I’m still in pain all of the time, sometimes it’s just more bearable and I can push through it. That’s my base level now, pain, exhaustion, fog/cognitive issues, etc.
My mom has ME and it was really bad when I was little. My aunty looked after me and my brother. My mom always slept in the day so she had acupuncture to balance her xxxx
Different things work to a degree for different people. Acupuncture did nothing for me. Many of us spend thousands and thousands of dollars on treatment and when we finally sit back and take a wait and see attitude (regarding the latest suggestion) people then accuse us of not wanting to get better. We get emotional fatigue from trying so many things that either don't work or only work for a little while before things spiral down again. And debilitating illness robs one of income and if you're not married to someone with money, this can mean not being able to afford any new "treatments."
...I take my healthy body for granted. I forgot to follow you on IG, I feel terrible, good thing you plugged it. Your hair is so beautiful and it's beautifully styled.
'sometimes I'm just too scared about expending too much energy to be excited' oh I know this feeling far too well! It's such a delicate balancing act, except if you had no idea how many balls you were juggling and when they were coming back down to you, and then far too often you get way more than you were expecting thrown at you at once and it all comes crashing down...
Jessica, your videos are so well researched and articulated. The mix of facts and jokes as well as sharing your personal experience of your chronic condition make learning from your videos enjoyable. I don't know a lot about how research spending is allocated in the UK, but in the US it is certainly governed by how politicized it is. Best to you and may you have more good days than bad while living with your chronic illness.
A lot of these things are really relatable but I know I can't even begin to understand how it feels to have ME, I'm glad people with this have someone like you to talk about it to a wide variety of people. Thank you for what you do, I hope you and others with ME and other chronic illnesses get the answers you deserve.
Edit: I'm sorry, Jessica, I was a bit self-absorbed this morning; I've had a bad day too, I'm afraid. I enjoyed your video; I hope your move goes well and you don't pay too big a price for participating. You being quite a bit earlier in the Time Zone than we in the States are, I hope you and Claudia have your bed made up and you are having a restorative night. If work continues tomorrow, remember: Every job needs a supervisor. Now, here's the whinny part; Take care. I've got some illnesses (mostly undiagnosed), that affect pain levels, energy, mood, etc. These things don't affect things below my neck much; It's "All in my head" :) My biggest challenge is mornings, where I tend to wake up and think, "Oh hell, it's morning", and stumble through for most of the day. I have somehow learned to turn myself on for appointments I have to be to, but my daily self-talk hasn't worked for when I'm trying to get to the service club I just joined. So, with some hesitation, I contacted a member and asked them to give me a call little before the meeting so I can have some accountability. Don't know if it'll help, and I'm embarrassed to have to ask (aka, why can't I have a "normal" life?), but it sure won't hurt if I don't ask. Hey Jessica!-Going to start a vlog before summer's out, dealing with chronic illness and disability, advocacy, cool "stuff", first person; it's still in the planning stages. Have a great day!
"You are never letting anyone down. You're not. This is just your story...The world will continue and you will have a place in it." I needed to hear this tonight. I need to internalize it, but I will keep repeating it until I believe it. Thanks you, Jessica. Love.
I don’t have ME, but I understand primordial exhaustion like nobody’s business. It struck me while watching that this video - in fact, your whole channel - is so important for people that do suffer from the conditions you educate on. There are times when I feel completely discordant with my body and what it’s decided to do, and I feel embarrassed and isolated to be dealing so poorly with problems that don’t even exist in other people’s lives. But seeing you talk about all these things gives me (and lots of others, no doubt) hope that there will come a time when I feel at one with myself and able to live a happy, fulfilled life. It also spurs me to be kinder to myself and take time to do the things that bring me joy. Thank you so much!!
I am not chronically ill but this video made me cry at the end. You're a lovely person, and you deserve to be kind to yourself. I'm sure this video will help a lot of people having the same experiences as you, and it's helped me understand ME/CFS further and get more of a sense of what it's like to experience. If anyone is feeling lonely or sad while reading this and wants to talk to a random stranger, I'm here.
You my lovely one, could never be too kind to yourself. I've had SLE and ME for around 40 years and you, in the few months I've been following you, have made me feel less like a failure and less isolated than just about anyone else in those 40 years. Thank you.
Drunk person pushing same pole magnets together is an amazing way to describe how I feel pushing through brain fog with my stubborn optimism and determination! 😂 This is a brilliant video Jessica. So eloquent and complete. Thank you for making it. I’ve had ME for 15, nearly 16 years. Moderate at the moment. And oh my goodness that life impact funding graph 😮
I wasn't healthy before getting ME (had severe depression and undiagnosed POTS - I've recovered from the depression, the POTS got worse), but there was a specific trigger (swine flu) and I had to go through lots of extra investigations to make sure it wasn't the other stuff. Having a family history of ME probably helped, and being lucky enough to have decent consultants. Unfortunately before we figured out it was ME (and that I've had POTS since puberty), I pushed to continue exercising and doing far too much so for the last few years I've been almost completely bedbound. I'm doing better than my worst though so I'm hopeful, and it turns out you don't need to be able to sit up to go out with the right wheelchair and hoists 😊
it's 5 am and I woke up at midnight so ugh, a few things Thank you for talking about this, it always brightens my day when I see people trying to raise awareness of ME I often describe the cognitive stuff as wadding through waist high mud, some times in a thick fog My mum has MS and more often then not she is far more able to live "normally" than I am (I'm on the moderate to a little severe side) Getting diagnosed was a nightmare, thank god for my lovely gp. So many visits to the hospital with chest pain, palpitations and fainting and just got "well nothing seems to be wrong, are you sure it's not your anxiety?" 6 years later I get diagnosed with POTS. GET sucks, I keep getting told to do it to get better, so I decided to do it to show people it didn't work, managed 3 days of 4-5 minute walks and then crashed for over a week. So screw GET Therapy is great for learning how to deal, especially if you already had depression, the downs can get much more down when you're unwell, and your emotional wellbeing does affect you physically, but it should never be used as a treatment for ME, but an aid and I forgot this sentence while typing it. I'm tired, I'm going to go eat cookies and watch videos. I get too rambley when I don't sleep well
Thank you for this, Jessica. The lack of research into and consequent misunderstanding of ME/CFS is so frustrating. A particular bone of contention for me at the moment is that when I've told people about my recent CFS diagnosis, a few have responded by telling me about someone they know who's had the illness for many, many years. It's strange that anyone would feel it appropriate to respond with such a devastating piece of information.
I'm in the stage of (possibly) diagnosing ME. I feel as he'll neglect me incorrectly* and I get so mad, yet sad and hopeless. You're so sweet in this video though (as usual lol), it makes me happy! I loved your video about independence, that really hit me! * _by incorrectly, I do not mean that I have self-diagnosed myself and if he disagrees, he's wrong. I mean that he seem to neglect it _*_only_*_ because my lumbar puncture came out clean, while that's not considered a 100% symptom or the only indicator_
I hope that you also say the validating and comforting things you tell us, to yourself. You are enough and strong and although our illnesses may indeed leave us incapable of helping in the ways we feel we must, we help in tons of other ways. i.e: your humor, hugs, or just presence may be just the thing Claudia needs your help with on during moving day. Thanks again for making these videos. 💖
i get so annoyed at the medical establishment and it's belief that any medical condition it doesn't know much about must be "mental and emotional" in cause. Particularly as someone with a severe mental illness, it took me forever to get anyone listen when i was very physically ill. And when dealing with pain and they state "it's all in your head". Well yes, that's what pain is! It's your body telling your brain that something is wrong. Thank god i found a chemist (who found me over the counter short term pain relief) and an acupuncturist/naturopath who were able to help me with bad IBS that was about to put me in hospital because the "expert" gastroenterologist wouldn't do a single thing. And they are still helping me while i decide whether to go through more bloody testing for POTS and similar conditions. Sorry - rant over! Love seeing these videos as they do help me feel like i'm not alone in my frustration xox
Thank you for posting this, it honestly means the world to know someone else feels the way I do. I have had ME since I was 6, and no one wants to talk about it. This disease has stolen my childhood and yet people still tell me to just "sleep it off". Im 16 I should be out at parties and experiencing life, but I'm stuck in bed 80% of the time.
My Husband has M.E., you would not believe the way he was treated here in Sweden, from being laughed at, to being forced to walk till he fell over. Hope came on the horizon and we were sent to a hospital doing research for M.E., he was rejected as his symptoms were too bad and they wanted people they could cure!!!!!!! Love your videos and you and your wifes attitudes to life, Your both amazing.
This all sounds so much like my experience with Fibromyalgia. I guess there's a bunch of chronic illnesses that have been lumped together and maybe with more research we can parse them enough to really make some headway on curing them. ❤️
I am so very glad I have found your channel. My situation is different from yours, however I still gain strength from your words. You are a true blessing!! Thank you for being you 💜
I have CFS and these descriptions sound almost word for word with mine. Granted CRS is only one of my several diagnoses. I have made some improvement but that has plateaued out & I was told it would eventually get more & more progressive. I will be 31 in October, cant work, cant really help out arround the house and I have the beautiful children ages 8, 6 & 5. My husband as been so amazing & I honestly believe I wouldn't be alive without him. Thank you so much for making this video! I hope your down days pass swiftly & dont reach too critical. I would send you a spoon or more but I've used mine up for the next 4 days batteling several flares & an infection I have all at the same moment.
Thank you for covering this! I'm only part way through but wanted to pause to say I'm grateful you brought up that depression and anxiety are the result of chronic illness/disability, not the cause. Preach! I can't tell you how many times I've had to state to drs "I'm depressed BECAUSE I've become disabled" and at every appt, no matter the specialty, they ask if I'm experiencing depression or anxiety, which always makes me on edge bc so many (male) Drs have told me my very real and painful and dangerous symptoms are all in my tiny messy woman head. I can't hide that I have mental health issues bc it's obvious from my medication list, so that's not an option. So now I state from the start, "Yes, I have depression. Because that's what happens when your whole life is restricted and you lose everything you enjoyed or were passionate about due to disability," said very matter of factly. Like, seriously, don't even think about playing that bs with me. Yes, psychological trauma has damaged my nervous system permanently, but that doesn't mean I have a psychological issue and I'd be cured if only I did some CBT 🙄- it means I have a physiological, real neurological illness that requires proper treatment! Also, thank you for the term hyperacusis (sp?)! Now I have a term for it! I experience a lot of sounds as physical pain in my body, sometimes messing me up for a whole day. I figured it was due to my wonky nervous system crossing wires somewhere. Now I have a term to research and discuss. ETA: I also agree that what is labeled as ME/CFS is actually a spectrum of different illnesses with some overlapping symptoms. And until the medical community starts research with that in mind, we're going to keep going in circles and hearing "there's no pattern, there's no cause, nothing we can do, have a nice life (what's left of it). 🤦🤬 I'm watching this vid 2 years out. I'm so sorry to hear that you were struggling so very much with the move. I'm glad you were finally able to enjoy the new house and I hope your post- move crash wasn't too terrible. 🤗 I appreciate all the time you put into your videos. You give so much to people with your presence, your eloquence, your sense of humor, your intellect and your kindness. 💖
Thank you so much for continuing to make wonderful videos. Awareness and normalising is so important, and you do such a fantastic job! Some of your videos have really helped me though bad patches where I felt like giving up on everything. Chronic illness is so relentless, but you show people how bold, beautiful, and badass we can be ❤
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"If you're well enough to go to work, why can't you come to my party?"
"Because I'll pass out in the potato salad, Janet." 🤣🏆🙌
You are my shero, Jessica!
Ahh your hair is beyond perfection in this video!
Let's be real, her hair is always fantastic
@@heatherspill5817 oh, 100% It is literally a wonder and I live in happy jealousy of it!
I am so jealous of her hair 🙂 I cant do anything with mine lol
@@franlats0705 I feel the exact same way!
The little bun (looking things) so cute
"I'm panicking about how I'm going to look after my children that I don't yet have, while still living with an illness that I thought would get better". That is just a summary of my life at the moment.
I love your voice and accent. It's like listening to actors in an old movie
Right?
Not only that but also her looks
Sensitive to sunlight, sleeping only during daylight hours and breathtakingly beautiful? M.E or vampire?
Something Dreadful 🙌🙌🙌
When I was diagnosed, my doctor told me that I needed to start swimming three times a week. After one hour of swimming, I was bedbound for days and couldn't face going back. When I saw him again he said that if I wasn't going to even try to get better with exercise, then I clearly wasn't interested in getting better. I wonder how he feels now that the evidence shows that exercise is one of the worst things you can do. I gave up on doctors for ME, (another told me I was just going to feel tired for a while and maybe take a nap) and I just figured out how to do my life on my own. The medical community has been helpful with my other diagnosis, but for ME, they seem to have nothing to offer. Hugs to all those suffering.
Sending you love and hugs as well ❤
I'm sorry that was your experience and that it so often happens that way. It took 6 years for me to be diagnosed because noone would listen and by then I was already in the 'moderate' mostly housebound stage. And the supposed experts recommended GET and CBT. Thank goodness I already knew how damaging GET is so I refused that part. I was already seeing a therapist (for mental health issues) but CBT doesn't cure M.E. It only helps people cope with the depression that inevitably follows. It's all so backward! I'm now in the severe category where I'm mostly bedbound. I've been ill a total of 13 years now. Not exactly how I thought I'd be spending my 30s! We need funding and medical professionals that actually understand us.
i understand the struggle! i have ehlers danlos syndrome and doctors only want to treat me with exercise, and it really only makes things worse..
adoptingjoseph yup a lot of the time doctors can’t help with things they don’t understand...
😭
I watched with tears in my eyes. I was remembering back 25 year when I had a newborn baby, and a husband with ME/Chronic Fatigue.
Before ME/CF, he had been a canoeist, hillwalker, surfer studying for a PhD. At his worst, when our baby was 6 weeks old, he could only manage to walk to the loo and back, and even then he had to rest before making the journey to bed. There had been a six month decline before the little one was born, and he was ill for a further eight months. Thankfully, the only memories he has of that time involve our daughter. He can't remember how ill he was, only that he fell madly in love with a tiny infant.
Twenty five years have passed. He did get better, and was able to return to hillwalking, and PhD-ing. He was, and is, a very involved father, and a very loving husband. He's also does mountain rescue, and is part of a team of volunteers that get called out for missing person hunts. The difference between then and now is huge.
ME/CF is real. It is debilitating, and it's so important that people who have it are believed, and treated with fairness and compassion.
I am so happy to read that your husband now is in good health ❤ It is crucial for those of us trying to recover to be treated with kindness, compassion and respect. Much love to you and your family.
I'm going to show this to my husband. We are exploring a diagnosis of CFS/ ME and it's really scary for us.
He has good days and then some days he's is barely there if that makes sense 😔 but looking at this, there looks to be light in the future. What did he/ you do to help him through this time?
Kudos to you for supporting him through this hard time with a young baby! That's so amazing!
Again thanks for posting this. It's really helped me today. X
....I want to cry and call my doctor and say "look can we consider this as a possible explanation instead of retesting my blood again and again and again for the same things that are never going to show up"
Drs kinda suck at times. I keep having blood tests and have had genetic tests which show a big fat 0, funnily the hypermobility or heds gene has yet to be found so genetic and blood tests wont help. Them listening and doing research however might help haha
Hope they listen to you soon x
@@franlats0705 however genetic testing should be provided to people with suspected EDS hypermobility type in order to rule out other forms of EDS
@@abbiebann2440 they should but I had to fight to get what I did, I'm now 31 and trying to get to the bottom of what has been plaguing me since I was a child.
@@abbiebann2440 I think what I'm.meaming is that repeated testing that shows nothing everytime needs to be looked at and them realise just because they want something to show up doesn't mean it will
This was me with my Lyme diagnosis. Over a year doing the same blood tests over and over. Then I went to a private clinic, got tested through them, came up positive for borrelia, bartonella, and babesia which required a specific test just for them since they don't do anything to show up on normal blood work except maybe some inflammation markers. Which I was later told showed up but it was borderline okay so I shouldn't be surprised it wasn't followed up on.
What's wrong with myalgic encephalomyelitis? My pronunciation of it. Literally every time.
I can blame me not being a native English speaker on that inability to pronounce this illness but it's not like I can pronounce it any better in the German way.
I quite honestly forgets what its called most of the time despite having it for over 8 years.
I've watched several of Jessica's videos and often thought I have a lot of the symptoms of her condition myalgic encephalomyelitis. Then in this video she said it's called chronic fatigue syndrome in the U.S. and I was like, oh! I think I do have that condition, then. (None of my doctors have ever diagnosed me with it because my fatigue is sporadic and I have other medical conditions that cause fatigue too, but I think I might have cfs).
@@xzonia1 Mine was sporadic for most of my life and then I slid into disability. Many have what appears to be sudden onset and a good number have long-term onset. I wish you the best. You might want to see about getting on a waiting list to see one of the few specialists in the country if getting the diagnosis will help you in any way.
@@IExpectedBSJustNotThisMuchBS Thank you!
Every health care professional should be forced to watch this.
yes, they should!
I agree! as a med student this video has given me a whole new understanding of ME, a condition which in the past I have struggled to fully grasp the effects of. Jessica should really consider looking into volunteering as a professional patient to go into med schools to educate on the patient perspective of ME as I'm sure so many others could benefit from hearing info like this! :)
They are starting to ask what have you read about.. and I also use the term when they come after me with dr google isn't a great idea. I also respond drs only study the condition so don't you dare confuse your degree with my lived experience. It's got me most extraordinary results. As well as saying when they say that there is nothing we can do. I ask to see that they where righting it in the notes refusing to treat x condition or refere on. It really does help to make the medical professionals accountable. I have a great wrap around team now.
M.E. is just called CFS where I am so people constantly say "oh you're just TIRED? I'M TIRED TOO" like no dude I'm freaking exhausted from the most basic things, then I can't sleep, and when I do sleep I may as well not have
Can you try using the ME name? I know people with It. They are often belittled because of the name. ( i find because woman have it more, it's more bias towards it) . I have Fibromyalgia. I'm often not taken seriously as being disabled. I also have complex ptsd. Most people don't know that non- soldiers can have it. Mine is from an extremely traumatic early childhood. Unless I go into detail with people who know nothing about mental illness or physical illness ( and how they connect), they often do not believe I'm disabled. But once I go into detail about my trauma ( which I should not have to do to get validation), they often understand why I am sick.
Here too... I started useding ME/CFS and put longer version on forms etc... It helps a bit but still have to explain more commonly known as... Etc
Yes.... tired.... not exhausted to the point of wanting to puke or being unable to get out of bed..... 😕 I also find it almost insulting when I'm so 'tired' that I cant function yet I see every hour through the night. Then if i do sleep my body and mind is like 'haha sucker tricked you'
Honestly sleep does NOTHING... so instead I end up lying in bed doing nothing all day
@@iciajay6891 I have CPTSD too. I hate being told I'm too young and don't have it bad enough.
my mum has M.E and our family ALWAYS gives the “you’re not ill enough” line 🙄 this video was great for me to know more about my mums illness, as i have to help her with it sometimes, so thank you very much :)))
Sending love to you and your mom! I can so relate to other people saying those things. Thank you so much for helping your mom - it means the world to us when we have people help us and try their best to learn and understand. X
Lots of people are abandoned by friends, partners, and family. I call this friend, partner, family flight. I'm glad your Mum has you.
When I was diagnosed with M.E. I was fourteen and literally just told this is what you have, there is no cure, get on with it. It's taken seventeen years and countless hours on the internet finding other who have had this and finding out what the frick my body is doing. So many of my symptoms I didn't know were part of this thing.
So thank you Chronic Community for giving me some answers and a feeling of not being alone.
Your experience sounds just like mine. I was 14 too and told to just get on with it, and have done ever since no matter how many times I go back to new Dr's. I've I'd been given proper advice from the start I wouldn't be anything like as sick as I am 20+ years later. So thankful for the internet and chronic illness community too. How I wish it had all been there years ago!
I have 'moderate' ME and I moved three weeks ago, but I spent the first week lying down in a sea of boxes. It's only now that i'm feeling excited (finally on the ground floor - no exhausting stairs!!) and settled, but it was worth it! Hope yours goes well! 😍😍
Incidentally I was diagnosed at university and was referred to the Bath adult fatigue place and every time someone brought up the PACE trial I swear they would shoot flaming daggers from their eyes. My doctor at the time told me to do that and the nice people at the fatigue place sent him an incredibly passive-aggressive email back telling him they'd advised me never to see him again 😂 x
Gigglypeach,
STAIRS ARE EVIL
My school has an elevator as they are required by law to make the school easy to enter but *they never turned the elevator on* so I cannot use it... thanks school
@@user-ly3pj1yz4l Oh dear, your idiot school! Bless you, hope they sort themselves out soon! My university was the same, I had to get a very kind, tall and strong friend to literally carry me up the stairs sometimes 🤦♀️x
Because I'll pass out in the potato salad, Janet! 😂
There are so many “D.I.D.” puns oh my god they’re all so good.
I was misdiagnosed CFS/ME for 7 years. Well actually undiagnosed for years and then misdiagnosed with CFS/ME. EVERYONE who has this needs to get tested for Lyme disease by a Lyme literate medical doctor. I am sorry for spamming so many of you in the comments with this exact comment. I don't want to offend anyone who has CFS/ME. I was tested for Lyme disease when I first started becoming fatigued and of course, it came back negative. I was also put on antibiotics about 13 times over 2 years because of the frequent infections I was getting; so I thought well if I had Lyme I don't anymore since I was on antibiotics so many times. But the Lyme had already been in my system for years at that point and unless diagnosed early antibiotics aren't going to do a damn thing.
I was part of the CFS/ME community for 7 years and I understand how irritating it is that someone on the internet thinks they know what's wrong with you when you know just how many tests you've had done. But I think why ME/CFS isn't getting conclusive results when doing studies is because there are so many of us in this grouping who are misdiagnosed! Also, you know, the lack of studies is to blame. So if you have looked into the things I am mentioning here please forgive me, I just want so badly for CFS/ME and Lyme to have a cure and if we are mixing up the diagnosis then it's going to make it even harder for us to get one.
Long story short the typical Lyme test tests for the antibodies that fight against the Lyme bacteria (borrelia burgdoferi) not actually testing for borrelia burgdoferi. There is a place called Ingenix that does a better version of this test but even with that test, I was not CDC recognized as having Lyme. You must have a certain number of markers that come up as positive and I had all of the markers I needed minus one that was not even negative but was indeterminate. So in a sense, I had 4.5/5 positive markers for Lyme. To a Lyme Literate MD (LLMD) that is a positive result as long as you have the symptoms of Lyme. Which are pretty much the same as the symptoms of ME/CFS. To a typical doctor, they just come back and say "It was negative.. again. You know the mind is a powerful thing. Let's try CBT."
Get your CD57 tested. Much like people with Aids would talk about having a low CD4, oftentimes people with Lyme have a low CD57. My primary did this test for me so if you can convince someone to do it for you, that is an easier test to do first. If it's low then continue down the LLMD path.
If you can find someone who does blood microscopies do one. Mine was filled with spirochetes. This is also another obvious sign you have Lyme, you know, or syphilis. The only two bacteria shaped like this.
Look into mold exposure as well. I don't have this but it is something my LLMD tested me for as it has similar symptoms to Lyme and CFS/ME. I wish I could expand on this topic but the brain fog is kicking in.
So please if you have the money to do so, get this tested. Look into chronic Lyme disease. Look into late-stage Lyme disease. Look into mold exposure. Watch afflicted on Netflix. I was convinced that I had been tested for everything and I was very much mistaken.
If you want to talk more please feel free to reply back to this and I'll give you my email.
I have fibromyalgia and complex ptsd. My old Dr knew I had ptsd. But continued to insinuate all my medical issues were ' hyprocondriacte'. It took him 15 years to admit that my self diagnosis of Fibromyalgia was accurate. Thanks. -_-
My new Dr is under 40. And not a misogynist. They were actually trained about Fibro. Which is in the arthritis category. I have many of the things that come with it. IBS, asthma, allergy's, interstitial cystitis, crouch depression, anxiety etc. I'm glad new Dr's are trained about trauma, ( my complex ptsd is from childhood abuse) , and how it effects your health.
An ex-girlfriend of mine has both fibro and complex PTSD also from her childhood, as well as several other diagnoses. It took her a very long time to get recognition from doctors too. I'm glad you're getting proper treatment now, chronic pain is horrible to live with but PTSD can be worse. Having to deal with both is not a good hand to be dealt. Makes me feel lucky to only have had moderate M.E. in my time. Good luck to you.
I have fibro and cptsd as well. I'm really glad that you were able to find a doctor that hears you and validates your experiences 💜
Another fibromyalgia sufferer here with CFS IBS I hope you continue to get the support you need ♥️
that old doc is a real you know what, I'm glad you switched!
Another fibromyalgia sufferer, I went through an initial diagnosis of CFS, then fibromyalgia as my sister has arthritis and I was experiencing widespread pain along with brain fog and fatigue. I'm now at the point where I tell my doctor new symptoms and she just shrugs it off. Extremities going numb for no reason? You must've been leaning on it. Sensitive to dairy? You must be imagining it. I've kind of hit a wall in my treatment where my doctor hit fibromyalgia and anything new past that doesn't matter
disability puns for the win!
I feel like those kinds of jokes have their..... benefits
Lmao yes
Thank you for this video ❤ I have M.E. and it really did make me feel less alone.
Me too!
There are some illnesses that cause isolation, and ME is very high on that list. You are not alone, neither is Layla and Sapphire. We see you, and we are glad you are here.
@@maghouinbeg5011 Thank you so much for your kind and thoughtful comment. This community is so lovely ❤
"Because I'll pass out in the potato salad Janet" This is honestly so relatable! I can't tell you how many times in the last few years I've had to cancel with friends due to my illnesses or I look ok that day but I have so little that I can't leave the house, not even brush my teeth because I have to force any & ALL energy just to make it work each day
It’s so much more than just “being tired” as people say. it’s your entire BODY being exhausted, but you can’t sleep. you lay in bed and your brain just STOPS working. It feels like you’re in a fog and somehow you’re genuinely unable to speak because it’s too hard to form words, or even think because you’re so confused about everything around you. because your brain has just quite literally shut down. and so you just la there and cry cuz.. well else is there to do. and imagine all of this happens JUST from spending your regular old day working at your office job. the smallest tasks are the hardest. THAT is fatigue.
I totally have the issue with be too tired to talk. I’ll sometimes start a sentence and then a few words in my brain just stops and I don’t have the energy or congnition to finish so I just wave my hands like “forget it” and walk away.
@@librocurious me tooooooo! It's like not only can I not think of how to finish the sentence that I started, it's also really physically tiring to talk, like it's tiring to breathe in enough to be able to talk.
Clearly defined thing-a-mabobs get better funding than unknown thing-a-magiggies. And...the more scientific testing the higher the expected income from a medical breakthrough and marketing of the next , best, wonderdrug. Yay, capitalism!
Thank you so much for this. Moderate/severe MEcfs person here. As awful as all the stupid symptoms are, sometimes dealing with the controversies & the lack of understanding around MEcfs is the thing that gets to me most. As if I deliberately picked getting ill with something that folk can't even agree on the name of, never mind the cause. Anything that helps to chip away at the MEcfs fog is a Good Thing & this video is a Very Good Thing.
(Away to lie down now as thinking & typing & words & my brain is starting to fizz 👍)
UGHHHH brain fog! I hate it
Sorry you have it bad too 💜 . I'm 90% bedbound. It's tough. Sending you some extra spoons!
th-cam.com/video/KNXwM7U4uNI/w-d-xo.html watch this
I was misdiagnosed CFS/ME for 7 years. Well actually undiagnosed for years and then misdiagnosed with CFS/ME. EVERYONE who has this needs to get tested for Lyme disease by a Lyme literate medical doctor. I am sorry for spamming so many of you in the comments with this exact comment. I don't want to offend anyone who has CFS/ME. I was tested for Lyme disease when I first started becoming fatigued and of course, it came back negative. I was also put on antibiotics about 13 times over 2 years because of the frequent infections I was getting; so I thought well if I had Lyme I don't anymore since I was on antibiotics so many times. But the Lyme had already been in my system for years at that point and unless diagnosed early antibiotics aren't going to do a damn thing.
I was part of the CFS/ME community for 7 years and I understand how irritating it is that someone on the internet thinks they know what's wrong with you when you know just how many tests you've had done. But I think why ME/CFS isn't getting conclusive results when doing studies is because there are so many of us in this grouping who are misdiagnosed! Also, you know, the lack of studies is to blame. So if you have looked into the things I am mentioning here please forgive me, I just want so badly for CFS/ME and Lyme to have a cure and if we are mixing up the diagnosis then it's going to make it even harder for us to get one.
Long story short the typical Lyme test tests for the antibodies that fight against the Lyme bacteria (borrelia burgdoferi) not actually testing for borrelia burgdoferi. There is a place called Ingenix that does a better version of this test but even with that test, I was not CDC recognized as having Lyme. You must have a certain number of markers that come up as positive and I had all of the markers I needed minus one that was not even negative but was indeterminate. So in a sense, I had 4.5/5 positive markers for Lyme. To a Lyme Literate MD (LLMD) that is a positive result as long as you have the symptoms of Lyme. Which are pretty much the same as the symptoms of ME/CFS. To a typical doctor, they just come back and say "It was negative.. again. You know the mind is a powerful thing. Let's try CBT."
Get your CD57 tested. Much like people with Aids would talk about having a low CD4, oftentimes people with Lyme have a low CD57. My primary did this test for me so if you can convince someone to do it for you, that is an easier test to do first. If it's low then continue down the LLMD path.
If you can find someone who does blood microscopies do one. Mine was filled with spirochetes. This is also another obvious sign you have Lyme, you know, or syphilis. The only two bacteria shaped like this.
Look into mold exposure as well. I don't have this but it is something my LLMD tested me for as it has similar symptoms to Lyme and CFS/ME. I wish I could expand on this topic but the brain fog is kicking in.
So please if you have the money to do so, get this tested. Look into chronic Lyme disease. Look into late-stage Lyme disease. Look into mold exposure. Watch afflicted on Netflix. I was convinced that I had been tested for everything and I was very much mistaken.
If you want to talk more please feel free to reply back to this and I'll give you my email.
The ending was amazing, I really needed to hear that today
Between POTs and ME taking a shower and brushing my teeth is basically an assisted (because it's horribly unsafe to do alone) marathon. There's a rest period, hydration, sometimes sweating or blacking out.
Good ol' POTS, making us feel sweatier than before the shower :)
POTs: making me drip sweat in 45 degree weather 😒
I understand 😭😭😭😭i jave m.e hyper pots and mast cell .showered this morning blacked out luckly got to floor of my bath chair 29 going on 100..... xxx
I was once there and my brain was so incapacitated I'd never have thought of baby wipes and disposable toothbrushes so I could do some self care in bed. And my partner--one who fled--was so not invested in helping, that that person's brain also didn't come up with ideas on how I might meet basic needs like that.
Given that you have POTS, it's likely you have low BP, if you are not already consuming salt water or electrolytes, please have your electrolytes tested and read up on this. My very severe symptoms improved over time (to severe to moderate, waxing and waning) with the addition of salt water (I can't use the electrolytes because my body retains potassium--genetic issue--and that would be problematic). Salt in water seems to be the best way to get it; some do better with saline IV a couple times a week (we have blood volume issues), but not all can get that and in the UK it's basically impossible.
If you already know this, perhaps someone who doesn't will read this and research on the topic for their own benefit.
Are POTS and ME the same thing? I have POTS but this is my first time hearing of ME
Omg I get the heavy organ thing too, no one else believes me
Same. I don't have a diagnosis for anything but I understand you. I sometimes (a lot) get this feeling were it is like EVERY cell in my body weighs ten pounds each.
@@rhiannon1833 I've just now gotten my doctors to realize I'm not faking it, I'm in the process of getting diagnosed with EDS
Same here! It's so hard to explain to people what it feels like.
I liken it to feeling like my cells have all been filled with lead. It’s not just my organs, it’s all my soft tissues. Alpha Lipoic Acid has really helped though, 600mg 2x/day with food on the advice of a new(ish) doctor. It’s still there but dramatically better since starting it 6 month ago.
I commented elsewhere but I also have ME & EDS as well as severe autoimmune issues from a near fatal bout of adult chickenpox (varicella in the UK) in my 20s; which was what triggered the ME in the first place 9 months after being hospitalized for the outbreak & resulting pneumonia from having them internally as well as over every square cm externally. It took nearly a decade to piece all that together & I didn’t even get the EDS diagnosis until this last winter. They wrote the hypermobility including full hip displaysia & severe tachycardia off basically as 🤷🏻♀️. Very first thing my new doctor said after reading my history was “has anyone ever examined or tested you for Ehlers Danlos?” Nope...
Same my mom just brushes it off I think I will add it to my list of things I need to talk to my doctor about
Someone named Janet must have really pissed Jessica off at some point 😂
..oh n o
My name is Jessica and my mum's name is Janet lol
@@jessicahoward9046 So you can relate!
I imagine that "Janet" is the equivalent of Bob Ross's cabin in AK
Lmfao my go to is “Karen” because Karen was my racist homophobic neighbor. 😝
You’re the best, Jessica. Thank you for doing what you do. My wife suffers from ME and EDS and we both find comfort in your videos and your continued effort to bring chronic illness awareness to the masses. Thank you again!
I have fibromyalgia, which is so similar to M.E / CFS, some people have it in conjunction with each other. We get told, new symptoms should always be checked out, to then be told, by the doctor, oh its just the fibromyalgia, and without doing any tests or anything, everything gets put down to the condition already existing and so many people don't bother going to the gp anymore because we just assume it's the fibro/M.E (other chronic illnessess) and there's been many cases where people have got seriously ill and/or sadly died.
Did you know about the Sims 4 pride update? They added quite a few cool pride items to the game for free.
That update is perfection
I saw the flags! What else did they add?
@@megantaylor2871 I'm pretty sure they added some clothing.
@@megantaylor2871 A swim suit type thing, some t-shirts and rainbow leggins! Also gender neutral bathroom doors.
@@phreyah What does one see on the door to know it's gender neutral?
It’s so discouraging that there isn’t enough research on ME/CFS, despite there being a LOT of people who have this disease. I will be sharing this video so there can be more awareness of this debilitating disease. Good job on creating awareness for ME! 😃
Thank you so much for making this video. I've been thinking I should probably learn more about ME/CFS lately since I've had it for 3 1/2 years now. It was kind of cathartic to be checking off a lot of the symptoms as oh yep have that. That magnet analogy was so true too! I'm so grateful for all the information you provided and clearly presented and explained and am already planning to send this video to friends to explain what's 'wrong with ME' in the future.
The emotion in your voice at the end when talking about having to stifle joy in order to conserve energy, I feel that. Thank you for including that. I think that was extremely valuable to see how this kind of fatigue plays into every part of our lives and also I do it to and am grateful to see someone else talking about it. I love watching you and Claudia but this has soared to the top of my list as my favourite video of yours! I can't say thank you enough.
I was misdiagnosed CFS/ME for 7 years. Well actually undiagnosed for years and then misdiagnosed with CFS/ME. EVERYONE who has this needs to get tested for Lyme disease by a Lyme literate medical doctor. I am sorry for spamming so many of you in the comments with this exact comment. I don't want to offend anyone who has CFS/ME. I was tested for Lyme disease when I first started becoming fatigued and of course, it came back negative. I was also put on antibiotics about 13 times over 2 years because of the frequent infections I was getting; so I thought well if I had Lyme I don't anymore since I was on antibiotics so many times. But the Lyme had already been in my system for years at that point and unless diagnosed early antibiotics aren't going to do a damn thing.
I was part of the CFS/ME community for 7 years and I understand how irritating it is that someone on the internet thinks they know what's wrong with you when you know just how many tests you've had done. But I think why ME/CFS isn't getting conclusive results when doing studies is because there are so many of us in this grouping who are misdiagnosed! Also, you know, the lack of studies is to blame. So if you have looked into the things I am mentioning here please forgive me, I just want so badly for CFS/ME and Lyme to have a cure and if we are mixing up the diagnosis then it's going to make it even harder for us to get one.
Long story short the typical Lyme test tests for the antibodies that fight against the Lyme bacteria (borrelia burgdoferi) not actually testing for borrelia burgdoferi. There is a place called Ingenix that does a better version of this test but even with that test, I was not CDC recognized as having Lyme. You must have a certain number of markers that come up as positive and I had all of the markers I needed minus one that was not even negative but was indeterminate. So in a sense, I had 4.5/5 positive markers for Lyme. To a Lyme Literate MD (LLMD) that is a positive result as long as you have the symptoms of Lyme. Which are pretty much the same as the symptoms of ME/CFS. To a typical doctor, they just come back and say "It was negative.. again. You know the mind is a powerful thing. Let's try CBT."
Get your CD57 tested. Much like people with Aids would talk about having a low CD4, oftentimes people with Lyme have a low CD57. My primary did this test for me so if you can convince someone to do it for you, that is an easier test to do first. If it's low then continue down the LLMD path.
If you can find someone who does blood microscopies do one. Mine was filled with spirochetes. This is also another obvious sign you have Lyme, you know, or syphilis. The only two bacteria shaped like this.
Look into mold exposure as well. I don't have this but it is something my LLMD tested me for as it has similar symptoms to Lyme and CFS/ME. I wish I could expand on this topic but the brain fog is kicking in.
So please if you have the money to do so, get this tested. Look into chronic Lyme disease. Look into late-stage Lyme disease. Look into mold exposure. Watch afflicted on Netflix. I was convinced that I had been tested for everything and I was very much mistaken.
If you want to talk more please feel free to reply back to this and I'll give you my email.
Had to restart video because I was starting at Jessica's amazing hair for first 30 seconds.
Amelia Erbs this was me too...
This is me.
I had glandular fever 10 years ago, that lasted for 3 years and I have never been the same since. A lot of the symptoms here are me.
Drs have ignored my symptoms. I am going to go to my dr and ask them to consider ME. Thank you!
I don't know if I have ME, but I do have some of the symptoms (which might be caused by several other conditions). Anyone who does have ME, I understand and you are valid
Jenny,i just wanted to say thankyou for not judging us.To live this life is pure hell.It's very common for M.E to overlap with other illness's etc.I truly hope that you manage to find the answers to your own health issues,never give up and never stop trying.I wish you all the best in the future
Thank you so much. That means a lot! I wish you all the best too.
@@jenrenby All the best Jenny :)
Primary biliary cholangitis can mimic ME--similar process in a part of the body but for different reasons, and PBC can be treated and managed. PBC can make someone appear to have severe ME. Most people are not tested for this to have it ruled out. Just thought you should know.
Yes Yes YEEESSS!!! I have Fibro/CFS and oh god the patronising nature of so many health proffesionals.
Your victory rolls look GORGEOUS. You should obviously never pass out in any potato salad when it could ruin the effort you spend perfecting the hair on your poor tired head.
this is so important! when people see the "mild" before ME they take it as "not ill" i am ill. I need help sometimes and sometimes I am too tired to work or go to school.
Ditto!! I have mild to moderate and it is so frustrating sometimes!! I've been so lucky that I've been able to go to a school for special needs so I've been believed the last 5 years but I've had some bad experiences too
Best TH-cam video I’ve seen on ME. I’m a moderate to severe sufferer and have been ill since I’m 16. I’m now 33.
I feel like only other ME sufferers will ever get how debilitating is. I used to believe that by 33 years old I’d have a partner, children, my own home, my own car, a job...
But I have none of those things. ME robbed all those opportunities from me. And I have no idea if I will ever get my life back.
But we do the best we can with what we have. I applaud you for making such great videos. I’ve got into bird watching and Buddhism. We do what we can, but hope for more xx
Sending you love ❤ It really is a shitty illness, but we are here with you. You are not alone. Do not lose hope.
tove_ sofie Thank you ❤️
I have chronic fatigue as a symptom of EDS. My best friend has severe ME. The way she experiences her fatigue is fundamentally different to mine, but I agree with you that that doesn't mean that there is a true binary between ME and CF - it just means that we fall on different ends of a chronic-fatigue spectrum in terms of how we experience our fatigue. I don't really experience PEM, or certainly not the way she does; while a lot of exertion CAN trigger an EDS flare in me that will knock me out for weeks or months, it's not something that happens every time, and in general my waves of fatigue are shorter and usually last for stretches I can measure in hours or days or weeks before I get back to baseline. However, for my friend with severe ME, one single show (we're opera singers) can make her truly non-functional for up to a year afterward, and every single, TINY amount of exertion WILL come back to hit her later in the form of fatigue, without exception.
Thank you for making this huge, complicated, and truly stigmatized topic so approachable and easy to digest - and for being so clear that while the way people experience fatigue is widely variable, and not just along a spectrum of mild-to-severe, but also in the patients' experience of other symptoms.
Yes you should be kinder to yourself today and tomorrow too. After then you can begin to make your new house a home. No sense moving into a new house you won’t be able to enjoy for weeks. Please allow others to move for you, even ask them to. Go to your new house and make them some lemonade. They will appreciate that much more than seeing you struggle about the old house. Let them worry about the old house.
Wow that last part really got to me. The isolation with chronic illness is real, man. Teared up a bit but thank you for talking about such important issues and I love your videos very much. Good luck on moving!
I’m in the moderate range. I often say that I feel like my mind is a chalkboard. And while I’m talking or doing anything, it’s like someone has wiped a section off the board....that’s it ...it’s completely gone. Bloody frustrating. Thank you for this video. ❤️
Oh my God thats the perfect description! I've never been able to put it into words!
you know there can’t be anything wrong when Jessica uploads 😍❤️
I don't have M.E. but I needed the positive message from this video today 💜
Thank you so much for your encouraging words at the end of this video. I don't struggle with any physical chronic illness (that I know of), but my depression often makes me feel like I'm lagging behind on everything and not able to live as full a life as other people. It was such a relief to hear someone say "You're not alone, you'll always have a place in the world, and whatever you can do is enough."
So...is Jessica okay if we call her our Vintage Lesbian Mom (VLM)? Because that would be such a fitting title for her.
there's VLM and then Karolina is our Meme Mom
I'm glad you made this video - despite the fact that I haven't been diagnosed with it, I do have many of the symptoms and keep getting reccomended to other doctors for specific symptoms and they don't find anything wrong...its left me feeling like I'm so tired because of my depression and fixing my sleep schedule will fix the problem 😔
I've recently discovered that energy drinks help me feel a bit better (but I still get exhausted after walking for 5 minutes or trying to clean or something) and its difficult when the one thing all doctors agree on is to not drink them :/
I do wish I could get an answer just so other people are more understanding or people like my parents realize why I have a hard time getting a job that isnt online or my therapist to realize I'm not tired because I sleep a lot, I sleep a lot because I literally don't have the energy to sit up most of the time.
I love the use of Sims in this video
Here for THIS comment lmao. Me too.
@@RedefiningBodybuilding ❤❤❤
Thank you so much for this video (and all your videos on chronic illness)! I love that you are sharing information and spreading awareness. I have multiple sclerosis and wanted to share the latest numbers with you. In a study released in February of this year (2019) the revised number of people living with MS in the US (E-I-E-I-O) is 1 million! Which leads to the question "How did they miscount so many?!?!?"
Again, thank you for all you do!
Thank you very much for this very educational video, as always, thank you also for reminding me that I should be kind to myself, it's something incredibly hard to do sometimes.
"That's me needing to go to the toilet."
The most accurate description EVER.
Your description of ME/CFS is SO similar to fibromyalgia - the syndrome I was diagnosed with & also has very little reasearch done about... The worst for me is not even the pain, but the brain fog. I miss having good memory.
Also, you're flawless
I relate with the heavy insides. Omg ugh... I have ms. The biggest thing they said and enforced "your biggest issue will be chronic Fatigue". They weren't wrong. Well mostly. When you said about your insides feeling like they're stupidly heavy. Yup. I often get the feeling like someone is pushing my body parts down as hard as they could.
I follow a doctor on here and he said to get people to understand basic fatigue for those who don't experience it. "Start on Monday go to work go to the gym don't sleep then go back to work on Tuesday exercise don't sleep and then let's go for a walk on Wednesday morning and talk about fatigue".
I'm in Scotland there's little to no help for those with me/cfs. "Fatigue management" is a few weeks training, and done. You'll likely get a medication IF, IF your condition is severe enough. And even CBT it an IF moment.
So wonderful the details you give in your explanation of this. It is something I never heard of before. So very much appreciated for better awareness of what others with this , go through.
The current theory is that ME may be a metabolic trap. It's been theorised that there is a widespread faulty gene and if gene were involved it would have to be widespread to account for the outbreaks of ME/CFS following an outbreak of something else. At any rate, it appears that 75% of the population has this mutation and it is believe it only gets turned on when the body experiences extreme threat (that's up to the body's cells to determine that). That might need to happen once in a lifetime or once every few generations. However, when it happens, if this faulty gene is not working, the metabolic trap happens and people stay stuck in illness. This has been the best theory thus far according to all I've read.
Why am I writing this? Because we patients have been saying for years that this could happen to anyone and that means everyone should care. Well, it looks like it could happen to 75% of the population. It's always been around, but our environment's degrading and so the body may be under greater threat in general.
People without ME/CFS need to care enough to advocate for us. As you can see by her explanation, even those with mild who are working lack the energy to do much more. We are a group who advocates at the expense of our own lives. We need allies. We need allies to pressure governments to provide research dollars, to demand that medical schools teach about ME, to counter the ongoing myths and stigma.
Please tell others and encourage them to help us because it could be you, your child, your sister, your friend. I've had three friends in real life come down with this and be made severely disabled. (We also have higher rates of heart disease and cancer.) I have it. It is more common than people know.
My mum has had ME for almost 2 years, since just after my youngest brother was born, so now I'm a carer for her and looking after my 3 younger siblings while I'm doing my A levels :/
Olivia Persaud that sounds like it’s a lot of pressure for you. There’s a website called Babble - it’s a place where other young people in similar situations can chat and get advice. That might be helpful for you. Make sure you let people around you (school/college) know so they can support you too. Hope things get easier and good luck with your A Levels x
Wow watching this has helped , recently my mum was diagnosed with M.E and I couldn't understand it very much but you helped me have a clear understanding :D
There's a familial link and so here's something you need to know. Take care of yourself. Don't overdo. If you're tired rest. Don't push yourself. Don't let others push you. Work for balance in your life.
I don't have an ME diagnosis, but so many of the symptoms you've just described to me are things I experience every day! ESPECIALLY the "organs feeling heavy" thing. I don't know why I feel like that, it's just something that happens. Thank you for making this video!
I love your hair style and your dress is gorgeous!
Hypermobile Ehlers Danlos Syndrome and POTS here. It’s not much better in our camp either. Because there isn’t a gene or genes for our variant of Ehlers Danlos Syndrome yet, doctors think we are hypochondriacs and need CBT rather than rubbish connective tissue
I cried watching this
I am absolutely love every videos of Jessica uploading. It is beyond than the word of “awesome” with all of content , her attitude and also subtitle.
Omg, the description of putting thoughts together is so perfect. That's how I felt when I was taking Topiramate for migraines. I described it as: you're deep asleep, someone shakes you awake, and demands you do a difficult mental math test and vocab test at the same time, but it's that difficult for even relatively simple words like "return" that you normally can use with ease. But I like your description better. 😊❤️🧲🧲
I think I'm just going to go translate this into Spanish and give it to my doctor. I've been feeling like my brain has gotten slow and my body has gotten weak for more than 6 years and no doctor has ever even told me this illness exists. I've been tested for everything possible and all I got is I have IBS but no one that I know with IBS has experienced the symptoms I have. I feel as I have become dyslexic and yes I know that's not possible but it feels like it. It gets harder every time to focus, to read and to write. I keep skipping lines and messing up words. My memory is getting worse and it frustrates me, because it used to be great. I'm just 24 and a half an hour walk gets me fatigued. Big events completely destroy me. I live with a constant lack of strength and no matter how much sleep I get, I never feel rested. I also have random headaches most days.
I never felt so close to knowing what's wrong with me until I watched this. So thank you, from the bottom of my heart.
Oh my God. I've never heard of this, but this is the first time I have seen all of my symptoms together. My bloodwork is always normal and no one knows what's wrong with me.
Thank you so much for this video! I’m battling with chronic illness so I completely relate to everything you are saying. It’s so comforting to know that I’m not alone because it can be extremely isolating at times.
Thank you for being such a positive and powerful voice for us spoonies!
Much love to you my friend 🌈🙏🏼
My mum has M.E. and I have a few friends who have fibromyalgia or M.E. as well. I recently watched a documentary on Netflix called Unrest and it's really detailed about the subject having been done by someone with it.
always appreciate your messages of kindness towards yourself and others
I learned how to deal with chronic pain from Jessica, she is my hero
Madeline Peck +
From this video, I've learn that ME is very similar to Fybromyalgia with the symptoms
emo.hufflepuff and both are diagnosis’s of exclusion.
@@veronicamassey1694 I'm a little bit of a fool. What does that mean?
@@ace.chaos17 basically they test for everything else, and then kind of go 'well, since its nothing else, I guess you probably have -this-'
I've been diagnosed with fibromyalgia but I suspect it might be ME instead
emo.hufflepuff when they exclude everything else and determine you have that. Lol. There aren’t any tests for fibromyalgia. I spent months trying to figure out what’s wrong with me and had so many tests, so many blood draws, appointments with specialists, and found nothing. They have to rule “everything” else out to diagnosis fibromyalgia, so once they ruled “everything” out they gave me the diagnosis. I think it’s wrong, but I have to give it the old college try with this diagnosis before I go back and say I’m still exhausted all the time, no matter how much sleep I get, I’m still in pain all of the time, sometimes it’s just more bearable and I can push through it. That’s my base level now, pain, exhaustion, fog/cognitive issues, etc.
My mom has ME and it was really bad when I was little. My aunty looked after me and my brother. My mom always slept in the day so she had acupuncture to balance her xxxx
I love acupuncture, they know what they are doing with that!!
Anna Hovakimian awesome. I’m not too sure on exact details but it really helped my mom too x
Different things work to a degree for different people. Acupuncture did nothing for me. Many of us spend thousands and thousands of dollars on treatment and when we finally sit back and take a wait and see attitude (regarding the latest suggestion) people then accuse us of not wanting to get better. We get emotional fatigue from trying so many things that either don't work or only work for a little while before things spiral down again. And debilitating illness robs one of income and if you're not married to someone with money, this can mean not being able to afford any new "treatments."
...I take my healthy body for granted.
I forgot to follow you on IG, I feel terrible, good thing you plugged it. Your hair is so beautiful and it's beautifully styled.
"Moving through treacle".
Yes, this.
BTW thank you for saying "you are not alone".
I burst into tears😭
Ugh. I have Chronic Pain and Chronic Fatigue, it's always nice to have someone else "get it". Gentle hugs 💗
I love watching your videos and how you keep it real. I hope you have as healthy as possible year!
'sometimes I'm just too scared about expending too much energy to be excited' oh I know this feeling far too well! It's such a delicate balancing act, except if you had no idea how many balls you were juggling and when they were coming back down to you, and then far too often you get way more than you were expecting thrown at you at once and it all comes crashing down...
Jessica, your videos are so well researched and articulated. The mix of facts and jokes as well as sharing your personal experience of your chronic condition make learning from your videos enjoyable. I don't know a lot about how research spending is allocated in the UK, but in the US it is certainly governed by how politicized it is. Best to you and may you have more good days than bad while living with your chronic illness.
A lot of these things are really relatable but I know I can't even begin to understand how it feels to have ME, I'm glad people with this have someone like you to talk about it to a wide variety of people. Thank you for what you do, I hope you and others with ME and other chronic illnesses get the answers you deserve.
My mum suffers from this too. Its nice to see someone who understands too.
Edit: I'm sorry, Jessica, I was a bit self-absorbed this morning; I've had a bad day too, I'm afraid. I enjoyed your video; I hope your move goes well and you don't pay too big a price for participating. You being quite a bit earlier in the Time Zone than we in the States are, I hope you and Claudia have your bed made up and you are having a restorative night. If work continues tomorrow, remember: Every job needs a supervisor. Now, here's the whinny part; Take care.
I've got some illnesses (mostly undiagnosed), that affect pain levels, energy, mood, etc. These things don't affect things below my neck much; It's "All in my head" :) My biggest challenge is mornings, where I tend to wake up and think, "Oh hell, it's morning", and stumble through for most of the day. I have somehow learned to turn myself on for appointments I have to be to, but my daily self-talk hasn't worked for when I'm trying to get to the service club I just joined. So, with some hesitation, I contacted a member and asked them to give me a call little before the meeting so I can have some accountability. Don't know if it'll help, and I'm embarrassed to have to ask (aka, why can't I have a "normal" life?), but it sure won't hurt if I don't ask.
Hey Jessica!-Going to start a vlog before summer's out, dealing with chronic illness and disability, advocacy, cool "stuff", first person; it's still in the planning stages. Have a great day!
"You are never letting anyone down. You're not. This is just your story...The world will continue and you will have a place in it."
I needed to hear this tonight. I need to internalize it, but I will keep repeating it until I believe it. Thanks you, Jessica. Love.
I don’t have ME, but I understand primordial exhaustion like nobody’s business. It struck me while watching that this video - in fact, your whole channel - is so important for people that do suffer from the conditions you educate on. There are times when I feel completely discordant with my body and what it’s decided to do, and I feel embarrassed and isolated to be dealing so poorly with problems that don’t even exist in other people’s lives. But seeing you talk about all these things gives me (and lots of others, no doubt) hope that there will come a time when I feel at one with myself and able to live a happy, fulfilled life. It also spurs me to be kinder to myself and take time to do the things that bring me joy. Thank you so much!!
Instantly started crying when you said "you're not letting the world down"
Thank you 💜
I am not chronically ill but this video made me cry at the end. You're a lovely person, and you deserve to be kind to yourself. I'm sure this video will help a lot of people having the same experiences as you, and it's helped me understand ME/CFS further and get more of a sense of what it's like to experience.
If anyone is feeling lonely or sad while reading this and wants to talk to a random stranger, I'm here.
You my lovely one, could never be too kind to yourself. I've had SLE and ME for around 40 years and you, in the few months I've been following you, have made me feel less like a failure and less isolated than just about anyone else in those 40 years. Thank you.
I hope the move went/goes well, I'm sorry to hear things have been so hard for you lately, you're a wonderful lady who brings joy to many lives
Drunk person pushing same pole magnets together is an amazing way to describe how I feel pushing through brain fog with my stubborn optimism and determination! 😂
This is a brilliant video Jessica. So eloquent and complete. Thank you for making it. I’ve had ME for 15, nearly 16 years. Moderate at the moment.
And oh my goodness that life impact funding graph 😮
I wasn't healthy before getting ME (had severe depression and undiagnosed POTS - I've recovered from the depression, the POTS got worse), but there was a specific trigger (swine flu) and I had to go through lots of extra investigations to make sure it wasn't the other stuff. Having a family history of ME probably helped, and being lucky enough to have decent consultants.
Unfortunately before we figured out it was ME (and that I've had POTS since puberty), I pushed to continue exercising and doing far too much so for the last few years I've been almost completely bedbound. I'm doing better than my worst though so I'm hopeful, and it turns out you don't need to be able to sit up to go out with the right wheelchair and hoists 😊
it's 5 am and I woke up at midnight so ugh, a few things
Thank you for talking about this, it always brightens my day when I see people trying to raise awareness of ME
I often describe the cognitive stuff as wadding through waist high mud, some times in a thick fog
My mum has MS and more often then not she is far more able to live "normally" than I am (I'm on the moderate to a little severe side)
Getting diagnosed was a nightmare, thank god for my lovely gp. So many visits to the hospital with chest pain, palpitations and fainting and just got "well nothing seems to be wrong, are you sure it's not your anxiety?" 6 years later I get diagnosed with POTS.
GET sucks, I keep getting told to do it to get better, so I decided to do it to show people it didn't work, managed 3 days of 4-5 minute walks and then crashed for over a week. So screw GET
Therapy is great for learning how to deal, especially if you already had depression, the downs can get much more down when you're unwell, and your emotional wellbeing does affect you physically, but it should never be used as a treatment for ME, but an aid and I forgot this sentence while typing it. I'm tired, I'm going to go eat cookies and watch videos. I get too rambley when I don't sleep well
Thank you for this, Jessica. The lack of research into and consequent misunderstanding of ME/CFS is so frustrating. A particular bone of contention for me at the moment is that when I've told people about my recent CFS diagnosis, a few have responded by telling me about someone they know who's had the illness for many, many years. It's strange that anyone would feel it appropriate to respond with such a devastating piece of information.
I'm in the stage of (possibly) diagnosing ME. I feel as he'll neglect me incorrectly* and I get so mad, yet sad and hopeless. You're so sweet in this video though (as usual lol), it makes me happy! I loved your video about independence, that really hit me!
* _by incorrectly, I do not mean that I have self-diagnosed myself and if he disagrees, he's wrong. I mean that he seem to neglect it _*_only_*_ because my lumbar puncture came out clean, while that's not considered a 100% symptom or the only indicator_
I hope that you also say the validating and comforting things you tell us, to yourself. You are enough and strong and although our illnesses may indeed leave us incapable of helping in the ways we feel we must, we help in tons of other ways. i.e: your humor, hugs, or just presence may be just the thing Claudia needs your help with on during moving day.
Thanks again for making these videos. 💖
i get so annoyed at the medical establishment and it's belief that any medical condition it doesn't know much about must be "mental and emotional" in cause. Particularly as someone with a severe mental illness, it took me forever to get anyone listen when i was very physically ill. And when dealing with pain and they state "it's all in your head". Well yes, that's what pain is! It's your body telling your brain that something is wrong.
Thank god i found a chemist (who found me over the counter short term pain relief) and an acupuncturist/naturopath who were able to help me with bad IBS that was about to put me in hospital because the "expert" gastroenterologist wouldn't do a single thing. And they are still helping me while i decide whether to go through more bloody testing for POTS and similar conditions.
Sorry - rant over! Love seeing these videos as they do help me feel like i'm not alone in my frustration xox
Thank you for posting this, it honestly means the world to know someone else feels the way I do. I have had ME since I was 6, and no one wants to talk about it. This disease has stolen my childhood and yet people still tell me to just "sleep it off". Im 16 I should be out at parties and experiencing life, but I'm stuck in bed 80% of the time.
My Husband has M.E., you would not believe the way he was treated here in Sweden, from being laughed at, to being forced to walk till he fell over. Hope came on the horizon and we were sent to a hospital doing research for M.E., he was rejected as his symptoms were too bad and they wanted people they could cure!!!!!!!
Love your videos and you and your wifes attitudes to life, Your both amazing.
This all sounds so much like my experience with Fibromyalgia. I guess there's a bunch of chronic illnesses that have been lumped together and maybe with more research we can parse them enough to really make some headway on curing them. ❤️
I am so very glad I have found your channel. My situation is different from yours, however I still gain strength from your words. You are a true blessing!! Thank you for being you 💜
I have CFS and these descriptions sound almost word for word with mine. Granted CRS is only one of my several diagnoses. I have made some improvement but that has plateaued out & I was told it would eventually get more & more progressive. I will be 31 in October, cant work, cant really help out arround the house and I have the beautiful children ages 8, 6 & 5. My husband as been so amazing & I honestly believe I wouldn't be alive without him. Thank you so much for making this video! I hope your down days pass swiftly & dont reach too critical. I would send you a spoon or more but I've used mine up for the next 4 days batteling several flares & an infection I have all at the same moment.
Thank you for covering this! I'm only part way through but wanted to pause to say I'm grateful you brought up that depression and anxiety are the result of chronic illness/disability, not the cause. Preach!
I can't tell you how many times I've had to state to drs "I'm depressed BECAUSE I've become disabled" and at every appt, no matter the specialty, they ask if I'm experiencing depression or anxiety, which always makes me on edge bc so many (male) Drs have told me my very real and painful and dangerous symptoms are all in my tiny messy woman head. I can't hide that I have mental health issues bc it's obvious from my medication list, so that's not an option. So now I state from the start, "Yes, I have depression. Because that's what happens when your whole life is restricted and you lose everything you enjoyed or were passionate about due to disability," said very matter of factly. Like, seriously, don't even think about playing that bs with me.
Yes, psychological trauma has damaged my nervous system permanently, but that doesn't mean I have a psychological issue and I'd be cured if only I did some CBT 🙄- it means I have a physiological, real neurological illness that requires proper treatment!
Also, thank you for the term hyperacusis (sp?)! Now I have a term for it! I experience a lot of sounds as physical pain in my body, sometimes messing me up for a whole day. I figured it was due to my wonky nervous system crossing wires somewhere. Now I have a term to research and discuss.
ETA: I also agree that what is labeled as ME/CFS is actually a spectrum of different illnesses with some overlapping symptoms. And until the medical community starts research with that in mind, we're going to keep going in circles and hearing "there's no pattern, there's no cause, nothing we can do, have a nice life (what's left of it). 🤦🤬
I'm watching this vid 2 years out. I'm so sorry to hear that you were struggling so very much with the move. I'm glad you were finally able to enjoy the new house and I hope your post- move crash wasn't too terrible. 🤗 I appreciate all the time you put into your videos. You give so much to people with your presence, your eloquence, your sense of humor, your intellect and your kindness. 💖
Thank you so much for continuing to make wonderful videos. Awareness and normalising is so important, and you do such a fantastic job! Some of your videos have really helped me though bad patches where I felt like giving up on everything. Chronic illness is so relentless, but you show people how bold, beautiful, and badass we can be ❤