What's wrong with ME? [CC]
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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!
"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.
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
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 love your voice and accent. It's like listening to actors in an old movie
Right?
Not only that but also her looks
....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.
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!
Sensitive to sunlight, sleeping only during daylight hours and breathtakingly beautiful? M.E or vampire?
Something Dreadful 🙌🙌🙌
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! 😂
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.
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 ❤
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.
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
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.
"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
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!
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!
ua-cam.com/video/KNXwM7U4uNI/v-deo.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
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!
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! 😃
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
disability puns for the win!
I feel like those kinds of jokes have their..... benefits
Lmao yes
Had to restart video because I was starting at Jessica's amazing hair for first 30 seconds.
Amelia Erbs this was me too...
Best UA-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 ❤️
"That's me needing to go to the toilet."
The most accurate description EVER.
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!
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.
you know there can’t be anything wrong when Jessica uploads 😍❤️
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."
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.
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!
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
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 don't have M.E. but I needed the positive message from this video today 💜
I love the use of Sims in this video
Here for THIS comment lmao. Me too.
@@RedefiningBodybuilding ❤❤❤
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
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.
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. 😊❤️🧲🧲
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.
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. 😝
Yes Yes YEEESSS!!! I have Fibro/CFS and oh god the patronising nature of so many health proffesionals.
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.
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 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.
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 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.
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 +
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 🌈🙏🏼
'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...
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.
I love your hair style and your dress is gorgeous!
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.
"Moving through treacle".
Yes, this.
BTW thank you for saying "you are not alone".
I burst into tears😭
...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.
"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 love watching your videos and how you keep it real. I hope you have as healthy as possible year!
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.
Ugh. I have Chronic Pain and Chronic Fatigue, it's always nice to have someone else "get it". Gentle hugs 💗
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 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!
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.
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?
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.
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!
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.
Yesssssssss I’m so glad you’re talking about this! I have ME and so many people don’t understand what it is (or blatantly don’t try to understand when they make you explain it to them...).
I know!! When I say to people 'it's not just tiredness though', people ask me to explain, and when i have they almost always say 'oh so you just need to do more exercise/go vegan' etc.. Nothing in my explanation would have made them think either of those things was a good idea, yet their brains don't seem to compute that they can't 'fix' me 🤦♀️
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.
Where was this when I got sick!! Thank you!! Some of this I have and know is from ME, but some of this I didn't even know was a thing!! Like the sun! I did that the other day an my skin was burning but I just tried to ignore it! Your videos are such a good resource and I wish it didn't have to be. You are telling me a lot more about things that could happen to me than the medical profession have done in the 6 years I've had this.. you are an inspiration, and I thank you!
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
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
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'm so happy for all the little girls out there that will stumble upon this video they so desperately need probably just like you did when you were first diagnosed. They are lucky to have a role model like you, we all are.
Oh my Lord. I just clicked on this because I love your channel. A few minutes in, my jaw dropped. I’m already diagnosed with EDS, fibromyalgia, and POTS, but over the past six months I have had the awful electric shock feelings daily, and been exhausted even more than I previously was. I have been nauseated daily for at least two months, and the IBS symptoms have gotten worse. I’ve been dizzy and had headaches. I’ve never had very many headaches in my life, and I’ve been getting so many. I’ve noticed I can’t remember words and I’ve always been an articulate person. I’ve always felt like my organs were slipping but I figured that was just from EDS. I think I’ll ask my doctor about ME/CFS. Thank you.
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 💜
When life gives you lemons: you make lemonade
When life gives you Lyme: you die inside every day and lemonade gives you a headache
Anyone else out there with Tethered Spinal Cord Syndrome? I have never met anyone else with it and have felt awfully alone in my pain and the last of treatment I have found myself at (7 surgeries, leaving my spinal cord too delicate to operate on now that my spinal cord is tethered again).
Sending love and spoons to all my chronic illness and disability warriors❤️ we are in this together!
There are so many “D.I.D.” puns oh my god they’re all so good.
I cried watching this
Had a CFS diagnosis for over a decade now (I'm 23). Always helps I find to hear from people still going through it, like me
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 ❤
My mum has ME and I remember how horrible it was when I was a child watching her crawling down the hall or unable to get out of bed on my birthday. Thankfully she has been steadily getting better for many years 🥰
I honestly don't know why you don't have tons of subscribers. You talk about unknown but *important* disabilities/illnesses and you're able to make puns while doing so. And don't even get me started on how pretty your dresses are ♡
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.
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.
I was recommended you by one of my SOs. I am a UK-based people with a currently undiagnosed chronic fatigue and pain condition or conditions. I fit so many things that you described in the video
Thank you for being yourself and putting yourself into this world of the Internet. To see someone who is very much like me, experiencing the things I seem to be experiencing (right down to having heavy-feeling organs, I've never encountered anybody else who feels like that before today), it means a lot to me, and gives me some hope that maybe eventually I can accept myself. Because the doctors sure won't! I have DID and autism, doctors already think I'm crazy, they just dismiss everything I tell them nowadays
But anyway, my point: Thank you. I hope you have a great many days and that your moving house went okay
My mum suffers from this too. Its nice to see someone who understands too.
How can one video help me feel valid that much?
Jessica you are simply amazing
Thanks for raising awareness. I've had M.E for 21 years and have had to work it all out on my own. I've fluctuated over the years but am the worst I've ever been at the moment (housebound/bedbound) and NO Dr's will help. They won't explore any of the newer symptoms I've got or treat anything including the severe pain I'm in constantly, the autonomic symptoms, dismissed the private haematology tests I had saying they're in borderline NHS range so nothing to worry about... 'It's just M.E, there's nothing we can do' - If a healthy person had any of the symptoms I'm dealing with there would be tests and exploration. I've been tested privately for Lyme (which is positive, but again, nothing can be done) and have had chronic EBV (glandular fever) since I got sick 21 years ago, the EBV was the trigger and it never went. I'm spending hours and hours every week doing my own research and have been for years, which is really hard when you have severe cognitive issues! I need to see private Dr's but who has the money for that when you're stuck in bed unable to work?! I feel completely let down by the NHS and the government and the lack of research, funding and treatment is literally taking our lives away from us.
Honestly, I could rant for hours haha. Saying all that, I've taught myself how to cope with my illness even at this severity and live a fulfilling and happy life despite how awful my health is. It's just frustrating and soul destroying being left to fend for yourself though with no hope of treatment nevermind a cure.
Very similar story with me xx Also 22 years...
@@kristelfae5054 I'm so sorry you've had to go through this for so long too. Sending love
@@nenemaria-cornfieldsgarden I'm sorry you have aswell, plus you look like you might be similar age... Which means it started young x
@@kristelfae5054 I was in my early teens when I got sick. In one way, I've not really known life any different so learnt to just get on with it, but it's so frustrating we've never been given the chance in life that others have due to medical neglect. I just hope the more we talk about it and people take notice the sooner the funding and research M.E so desperately needs starts to happen!
Yep. There with you. I've had it for 55 years and disabled severe for 16.
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."
To this day I was still never formally diagnosed with whatever it was, but for a year during high school I had chronic fatigue. Thankfully I somehow managed to recover, but I know so many people who havent, and who may never recover from such issues. I love to see people talking about it, largely because unless you have experienced it, you truly do not quite understand what it is like. Try having the flu for a year, with no sick symptoms, just constant limb fatigue and mental loopiness. I could stare at walls for hours and somehow entertain myself by this. I truly hope that it will become a better researched area! Especially for those of us who still have no idea what it was, or is, that made this happen.
Also I love your hair Jessica, it's always so fabulous! ❤
I am really glad that I found your channel. It has been somewhat hard to explain how i am feeling, or why I am feeling the way that I am and you have done a fantastic job of putting a voice to some of these issues. Thank you
Is it just me or does Jessicas Makeup look even better than usual?? I mean it's always on fleek but usually I don't really notice it
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.
Jessica, you truly are my favourite UA-camr! This video along with many of yours, made me feel understood and comforted, as well as motivated to keep going. I nearly cried when you talked about feeling overwhelmed and worried about the future, about handling everything life throws at you. Especially when you mentioned being concerned about caring for children you do not yet have, I felt so touched and could relate so well! Though I do not suffer from the same condition as you, I still feel connected to the struggles you describe. I have been suffering from depression and Generalized Anxiety Disorder for years and half a year ago I went through a trauma which I am still recovering from. As a result from my trauma my mind developed coping and self defense mechanisms of dissociation, consisting of Derealisation and Depersonalisation. Especially the second one can be debilitating. And unfortunately not many people have heard about these conditions, including me before they affected me. Even some Psychotherapists aren't properly informed about them... So I can relate to your problem with having to explain yourself for your symptoms, because people just do not know about your illness. That can be such a struggle of it's own. How you described being unable to put two thoughts together was spot on! As well as the feeling you get from complete exhaustion, which I am also very familiar with. Anyways, long story short: I wanted to thank you for sharing your journey with us. The good, the bad, everything. And for delivering everything in such a well spoken an positive manner. I cannot even count the times that I thought of you in dark moment, and it has given me new strength. So thank you for being you. ♥♥♥
Thank you for being so honest about your feelings and fears. I truely believe that you and your wife will give any future children you have the best life possible. Everyone has their struggles, nobody is a perfect parent, there is no such thing. All any of us can do is be the best we can each day and in the end that is enough. Your family and friends will support you, we all need support, you might just need it in a different way. ❤️🌹
I didn't even know what a myelin sheath was till my best hiking buddy got West Nile. I so appreciate your bringing issues up that will educate people like me who don't realize what they don't know.