The Most Prevalent Illness You’ve Never Heard Of! // Severe ME/CFS
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- Опубліковано 4 лют 2025
- solvecfs.org/j...
People living with severe ME/CFS are often bed-bound and unable to perform everyday tasks without assistance - eating, showering, and even standing are made nearly impossible. Each year on August 8, Severe M.E. Day, we reflect on the tremendous toll this devastating disease takes on individuals suffering from severe ME/CFS symptoms and remember the lives of those we have lost. This is also an opportunity to spread awareness and advocate for research, support, and treatment for severe ME/CFS
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I have moderate ME/CFS and really appreciate this video. People hear my diagnosis and think it means I'm just sleepy or lazy and need to condition myself more. Never mind that I was running races and in the best shape of my life when I got sick, never mind that the clinical research shows measurable cellular/physiological differences. The misconception and disbelief around our illness is astounding.
❤️
“In the best shape of my life when I got sick” SAME!!!!
I was at uni studying for a MA
The department were very understanding and I had extra time to finish the course.
Was offered a place to do a part time PhD but I was unable to take up the offer, as I was unable to get funding.
There was no way I could study and work part time.
People don't understand how life changing ME/CFS is. And not in a good way.
When ME first came out, it was made fun of, just like gluten intolerance/celiac, no one but the people who had it, understood. People still make jokes about fibromyalgia and Celiac a lot! They don't understand the seriousness of it.
@@pencilpauli9442 You sure are right about that! Seems people give themselves permission to be buttholes when they hear you have an illness.
It terrifies me to think how often people with ME/CFS end up being misdiagnosed with depression/anxiety because they cannot access specialized care or have the option of a second opinion. My heart goes out to all suffering from ME/CFS, as it must be so difficult to deal with. I wish you well, and as someone who is hopefully going to become a doctor, will make sure to keep this in mind with my future patients.
By sheer chance after years trying to get a diagnosis and going through every doctor in the surgery with varying degrees of insults. I finally got told that I was in need of a psychiatrist because obviously it was all in my head with all this fuss (classic start: tried to work through a flu-luke illness until complete collapse and never recovered so went to doctors because I couldn't work). I was so lucky that the psychiatrist carefully took note of everything I'd been suffering. She knew a fellow psychiatrist who suffered herself with ME and so consulted her. She came back and gave a positive diagnosis, not only was I not "making a fuss" but definitely had classic ME now classed as moderate ME . That was in 1988 and I've just about got the hang of recognising the symptoms of 'over-doing it' and can try and stop before I crash. But like Jessica says sometimes there's this manic phase that you can't get out of, in my case usually followed by extreme confusion and brain fog. I thank you for your concern and intention to be "one of the good ones", bless your heart and hope for more of you. 😊👏😏
Edit: in all that time I've never had any treatment. I've learnt to pace myself and listen to my body. Just took part in the research project DecodeME.
All the very best in your studies. As something that may only be a barely acknowledgement in text books Jessicas presentations are often made in a different way that makes the information easier to stick in your brain as they do mine
Thank you ❤️
Anxiety is often used as an explanation for a whole lot of stuff going wrong especially if the person was assigned female at birth.
I sadly know from experience.
I had a highly inflamed muscle in my should. Woke up in extreme pain barely able to breathe because it was of course also hurting just over my chest.
The people in the ambulance were horrible to me and not taking me serious at all. Condescending as heck really.
The doctor in the ER was slightly better but as soon as they didn't find a broken bone and the tests regarding my heart came back fine too they also wer extremely condescending. Said it was just in my head.
So I walked around with this pain and no pain management for another two weeks before I forced myself to see a different doctor who finally figured out what was wrong. By then it had already damaged the muscle so I developed scar tissue and had to do physical therapy to get back my strength in that arm.
My left arm while being left handed. Not being able to use my dominant arm correctly for weeks and months was not great for obvious reasons. That's was in late 2014/early 2015 and I still feel pain from the scar tissue straining when I exert my arm too much. Which just sucks because it's still my dominant arm. It has gotten better over time but I think now I've reached a point where it won't get better anymore.
I broke down crying to the FIFTH GP I had gone to see about my increasing pain and fatigue, and she immediately went, "you're depressed. What do you think about anti-depressants?" I was so shocked that she had jumped from me explaining how long I'd been dealing with severe pain and exhaustion with no help to anti-depressants that I stopped crying, said, "is that your final diagnosis?" and when she nodded I said thank you and walked out.
That was four years ago. I was diagnosed with fibromyalgia earlier this year after seeing a hand consultant. He actually read my entire history and said, "listen, I know you're here about your hand pain, but has anyone spoken to you about chronic fatigue and fibromyalgia?" If I hadn't seen that doctor, I still wouldn't have a diagnosis, and while I don't have a concrete management plan in place yet, at least I have an answer after over 6 years of pain and uncertainty.
A good friend of mine had ME up until her death, and constantly had to deal with everyone - doctors, friends, family, partners - not believing her. It ended her relationship with my dad. Someone once told me "i wonder how much of it is in her head" and i hung up on them. I couldn't believe it. I didn't understand why it was so hard for people to just believe someone.
My dad is now dealing with the effects of long covid and is surprised when doctors don't take him seriously. I just stare at him blankly.
What took your friends life ime sorry to hear this😢
My dad has ME and has suffered from it on and off for 15 years. He almost died from pneumonia when we were on holidays in another country and never fully recovered. He's the strongest, funniest, most caring person I know and seeing him not even able to walk 10 steps without needing to rest was heartbreaking. He was extremely involved in the community but when he got sick everyone in the community abandoned him. He eventually had to go on disability. When he started to get better and look for employment he wasnt able to find one because of what people said about him. They called him lazy and useless... It was tough but we stuck together. Getting sick really shows you who your friends are. I love my dad with my whole heart. He's the best man I know.
❤️You are right about the community abandoning people who are ill. 😞
All the people who maligned your father simply because he was sick can fuck off right to hell.
That is absolutely horrible in my opinion. When I got out of hospital after Scarlet Fever all my classmates and neighbours helped Mum so much. I hope your dad is getting lots of help and support to live a full as a life as possible. Family and friends are so important when an incredibly difficult disease strikes. All the best from me
Women here. Have had ME/CFS approx 30 yrs.
Some of ur dad's story sounds like sexism. (Women get it more than men.)
Hugs! I am a spoonie (Not ME, different illness) and the fatigue is shitty. Especially for an active person. So far, my hubby's family and our friends get it, but I still FEEL lazy when it hits. When i tried explaining that mine had a genetic factor, my blood relatives abandoned me too. They took my illness as a personal insult and blamed my dad for me being sick. Frackers. Tell your dad he's not alone. ♥♥♥
I have moderate-severe ME that sometimes dips into severe territory and it's absolute hell. Being so ill all the time is something that healthy people just can't fathom
I am so sorry. The one thing I know is it is NOT BEING LAZY. The one thing someone with chronic illness would love would be to get up and take part in life. I would love to cut the grass, or go to work, I'll do anything.... because anything is better than just resting and dealing with pain.
My illness is quite severe, but still on the moderate side, because I can still go outside in the garden, and I can shower once a week.
I was able to leave home maybe once a month, but realise that I won't be able to leave home much more, since the repercussions are so severe.
@@kittymervine6115is your muscle.pain daily
THANK YOU FOR MENTIONING LONG COVID! I've been disabled by the symptoms for almost 2 years, and all doctors tell me tests are normal, and they don't know how to fix it. I was fired because of it. I'm about to lose my house because of it. And so many people still think it'd not real.
I don't know what country you're in, but in case it's the USA:
Long COVID is now explicitly, federally protected as a disability, and it's definitely not okay to be fired for it.
(Also under the ADA, you're considered disabled if you have a disabling diagnosis, and/or if others view you as disabled. If they treat you differently because of it, or refuse to make accommodations, that's illegal.)
www.eeoc.gov/wysk/what-you-should-know-about-covid-19-and-ada-rehabilitation-act-and-other-eeo-laws
You're absolutely not alone and your struggle is definitely real. Getting Covid-19 is potentially also the cause for my symptoms (or at least made them worse), and the impact of even non-severe Covid can be huge. I hope you'll be able to access help, and I'm sending some love
I hope you can get the help and everything you need going forward, I'm so sorry, love to you ❤️
Yeah over 18m for me - I have a diagnosis of postviral fatigue now, I'm a lot better than I was - was severe until month 12-15 and it was traumatic and so so boring. I was super fit and working 2 jobs when I got ill. Hopefully we will get better, solidarity x
Hugs to you, internet stranger.
I am a 2nd year medical student in Australia. We have just finished both autoimmune and Neurology 'blocks' in our semester, which means we have'learnt' these topics and wont be reviewing them again for maybe a year, if ever whilst I'm at school.
We didn't learn about ME/CFS at all. I clicked on this video because I find the internet an amazing resource to learn about conditions and patient experience in a way that I don't learn at school, and it prompts me to do my own research and build my own knowledge. Its a huge pitfall that such a common condition wasn't even mentioned in our 5 weeks of neurology.
Thankyou for your video, Ive learnt so much not only about ME but also the patient perspective and how to give better care
If you are at all open and interested in it, I would highly encourage you to become an MECFS specialist. We globally desperately need more MECFS specialist doctors, as many of them are getting older and will be retiring soon.
I have mild/moderate ME/CFS since I was 24, 8 years now. I can’t believe how many of us are suffering in silence without the recognition we deserve. My heart and love is totally on those with severe ME today. I spent 2 years bedridden and have tasted but a fraction of what they go through. They are the bravest and strongest humans on earth and I’m inspired by them. They deserve better from us, their government, and the scientific community.
After being housebound for years and having so many people say something to the effect of, "yeah, I'd love to chill out at home more", I really couldn't help but feel a little smug a week into lockdown when everyone was losing their minds because they couldn't leave their house for a bit. It actually isn't fun when you can't leave and I think as a society we recognize this now!
Hi! I'm a co-founder of Opera Mariposa, a disability-led and -run org that's raised more than $100,000 for ME/CFS research and support through various charitable events since our inception. Thank you for using your platform to talk about the realities of this often-debilitating disease. Awareness that it means so much more beyond "tiredness" is absolutely vital. Even in the last ten years, I've seen understanding of it change so much, and yet we still have so far to go.
Yeah. Just... thank you. 💖
Thank you for what you are doing also !!!
Thank YOU!
Oh my goodness, I’m not far from where it’s based! How exciting. Thanks for sharing about it.
Too tired to shower! Even with the shower seat, gosh I love that one.
I really have a hard time explaining why I feel this way. Just the energy to disrobe, and the sensation of the water, the temperature it drains my energy.
@@alwaysjiji7198 I use Wen or another cleansing whatsit as opposed to shampoo because it keeps my hair clean longer. Then I can just use wipes but even that’s exhausting. I tend to wear things I can fall asleep in to save energy on dressing.
i've been dealing with chronic fatigue (and pain) since i was about 10 and i'm 26 now. whenever i talk to someone about it who doesn't understand, they either get super uncomfortable and/or dismissive. it's nice to be reminded that i'm not alone in this shit that i've been dealing with for over half my life now ❤️
Join the facebook groups ♥️ Life changing to find the community!
Same though I'm 23, people have been calling me lazy since I was a kid despite being that one kid that tried to climb everything and loved playing. If it was a choice why would I choose to suffer and be treated like I'm lesser than? If being young was the cure no kid would die from any illness. Sure I can function enough to go to school a few days a week before I crash and suddenly I'm getting kicked out. Sounds like freaking fun not being able to work or have any income or rely on the government for money but not enough to move out to the smallest cheapest shoebox ever bc it's full taxes on that baby. And not being able to meet friends bc I can't walk for 5-10 min without hell spawning inside of me, that's fun and doesn't make me feel guilty at all.
Man who wouldn't choose a life like this where even rest is painful and the only break you get is if you're not conscious. Love that for me. I can't remember the last time I didn't feel pain. Sorry for the rant lol
I'm 23 in New Zealand! You're not alone! I've definitely been affected since I was at least 10-11 when trauma happened and I also got a slew of viral illnesses
@@alexisasheep6554have you been diagnosed autism adhd
I have ME/CFS. It’s difficult to explain how at times I can be fine, but at others I’m bed-bound, unable to care for myself. Sending love to all my fellow ME/CFS sufferers, especially those battling the more severe kinds. It’s so amazing to see creators talking about this and spreading awareness - thank you for your content !! 💜
Honestly one of the scariest parts of fatigue for me is the fact that I don’t have the energy, mental or physical, to actually put myself on track to get better. I can keep myself alive day to day with lots of help, but i can’t take the initiative to look into treatments or make medical appointments or even know what symptoms i need to get help for, because my brain fog and fatigue keep me from managing that. Thank you for raising awareness about various chronic illnesses, and especially ME, which makes it very hard for people to advocate for themselves 💕
Right?! It's so hard to make the steps to hopefully improve your life when you're struggling just to keep yourself alive and manage all the symptoms each day! That's where my mental health takes a huge hit, because I'm lying in bed going "I need to do this, I need to do that" but my brain and body are like, "nope." Maybe if I get the help I need, you two wouldn't struggle so much!
Well luckily for us there is no cure, and mainly is just management.
@@beepbopboop7727what is your worst symptom me 27 years
Thank you, Jessica, for still advocating for ME even though it is no longer your diagnosis. I find your videos very helpful, emboldening and uplifting! ♥
She still takes it personally and advocates. I love that about her.
Yes. She's amazing!
Hi. I have a dear friend that has had ME since she was 26 and now she is in her 40s. I have fibromyalgia and we deal with similar issues. We both now the struggles of chronic illness. We love each other as sisters and Facebook has helped us tremendously to stay in touch. We both use walkers (Jessica you would love mine it has dino and Dr. Who stickers on it) and we joke that we are like a biker gang but with walkers! We try to find joy even though we may have bad days. Thank you for bringing awareness. I shared it to her. Thank you again.
As a rollator user I definitely want to join a bikers gang but with walkers
My rheumatologist who diagnosed me with fibro said he believes that CFS/ME and fibro are the same condition just different ends of a pain spectrum, so many of the other symptoms overlap
I have a rolator with a bunch of decorations that I made bc they all look like they where made by my nan
@@rivertam7827 mine says my chronic fatigue is just another symptom of fibro...not sure what he thinks about the condition in general but at least in my case that's what he says.
gang for ppl with mobility aids with sticker decorations!! [highfive]
I fell apart earlier this week. The depression of constantly being in pain and never having energy is real. You feel left behind by society. I'm on disability but it's not enough to pay for living and for treatments sometimes. I've got fibromyalgia and chronic fatigue (which may be ME according to the quiz). It took nearly 9 years to get a diagnosis of fibromyalgia. Three years to get on disability. This disease has ruined me not only physically and mentally but financially as well.
This video helped me feel seen. I really needed to feel seen this week. Thank you so much.
I just had my usual POTS check-up and my neurologist told me that I probably have CFS (she didn't use the term ME, but maybe that's because I'm from a different country? idk) because of my energy crashes and PEM. from what you've described in the video, mine seems to be the moderate to severe type. I'm glad to have a name for it, I just wish it wasn't yet another chronic illness without a cure or easy solution.
I currently only leave my bed around 4 hours a day in the evening, when I try to eat and shower. the rest of the day I just lay in bed feeling sick, trying to rest or distract myself from how ill I feel and hobbling to the bathroom to pee when I can't hold it in anymore. if I'm lucky, maybe by the afternoon I can prop myself up with pillows and sit up in bed and do some work (I'm an illustrator). I have one of those trays with legs that are supposed to be for romantic breakfast in bed, but I use it for my laptop and drawing tablet so I can try to get stuff done even if I can't move to a table to do it. it's so hard to explain that no, sitting in bed and at a table are not the same thing, that one is more tiring than the other. or that I may have enough energy and mental capacity to watch a video on my phone, but not to draw and get work done. people with normal energy reserves don't understand these things. they don't understand how difficult it is to have invisible barriers everywhere, how isolating it is even if we're technically never alone because we have to depend on others for everything (which is also hard mentally because we often feel like a burden). I hope having a diagnosis will at least help me when people aren't understanding of it and think I'm just being lazy or not putting in any effort to get better.
As someone without any chronic illnesses, the way I understand the misery of it is this: whenever I catch a cold or flu, I am p a i n f u l l y bored. don't have the energy to get out of bed and sometimes I think I can stand up but when I do I go "oh no that was a mistake" and have to sit or lay again, at least until I can muster myself up to go the bathroom or get a glass of water. I can't think because I'm tired and also my sinuses are filled with goo and making my head feel fuzzy. in theory I'd like to read, but my eyes get tired and usually my brain is too tired to process. I'd also love to watch a movie, but sometimes the screen is too bright and also a movie is way too long to focus on. Anything that requires actual focus, like working, is completely out of the question. I am constantly aware of how physically miserable I feel. And so, when I'm trying to understand something like ME, I remember how those sick days feel and imagine what it might be like if that was every day indefinitely, without the promise of recovery in a few days' time.
So I'm not sure how you've tried explaining it to people, but it might help if it was something like: "So you know how you feel when you have the flu? It's like that, but I'm not contagious and it lasts for years"
@@harmonicaveronica I've definitely tried that in the past, but in my experience it doesn't really work. mostly because people usually get better after an illness. they can imagine what it's like to feel like that for a few days, but not constantly and in perpetuity. they forget. also many able bodied people are able to push through illnesses and still work, etc. because they have better functioning energy reserves, their muscles are stronger from not having to be in bed all day, etc. so in the end it isn't really comparable. and thus most people can't really fathom what it's like to feel like that every single day. even if it isn't done maliciously (it rarely is), they'll expect us to be at least a bit better because that's what their bodies do. they are very sick for a bit, but they start feeling better and are able to do things even if they aren't at 100%. for many of us though, that's not a possibility. pushing through more often than not backfires on us. it's tricky. I often have to compare myself to a broken battery. one that overheats so you can't use it for hard stuff, one that doesn't recharge properly, so it's almost always empty and for which you need to have a plug nearby so it can be plugged in and can only perform for a longer period if it's plugged in. for me it translates to: I need to be lying down almost all the time, I can do some light stuff in short bursts with downtime to rest in between or do less demanding things that allow me to do them from my bed, and I need to be able to get to a bed and rest in case of an emergency at all times. this is the most effective way I've found to communicate what my life is like to able bodied people. but it's inevitable, they'll forget and expect me to be better because their brains can't comprehend the longevity of chronic illnesses because they simply don't have those experiences.
Agree- I am so aware now what expends MORE of my very limited ATP ( energy ) .
Like Emotions - lots of crying or even laughing! causes a huge " crash. "
Worse than some physical activities. Sad.
Thinking hard for few hours takes lots of ATP energy and I'm suddenly crashed.
Of course too much physical does as well but I'm ( sadly ) fascinated by the more " subtle " activities that cause us to crash. All invisible and sadly unbelievable to most.
The HARDEST thing about living with Moderate CFS/ ME is noone in my family or friends bothered to research it, walk along side me as I LOST my entire life . The Isolation and loneliness is the worst for me!
That sounds so much like me.
I have to shower the day before I plan on going to the Dr's - or I can't go, or not shower (yuck.)
I'm only taking 1 shower a week (again, yuck) and changing clothes every 3 days.
I use hospital bath wipes in between full showers.
I have a chair in the tub or yeah - no.
I'm not having a good time.
Thanks for your comment.
@@alicecain4851 showering daily is a struggle for me too (I try to shower every other day but when I have a very bad flare-up that's just not happening and it can be several days of being unable to shower without fainting), I also rely on those bath wipes and have a stool in the shower so I can shower sitting down. I also struggle with changing clothes, bedsheets, etc. some days I have to choose between eating or showering because I don't have enough energy for both. it sucks, I understand how you feel. just try to remember that we do our best with what we've been dealt and that it's not our fault that we're like this. also that you're not alone, as you can see in this comment section.
When my father was dying in hospital, I discovered that hospitals are the noisiest, brightest, most overheated places on the earth.
Not the best place to have to go.
I'm lucky to only have moderate ME/CFS. But it has still ruined my life. It's almost impossible to plan things. Even strictly managing activities, which is hard because who wants to do nothing, it's not possible to predict energy levels.
I can feel fine, and decide to go across the road to the local supermarket, get 50 yards and get the wobbles.
"He's been drinking! har har!" No he feckin' hasn't!
(TBH Most people are kind and helpful. I've had car drivers pull up and offer to give me a lift home)
Really appreciate you doing this video, Jessica, and my heart goes out to all sufferers of invisible illnesses especially those who have more severe symptoms.
ps My doctors are useless. The just don't want to know.
My partner has ME-CFS. People saying "We all get tired sometimes," or "We all crash after a big day," sound like people who wear reading glasses equating their experience with that of a blind person. Also, saying "I wish I could stay in bed all day," to someone with ME-CFS is like telling someone burned in a house fire "At least you were warm. I get so cold all the time."
Thank you so much for speaking about ME/CFS. I have moderate CFS which started out as mild. I was told I was being lazy and not moving around enough after I had a bad case if glandular fever. I didn't know any better so I pushed myself way too hard ignoring what my body was telling me. I was pushed into working part time for a year and it did so much damage. Finally getting a diagnosis was a relief but left me regretting following doctors orders previously. I'm going through an ok stage now but I was able to do so much more previously. I wish there was another word besides moderate because it doesn't feel moderate.
Thanks for sharing your story. It’s important to hear what kind of damage can be done when we are pushed to do too much.
So true about the word "moderate".
I pushed myself until I was 50 when I crashed. I knew I was tired and sore all the time, and took naps every day, and I kept going. Little did I know I had multiple diseases (Celiac and birth) but was told it was mental illness. I tried every antidepressant, but nothing ever worked. That's because I had depression due to illnesses; Celiac, ME, Erythromelalgia (EM), Polymyalgia Rheumatica (PMR), and a few others. Now I am getting a powerchair in a couple weeks which will be super helpful!
Moderate on your scale doesn't have to be the same as theirs! For them you're moderate, for you and your experiences you're higher than that. Your pain is NOT invalidated by their pain ratings! ❤
yep glandular fever. the cause is epstein barr. only clean eating can help.
Being mostly housebound is so hard! I also pushed myself into a severe state for several months. Couldn't read, and I'm a voracious reader. Couldn't watch video. Was able to listen to audiobooks for a couple of hours while wearing an eye mask. Walking to the bathroom felt like a mountain trek and I slept about 22 hours a day for a few weeks. I recovered a great deal, but found I still couldn't drive because I'd crash on the way home with the physical & mental fatigue making driving unsafe.
I'm currently moderate on most days and severe on bad days or PEM days. The last one was from having to serve jury duty because "fatigue, COPD and arthritis aren't on the list of approved court excuses" so my PCP wouldn't write an excuse. The courthouse wasn't wheelchair accessible and the judge released me just before I would have been sworn in for a long trial for "lack of ADA accommodation."
I am participating in Solve ME and it gives me much satisfaction to be doing something to help!
one of my best friends had servere ME. She had euthanesia because of it. I hope one day there will be a breakthrough so her fight, and that of millions missing others won't be lost
I have a coworker with ME/CFS. It has been incredibly debilitating for her to the point that she is sometimes unable to leave her house for months on end. For her, she developed CFS after coming down with Mono several years back. Her immune system never recovered and she is still struggling today. Luckily our work is conducive to working from home and setting your own hours so she is still able to work to a degree. Seeing how much she has struggled and suffered, my heart goes out to everyone suffering from CFS. It is a truly debilitating illness.
My sister has ME. It makes me furious when people don’t take it seriously, especially medical professionals.
Exact same!
My sister went on holiday to Morocco, got an infection of some sort and just never got better from it. She was diagnosed with ME years later. She manages her condition, but it has devastated her life. It is not insignificant and it is not “all in her head”. She was a vital, energetic woman with her shit together & is not that person any more, no matter how hard she tries. And she does try. It really upsets me when people do not take this condition seriously.
Currently on a waiting list to check for sleep apnea. if it isn't found, ME is the only diagnosis left. This video was great to see, felt understood
one thing does not preclude the other
You can have have sleep apnea as well as ME. I hope you figure it out 💜
That was the first thing they checked for for me. I was diagnosed with mild obstructive sleep apnea and told I'd get better with CPAP. Used it for two years and have not gotten better. Quit using it 8 months ago and haven't gotten better or worse. Unfortunately, doctors see that diagnosis and go "oh, that's the cause of your chronic fatigue and tons of other issues."
Having PEM, post exertional malaise, after stress or exercise or mental work, is the hallmark indicator of ME.
I ended up having both. Learning about and treating my sleep apnea actually helped confirm that I do in fact have ME :/ Like yeah, I feel "better" but I'm still in pain... and still have crashes
I had mono when I was 13 and it took over 3 years to fully recover from it. I was also diagnosed with chronic fatigue syndrome during this time. I dropped out of school and sank into a deep depression. It was only through the help of family and friends that I managed to recover. But even still I have lingering effects of chronic fatigue syndrome. I will get severe brain fog and migraines unless I sleep 8+ hours and vigorously exercise daily. This means unlike most people my age (I’m 19), I have to carefully monitor my health at every moment. Partying and drinking is out of the question. Most people call me an “old man” because of this, without understanding that I literally have to do this in order to function. Thank you for creating this video and raising awareness of invisible illnesses like this.
I am currently trying to find a doctor or team that will take my symptoms seriously. It is so aggravating how they disregard my feelings relating them to motherhood, life, stress, etc. "These are all unrelated. You're just tired. Tough it out." I am tired. I'm tired of not being listened to. I'm tired of blood tests. I'm tired of being told it's because I'm fat. I'm tired of being told it's nothing.
As someone who shifts between moderate and severe depending on how good I am with my pacing. I might have managed to stay mild if I hadn’t been referred to a psychiatrist who told me it was psychosomatic and had me trying to do graded exercise therapy for years which made me permanently worse. I mean, when you walk 100ft from your house, come home in agony, pass out for hours and stay a zombie in pain for days while also trying to repeat it while adding steps daily 💀 I will never forgive that man for making me feel like this was my fault.
SO, thank you thank you thank you for spreading awareness and helping both sufferers and the public understand.
You’re fantastic 💕
Long covid person here with chronic fatigue. My chronic fatigue is relatively mild thankfully. I realised fairly early that I wasn't recovering from covid the way others do and was off work within 3 months... so I think this helped. The illness has completely changed my life. It's a trauma. You lose a version of yourself that you'll never have again. A lot of my sadness and depression in this illness surfaces when I compare me now to me pre covid. Especially true of my bad days when I am barely able to leave my bed.
I fell ill one day 18 months after I having my baby, it was M.E... it was sudden with no illness beforehand. I was 29 then, I'm 43 now. I have moderate to severe (I have to be really careful). I have many hobbies, like knitting, crochet, gaming and learning to draw, but they're all dependent on how well I am. I asked my son the other day how he sees me (am I lazy?) And he said that "you have all these things you do, how can you be? Also Mum, resting isn't lazy, you're working (i.e. resting) hard to do the things you enjoy.
I'm also doing it to enjoy time with my family.
I don't know what I would for without them, they are so understanding and patient with me.
I was diagnosed with fibromyalgia at 11, and at that time (circa 2010) the doctor said with early cases, females tend to get worse through puberty and males tend to get better through puberty. My diagnosis was later changed to ME/CFS and got bad enough to fully drop out of school. The best thing I did was start seeing a gastro-intestinal doctor. I was on their wait list seven months but it is the only doctor who seems to understand fundamentally how it works with symptom progression.
Thank you for sharing this! Gives me a new lead to discuss at my next medical appointment next week. Best wishes to you.
can you tell us more about the gastro-intestinal doctor please? 🥺
I honestly think I’ve had it since about 14 or so, but they just diagnosed me with depression. Currently trying to get an actual diagnosis!
@@gabi.a You can read about the doctor John Chia (California) on MEpedia. His idea is that ME/CFS is caused by identifiable viruses and can be treated with antivirals, which make symptoms worse before better, like a fever when fighting the flu.
What did you take
My children grew up to learn that you scream outside. That the curtains are almost always closed. Now the oldest is almost 17 and he hates loud noises (all of them do) unless it’s there favorite song 😅 I have migraines for most of my life. And me/cfs only makes it worse. Thankfully I have a very understanding husband who is always there for me. I don’t know when it started. Can’t remember how it is to have energy or a day without pain. I remember last year. I had a day without anything and thought I was dreaming. It felt amazing. It was a one time thing for now but it gave me a mental boost to try to fight harder for more days like that.
I have ME. Thank you for spreading awareness. We need all the advocates we can get. Many of us don’t have the strength to do it ourselves.
Thank you for explaining this so well. Been living with this since, at least, the mid-1980's. Diagnosed about a year ago, with no treatment or answers. Had to stop working and hand my business off to my wife. Thank god for her. Trying to live off half of one income, can't leave the house. And thank all the gods for music.
I'm hauling into the 3rd year of long covid and ME has been an unbreakable part of my experience. It cost me so much and I'm still learning to deal with my situation and be able to live my life with some beautiful moments in it.
Thank you for your videos, Jessica. I know they are made when you're up and have enough energy to create them, but your approach to what life served you is so inspiring. Thank you for making us being heard. You're really a rolemodel.
I have been diagnosed with fibro and cfs. Many, many people tell me how much they 'wish they could do nothing all day' and it makes me feel useless and pathetic. My pain and fatigue are not fun or a joke. I try really hard to be constructive, but there are days, more often than not, that I end up crying on the floor because I simply have no strength or energy to do even simple tasks.
I had to fight for my diagnosis and I still am fighting for assistance since my condition has no concrete test to proove how sick I really am.
No one should be made to feel 'crazy' for struggling to function, but here we all are.
I have moderate to severe ME & EDS. I'm a mother of 5 who are now teenagers. It's so difficult to help them through all the things They have had to give up because of my illnesses. It kills me inside every day. I wouldn't wish this on anyone. I'm not sure I would've made the same choices to have children if I had known about my own serious illnesses before they were born. As it is in worried I may have passed on my faulty genes. It adds to the 'homesickness' & guilt that I already feel about my situation. The mourning of the life lost, the life I had & the one I could've had, the mom I could've been & all the pain my illness has caused the people I love most is the hardest part. Thanks for doing these videos. You make me smile. ❤
I have a complicated relationship with this as I was misdiagnosed with ME/CFS and IBS. It took 10 years of me getting increasingly more ill with severe stomach issues to the point of almost dying before I finally got diagnosed with Crohn's Disease. I also have Hypermobility (along with some other minor conditions) and the combination of those with no treatment or help was causing me to suffer greatly.
I really experienced the bad side of being diagnosed with ME as doctors blamed everything I was experiencing on it and therefore usually dismissed me or offered no help. My advice to anyone diagnosed with ME who experiences worsening symptoms or doesn't receive enough help is to keep trying as much as possible (I know it may not be possible at all for some). Keep reiterating what your symptoms are and how much they affect you until someone listens. There are charities who might be able to help as well. I wish everyone facing these awful symptoms the best and I hope there will be more research ❤️
In so sorry and I hope youre in a better place now. That’s the problem with the zero research! It’s a scapegoat dx either way until people actually find some proper tests and treatment
Eureka!! You have really described my chronic illness well! Thank you, Jessica. I am believed by most of my healthcare professionals, but I feel very lonely and separated from people who I previously thought were my good friends. I don't think they intend to be hurtful, but after a few years of me just not being present in their lives, they just move on without me. Of course this hurts. But I find much understanding in online support groups such as Support ME and the Long Haulers Advocacy group. Thank you, Jessica, for expressing so well how a lot of us limp through our lives.
Both my grandpa and myself have ME/CFS and it's such a gut wrenching diagnosis. I've had doctors to my face tell me they don't believe in it. I'm 19 and had to stop doing basically anything. I hope there's more research and we get taken more seriously in the future.
Thank you for making this video! This has helped me to realize that I have severe ME, and it's so helpful to finally have a name for my chronic illness.
i strongly suspect i have ME/CFS (currently mild) and i've been trying to convince my doctors to look into it, so i appreciate this!
Thank you for making this! I was diagnosed at 14yrs old. I am 39 this year. M.E is a living hell.
I've had chronic fatigue for as long as I can remember. I was always told it was just me being lazy until it got to the point where I was having to be helped off the school bus because I was so exhausted and my limbs were so heavy I couldn't move on my own. I've tried for years to get an official diagnosis with ME/CFS, but my doctors have refused. I had to fight just to get my diagnoses of Fibromyalgia and Chronic Complex Migraines. I was diagnosed with Fibromyalgia this past October because someone finally listened, and he acknowledged I likely have ME... but wouldn't officially document that. My condition has continued to worsen since my time at University, and I was house bound for a year and a half. I still rarely go anywhere alone though because I've had public energy crashes and faints that scared me too bad.
I have moderate ME/CFS and this video's great 'cause I can send it to people to help them better understand what I go through. I've had to deal with discrimination in the work place because "someone so young wouldn't have ME/CFS" despite the official diagnosis. My symptoms were made worse after I caught covid and when I have crashes I take days to recover and I'm back to square one. But thank you so much for this video!
Thank you, genuinely! It was your videos that first encouraged me to get help for my illnesses. 4 years later, and I am FINALLY diagnosed with CFS, EDS, and a severe form of Celiac Disease, on top of some weird allergy disease I am still working on. I am finally feeling better, and my body is not getting continually worse. I have my good days and bad, but overall have steadily improved since knowing what was wrong and working with my body to care for it, protect and maintain it. Thank you for being the only advocate I've ever come across, as dealing with horrible doctors for the first two years nearly made me give up. Illnesses are life lasting and some may get worse with time, but I'm thankful that I can finally care for myself and take the time I need to rest, recover and do the things I love. My CFS was really bad for almost 10 years, and I was using a zimmerframe and wheelchair at one point, but luckily, now, with taking care of myself, not pushing too hard, resting, and listening to my body, it is significantly better. I am just happy that I can say what I have, and have a way to shut up the people who think pushing through everything somehow helps your body, instead of harming it. Thank you again, because without your videos, I don't know where I would be. My love to everyone struggling with disabilities and illnesses, and whether they are getting worse, better, the same, or you don't even know - you are still so valuable and contribute so much to everyone around you!
have had a "mystery illness" type deal for several years now, took that quiz you linked, and got the result "very likely..." huh.
I had that for 8 years. It was ME. 😅
I’ve also experienced the “mystery illness” and been told I’m just a lazy teenager. I also got very likely on the quiz so hopefully it’ll lead somewhere this time! Hope you find out what’s going on with your body, I know the frustration
@@finnhurt4533 Hope you find out, too! I've been treated like I'm faking it a lot even by doctors, it's honestly the worst to be struggling and then treated like that. Sorry people have told you that, you deserve better.
I also got “very likely” but I don’t feel like I have it. Like I don’t really get sick or experience pain which seems to be a thing people with it experience. I got chronic stomach pain but that’s probably a separate thing. I probably have another thing that causes lots of tiredness.
@@rachelcookie321 check out POT, MCAS, EDS. But I have severe ME and I got "unlikely" on that quiz! My main symptoms have generally been virus type and don't have terrible muscle pain either. For years I wouldn't have said I hd it at all, but looking back my chronic back pain was worse during periods of illness and I thought it was the extra slouchibg, time on sofa etc. but now think it was a bit of central sensitisation too. Frankly I don't think that quiz is great- the idea that fatigue as most people understand it is the main symptom of "chronic fatigue syndrome" isn't always accurate!
I have ME/CFS and Hashimoto's disease. My ME fluctuates from mild to severe and I can't work a consistent schedule remotely. I can't work in person at all. Lately I've been so isolated and lonely because even though i have lovely friends who come to my house since i usually cant go anywhere. But i keep having to cancel or reschedule because i can't get out of bed or it's a bright sunny day and my head is exploding with pain or my legs ache or my back hurts etc etc. Thank you Jessica you beautiful person. Your videos are a much-needed source of empathy and sometimes even joy. ❤
T hace severe ME and my life keeps getting smaller and smaller. I am about to disappear from the society, fewer and fewer people even knows that I excist. Thank you so much for making this video and raising awareness for this horriblle disease.
Ive been suffering from a "mystery" chronic illness for almost a year now, and this video is the first place where i heard of ME. Literally all my symptoms are exactly that of ME andbit explains so much about me dying a day after i have to leave the house. Now i just have to find a doctor who could diagnose me and not go "well youre not dying but otherwise I don't know, your blood tests came back clean!! Are you sure you don't have a panic disorder"
Fun Update!!
I now have a diagnosis but I have also progressed to moderate and found out there is no support available where I live
@elavihere i'm so glad you were able to figure out what is happening, and i'm so sorry there is no support in your area :(
Hey Jessica, could you make a video on FOMO and disability? It is a topic I am very interested in
yes!! i have mild cfs, and have heard so many stories of people suffering from severe me/cfs for years without getting appropriate help and care. so thank you for talking about it!
My Mum was mis-diagnosed with ME many years ago and it was literally a case of other things were ruled out and it was just the next (incorrect) plausible option after Munchausen's, anxiety, depression, MS etc were all ruled out. She actually had neuro sarcoidosis (plus fibromyalgia, systemic lupus, rheumatoid arthritis, Holmes Adie...). I really feel for everyone who gets mis-diagnosed, the delay in getting the correct treatment has such a huge effect.
Such an articulate gem of a woman. Thanks for your advocacy you beautiful soul.
Huh… I never thought that my usual tiredness could be a physical thing, not mental. I’m diagnosed with depression, but my antidepressants do not help me with the fatigue. If I spend my day with friends (even if it’s just a couple hours of sitting and chatting) I just can’t get up from the bed the next morning. I feel like I was severely beaten up or forced to run a mile without stopping. Truly awful feeling.
Honestly, this video and the quiz in the description (which said I’m very likely to have CFS) only made me more lost.
Still, your channel is a bright spot in this cruel world. I can’t help but smile every time I watch any of your videos. Thank you for that.
Omg I have this condition (although moderate) I'm so thankful you're spreading awareness.
Even though my condition ranges from moderate to mild , it still absolutely ruined my life
I came down with "Fresher's Flu" about a month into university, (also a month after I turned 18). I'm almost 21 now and still haven't recovered all the way. As someone whose only experience akin to physical disability before then was broken toes/pulled muscles etc, IT IS HELL. On good days, I still feel weaker and heavier and slower and less energetic than my grandmother. Bad days? I've got curtains pulled, blinds pulled, blindfold on, icepack ready, taking all the painkillers I can without risking an overdose, can barely stumble to the bathroom, in too much pain to keep food down, and if I'm lucky, it's my legs seizing and spasming painfully rather than my ribs and back. I used to pride myself on my intelligence and now I've got brain fog that leaves me feeling like Dory from Finding Nemo. I've been on constant Leave of Absences from uni, I've had to leave online lectures because I couldn't answer questions without screaming in pain, and I've had no support whatsoever from doctors, no matter how many times I ask.
I just got back from a week long holiday, more than half of which I had to spend in bed sleeping instead of spending time with my family. Just last night I had to leave in the middle of a family gathering because my choices were either: bed now, or go sprawling on the concrete in front of everyone. The journey itself was a gruelling 12 hours of public transport, so I imagine I'll spend most of tomorrow borderline catatonic and trying not to scream.
Honestly, this chronic illness has ruined my life, and people who shrug ME/CFS off as "just a bit tired"?? Let the door hit you on the way out lol
I developed mild-moderate ME after getting either COVID or Epstein-Barr in january of 2020. I was in college at the time, walking to the dining hall for meals, walking to classes. By the time I got home I had failed all my classes, couldn't remember anything about the semester, and needed help getting food and items from around the house. I only left the house for doctor's appointments. I developed allergies to apples (stomach upset), my new cat (hives, had never had them before ME), and laundry detergent (also hives). I can now only sit up for about an hour and stand for about 10 minutes before I suffer post-exertional malaise, and basically any amount of time sitting up or standing is uncomfortable for me. I'm 21 and I use a power wheelchair pretty much whenever I leave the house. I'm finally going back to college on a modified schedule (taking two classes instead of the normal six) this month after 2+ years of basically solely laying down playing video games. I have ADHD as well so I was incredibly bored doing this and needed more mental stimulation, hence going back to college, but unless I find a miracle cure ever getting a job is out of the picture for me.
Dont give up on the work thing. The post covid work place is very different. Not just working from home and Zoom. When you have finished your studies you may find the perfect opportunity out there
@@juliacooper9145 unfortunately I have very limited mental energy in a day as well, I would probably only be able to work a 2-3 hour work day with very minimal tasks.
@@Hannah-dr1rl ANS Rewire seems to focus on the mental aspect and believes CFS is psychosomatic, which is against everything we know about the condition. They also seem to do physical therapy which is very dangerous for people with CFS. I'm currently seeing Dr. Susan Levine, who is a leading CFS specialist, and I'm being prescribed an antiviral that will hopefully help with my symptoms over time.
So so sorry !!
It's just the worst losing our active lives!!
You had / have so many new frustrating allergies/ sensitivities etc. My heart is with you... but what we really need is research funding !!!!
ADHD causes it especially with autism hypermobilty check out Dr lenz
I've had mild dipping into moderate m.e. for 5 years now, really needed this video on day 5 of a fatigue flare - haven't left the house since Sunday and barely left my bed during that time. Really not looking forward to going back to work and being told I'm "lucky" I got to have a week off :/
Just roll your eyes, people's perception of you is not your problem or responsibility.
Seriously fuck those people who think sick days are days off. I wish you getting back to your baseline asap
No doctor I've ever seen for ME/CFS has been able to diagnose me, all of them felt unqualified (the exact words the receptionist used), and just referred me to the local ME specialists, which are too far away for me to travel to for the most part, and the one time I did manage see them they didn't have a staff member capable of diagnosing me as he'd retired. Instead they gave me a bunch of printouts with information that I already knew. In fact anytime I've asked to get an official diagnosis I've always been met with "but why do you want to be diagnosed?" They seem perplexed as to why I'd want to have what's wrong with me to be officially put on my records.
I'm in my early 40's and I've been this way since I was 11-12 years old. It runs in my family yet I still can't get a diagnosis.
Thank you for bringing attention to this. It's such a horrible disease. I've had ME for 18 years and it's gotten progressively worse as time has gone on. There are days where I am lucky to get out of bed and days where I can rest to go do one thing.
The ignorance around this disease because I 'look fine' has been really hurtful. My last roommate told me that he wished he could stay home all the time like I do. And then promptly lost his mind in quarantine...
I was diagnosed with ME/CFS in 2013 but I started getting symptoms in 2008. I was passed around so many doctors who wouldn't know what to do or what it was. I was finally sent to someone who was able to diagnose me. To finally have a name for it really helped. I wasn't making it all up, it was a genuine health condition. For me it is either mild on better days and moderate on bad days. On really bad days I cannot function and am bedbound and have to ride it out. This video is very affirming for me so thank you for making this!
I don't have ME/CFS, but I work in a pharmacy (German in Germany) and I do know about the condition and try to be aware of it to help people that may suffer from it, especially after covid infections.
Hearing from you and the many other lovely people in the comments is very helpful to gain more awareness for both the spectrum and the experiences.
Thank you for bringing us all together, Jessica. You're continueing the Golden Girls' good work :)
I have ME and I really do appreciate this video, we need representation
I know I’m late to this video but this is a valuable set of information, as a nurse I appreciate the look at what sufferers go through, not only in diagnosis but how it affects their lives 👍🌈👏
was diagnosed at 15, I'm now 30 and have gone between mild and moderate during those 15 years. this video doesn't even cover the horrendous way that the benefits system treats us, not believing our illness is as bad as we say etc. because there are no diagnostic tests to prove it!
actually didn't know about solve me, so i will definitely be following along now! thank you for sharing jessica!
Re: the benefits system
When I applied for SSDI (US Disability benefits) based on my diagnosis of Multiple Sclerosis it took 2 appeals and an attorney who specializes in SSDI cases to finally qualify. The attorney said because some people with MS have relatively mild symptoms and can still work with accommodations if necessary it is par for the course for Social Security to automatically deny the claim. It literally took less than 30 minutes in a teleconference with an appeals judge to be approved, because it was an actual person looking at an actual person and reading their doctors' notes. Until the first big attack I had which left me with some permanent disabilities I had been working full time as a paramedic, mom to three kids, Girl Scout leader, and active in my church. But yeah, I want to give all that up so that I can stay at home and live on the pittance that you get with SSDI 🙄.
@@kelly1827 I'm so sorry that happened to you, especially with medical costs in the US. the only upside to the UK (and Scotland in particular - we get free prescriptions!) is the NHS. my friend with MS also had to go through appeals processes for benefits. I lost both of my appeals just before the pandemic lockdowns started, and have basically been forced into setting up my own business as a virtual assistant so I can work around my health flares.
YES!! and just the entire process of applying for benefits, its so damn exhausting even when you do have supportive parents/significant other etc. that can help with the process. I can only imagine how many people are surviving without benefits because they purely dont have the energy to apply for them.
I applied when I was pretty severe, yet despite that I HAD to go in person to complete it (and this was after my dad spent many hours on necessary phone calls for it as well) (altho this was clearly before covid tho, I'm sure ur allowed to do it via video chat now)
I have moderate/mild ME and I’ve had endless issues with doctors. I started having symptoms at age 10 and have just got worse as I’ve got older (currently 18). I started going to gps for help at age 13-14 and it took years for me to even be able to talk to a doctor who ran tests on me. The minute I walked in that door he didn’t believe me and after not being able to find anything on blood tests he told me I have ‘low stamina’. It was heartbreaking. I couldn’t both go to school and have a social life because I would be so tired it hurt. I only got to fight for my diagnosis due to my amazing mother doing everything she can to help me and finally I’m starting to understand more. Thank you to anyone who spreads awareness of this disease because the amount I have to fight to live up to the expectations of others who don’t understand ME is crushing. Teachers can’t understand when I can’t hand in homework. Friends can’t understand when I can’t go out. It’s getting a lot better for me now and I want to let anyone else struggling with this know that it can get better! People will listen if you give them time! You are so strong! Keep fighting because you deserve a happy life :)
My 19yr old got ME from a very mild covid infection. In the US doctors don’t understand it and people don’t either. She falls asleep at work even after taking adderall. It’s very hard to be young and have this and no one understands
I’m 22 with ME/CFS, and it’s heartbreaking seeing my peers working and traveling all the time when I’m mostly housebound and going to get groceries is too much some times
I'm only 4:10 into the video and you already have me crying. I've never heard it explained so well. I always get the "you've been home all day, I've been working, I'm more tired than you" or "We all have aches and pains" or "You just didn't want to remember because you didn't want to do it. You just have selective memory"
Wow, that sounds so incredibly invalidating. I'm so sorry. Your illness IS real and they have no idea what it's like. This was never a choice you made.
Thank you so much for enlightening others and spreading awareness. I have been suffering from ME/CFS since 2016. My symptoms have digressed from severe to mild, but every day is a struggle. This Monday, I'll start medical school in the U.S., and it will be an honor as I'll advocate for others suffering from this illness.
I have had moderate to severe ME since I was 12, though I was only diagnosed last year at the age of 20. I've spent 8 years being unable to go to school and fighting the medical system full time. Most of my doctors hadn't even heard of it, and the ones the had dismissed the possibility of me having it. I had one doctor tell me that it was hard to diagnose, therefore I don't have it. I finally got lucky and found a wonderful doctor who after only a few appointments told me I met all the diagnostic criteria. While things are still hard, I can finally access the support and community I was denied for so many years, and I'm thankful for that.
A doctor said I couldn’t be diagnosed with CFS because my symptoms had lasted too long. I thought, “Or I had CFS all that time and it was undiagnosed!”
Thank you for saying being I'll sucks. No, really. People without chronic illness never seem to get that it really sucks, we do not enjoy this, nor the attention it brings. I really appreciate all you do for the disabled and chronically ill. Thank you.
this video made me feel so seen i cried. thank you so much for talking about it
🤗
Thank you for partnering with Solve CFS to bring awareness to this illness. I am not a sufferer myself, but several family members have been affected by varying degrees of M.E./CFS. Also!!! I’m so glad you are referring to this disease as ME; it’s so much less stigmatizing than “Chronic Fatigue Syndrome,” which really is too much information for some people whose only business is to know “I have a condition, and I want you to know that I have some limitations. Please respect the boundaries I set for my health.”
I have moderate ME/CFS and last week I was in a specific clinic for the first time after 8 years chronic illness. In this clinic I was so happy, because they believe me the whole time and I don't have to hear these horrible things Like "It is all in your head!"
As someone with moderately severe ME I just wanted to say thank you for helping to educate people about it. There's so many misconceptions & so much misinformation out there about what ME is that I'm often afraid to even tell people it's what I'm diagnosed with. People, and often even doctors, don't realize how disabling it truly is. Because of that every bit of accurate information put out into the world is so incredibly important to me & others dealing with this illness.
Hi Cassius, thanks for your comment and I am so pleased to have helped in any way I can x
I was diagnosed with ME back when it was called Royal Free Disease. Started with severe, spent over a year bed ridden (there went high school). Over the decades severity has fluctuated and suggested treatments have changed, as has attitudes of doctors. Both my kids have developed ME following medical traumas, but getting a management routine in place quickly has dramatically improved their recoveries and limited the severity. But it took months to get each of them into the one person on our side of Australia who sees members of the public for assessment. Thank you for doing this video. It meant so much to have someone speak what we go through, and for me that's especially the sleep thing. I was sitting here saying "YES!" Knowing other people know ME is real makes such a difference.
Currently on the kitchen floor crying because I've had med sensitivities for years, it's become a joke that I just get the worst side effect from everything, and I had absolutely no idea whatsoever that my ME could be a factor in that. I really wish doctors were more well versed in this condition, thank you for spreading the awareness that you do
I've had it for years. I'm sick of dealing with it, and I'm very much done with people treating me like it's not a real illness. Thank you for speaking about it, these comments (and your video) help me feel less alone in my experience.
Thank you for this video. It will be so helpful to share with my parents and friends who don’t get it! I’ve been struggling so long with getting a correct diagnosis (I also have hypothyroidism 🙄) but I’m a healthy, fit young woman with a job and pets and extracurricular activities and I am sleeping 12-14 hours every. Single. Night. Not just one or two days a week after “partying”. Every. Single. Night. Sleeping is what I look forward to all day. And after half a day of sleeping… am I awake and alert? NO, my brain is just bored or sleeping. Sometimes I even need an energy drink in addition just to stay awake during enjoyable activities (though I normally refrain from any caffeine or sugar if I can). I’ve almost fallen asleep driving or working and I can’t even read (which I love to do) or watch tv without falling asleep. I’m so tired of being tired and sleeping over half of my life away. And then I’ll get a burst of energy at 1am and I know I have to clean my entire house at that very moment because as soon as I’m done, I’ll collapse and sleep for sixteen hours and not get anything done when I wake back up. I can pinpoint exactly when it started exactly fourteen years ago and I’ve never felt awake since.
I also get sleep-drunk like you!
I cannot express how infuriating US healthcare and insurance procedures are. It’s been months of being misdiagnosed and sent in circles, “you’re just pmsing”, go to this specialist, this specialist isn’t covered, we don’t take your insurance but we didn’t tell you that so here’s a $2,000 bill for a single allergy test, go back to your regular physician and get another referral, your regular physician is booked…. And on and on. But thank you for giving the proper medical name so I can go in and ask about it instead of “chronic fatigue” and being told “you’re young, just wait until you’re old! Then you’ll know what being tired is!”
A very long comment to say thank you; I feel heard.
In the subtitles of this video at 3:34, Jessica says “800 times” but the subtitles say 88, just thought id make a note of it to help! So grateful you’re talking about this!
Thank you so much for this, I've had ME for 13 years now progressively going down the ladder to severe. I am trying to stop going down further as very severe really scares me but I just have no idea what to do exept pacing, we definately need more funding.
What surprises me are the amount of celebrities who had systems of CFS but were never diagnosed due to the times they lived in. Marilyn Monroe, Elvis, Vivien Leigh, and others all had clear symptoms and other underlying conditions but those conditions were either not taken seriously, or weren't studied yet.
It took 15 years for me to be diagnosed with CFS/ME. It's now been 24 years. Even with a "mild" case, I can't work. No-one, not one family member, not one friend and no doctors listened to me and believed me. People love to tell me "you look good" as if that cheers me up. I'd much prefer to have a "visible" illness so that the years of gaslighting and shunning wouldn't have happened. ME is bad enough without having the people around you ignore and shun you. My family has never once asked me about my symptoms. I made flash cards to help them understand but not one was wiling to read even one card. The invisibility of this illness is torture.
I cried when I watched this video. I have struggled with prevalent exhaustion for over 15 years. So many doctors have either ignored my complaints or blamed it on a vitamin D deficiency despite treatments for that doing nothing to alleviate my struggles. It got worse after I had my son 6 years ago and worse still after I got covid at the beginning of the year. I am hoping in the new year to get some help from a new doctor.
I'm not sure if I'm dealing with ME, but with being a complex patient for 8+ who still doesn't yet know what all is going on in her, this video makes my heart feel heard. Thank you for sharing your voice on what it is like to battle chronic illness. ❤️ It inspires me so much to do the same.
I haven't been diagnosed with a dang thing, but I have so many of the symptoms. My kid has *so very many* symptoms as well, but severe. They haven't been diagnosed, either, but I feel like it's only a matter of time and a doctor who's aware. Thank you for sharing this.
I took care of my parents for a couple of months after they recovered from Covid. They had pretty much all the symptoms Jessica mentions in the video. It was a dark period for our family. My best wishes to ME sufferers.
My Mom has M.E. It affects her pretty severely but she's an absolute badass and fights through it every day.
Bloody Brendas! Great video. I have MS so can somewhat relate to misunderstandings of invisible energy related illness. Much love to all the Folks with ME. Thanks Jessica xx
wow, i really like your explanation of psychosomatic, it almost made me not hate the word anymore. it's way better than the doctor and my mother and sister telling me (for months) that all my pain is psychosomatic meaning it's just in my brain and i need to get over it and stop acting up for attention and if i walked more and be happier, stress less and sit more with my family and spend "good times" it would go away.
just to explain with one example, at that time (and even now though i don't talk about it) i couldn't walk properly and when i would go for a walk at the park i would be almost fainting (in 15 min) and come home completely wiped and in extreme pain.
Thank you for doing this. As someone with severe M.E. it was super handy that you had done such a brilliant breakdown I could share, saving me the brain and energy needed to explain it myself xxxxx
Hi Jessica! I'm a young person with mild ME/CFS. I really appreciate this video and will definitely be recommending it to some of my friends and family. (I also know some Brendas)
Just letting you know that the UK Government announced a ME/CFS delivery plan on World ME day (12th May) this year! They have committed to improving care and support for people with ME and their families. This is an important step towards gaining better understanding of ME, *if* the UK Government can commit to this action plan. Although, there's still a long way to go!
Thanks for reading x
I have severe fibromyalgia which exploded after a year-long migraine the fact that these medical issues have no defined test is heartbreaking, I have lost my kids, my job and my apartment I want to be working but I almost can't read anymore. I accepted I was disabled last year and applied for social security. I really don't want to be sick I want to be better I will recover I am not giving up, I am going to keep trying new treatments until I find something that helps me. thank you for making this, hopefully, change will happen and we will grow past this.
As someone who is currently going down the CFS diagnosis route- thank you for this video! My mild symptoms have unfortunately turned moderate this year. I am lucky to have one or two “good” days per week, but the other 5-6 are spent in bed unable to do anything. I hate living like this quite often- I just want to be able to have a job and do more things, and it’s compounded by the fact that benefits in this country are truly awful.
Thank god i only have mild ME/CFS now. It’s great to hear someone talk about it and share it with the world so a big thank you
Please take good care of yourself and pace yourself (from someone who went from mild to moderate due to bad medical advice).
@@dfjulesful Ditto to this!
i’ve been diagnosed twice with moderate ME/CFS thankfully now only mild and back at work. I now have the knowledge of what to look out for to try and keep it that way
I have moderate ME/CFS (but i fluctuate both to mild and severe depending on the day) as well as ehlers danlos. I love that you are making these videos, as this channel has been instrumental in helping me to better accept my diagnosis. Unfortunately, my diagnoses were a journey in medical bias, so I have a lot of trauma in regards to the belief that fatigue is something you can just ignore/work through, but with more and more education on the topic arriving, I have hopes that my experience will not be repeated. Thank you for sharing, the need for people with ME/CFS to be treated with the respect and care they deserve hopefully will increase with main stream exposure!
I do not have ME, but I have something I consider a disability ( since it impacts every aspect of my life) : hypersomnia. Before getting treatment, i was mistreated so bad by all the people around me, because I was sleeping too much, doing too little, "what are you doing at night if you went to bed earlier you would not need sleep in the day "... I was so ashamed of myself for falling asleep in Broad daylight, and then ,the diagnosis. It felt so liberating to know what was going on with my body.
From what I got from this video, people with ME also suffer from this type of fatigue, and worse. I see you , I love you and I hope every thing goes better in your life !