The Most Prevalent Illness You’ve Never Heard Of! // Severe ME/CFS
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- เผยแพร่เมื่อ 4 ส.ค. 2022
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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.
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.
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.
My partner had ME in the 1980s when it was called "Yuppie Flu" and was assumed to be psychosomatic. We saw many doctors and ONE knew it was a real thing and helped us do research. If you ever find a doctor who listens...hold on to them!!
How are they doing nowadays?
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.
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.
My sister has ME. It makes me furious when people don’t take it seriously, especially medical professionals.
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 !! 💜
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!”
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!
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
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.
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.
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!
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.
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
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 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.
I was diagnosed with chronic fatigue syndrome and fibromyalgia when I was 19 I'm now 40 and all not taken very seriously. I had to fight for pain medication because I'm allergic to do many meds Drs think I'm lying when I say all I can take is a mild opiod which is funny because I've made it very clear that I'm also allergic to stronger opiods so I'm not drug seeking. It's a literal nightmare. I can't work and when I do that's all I can do.
I absolutely hate the way that the opioid epidemic has affected those who actually need the medication. I used to work as a pharmacy technician, and unfortunately, this is far from the first case I've seen/heard of where patients in extreme pain have struggled to get pain medication. It is also stupidly easy for someone to be marked as "drug seeking" due to unfair or discriminatory opinions of pharmacists and doctors. It is wrong. Your struggles are valid and I hope you receive the care you need. I wish you the best ❤.
Being allergic to opioids is the absolute worst. Especially with how dependent healthcare systems are on them due to how useful they are in the majority of people who can actually take them. Getting decent alternatives for pain management is a nightmare.
Not to be intrusive but how did you get diagnosed with both fibromyalgia and ME. I was diagnosed with fibro but even before I had that I been dealing with for years extreme tiredness that no one has taken seriously. I definitely have the you do something and then you wake up the next day or 2 days later and are way worse. I feel like every symptom just gets applied to fibro.
Why do people hate drug users more than they love disabled people :/
@@kikicogger2284 thank you so much. I really appreciate it 😊
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.
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!
Hey Jessica, could you make a video on FOMO and disability? It is a topic I am very interested in
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 have chronic fatigue. I'm diagnosed w MS, but been told that my MS isn't progressed enough to explain my fatigue, but I also can't be diagnosed w ME bc MS is one of those diagnosis that has to be ruled out to get diagnosed w ME. I'm currently looking into the possibility of having EDS, which I know gets misdiagnosed as ME sometimes.
Due to my fatigue, I had to move back home to my parents, my bachelor is basically on pause, I'm working from home as a student assistant for 13 hours a month and even that sometimes hits my limit. I often can't shower, have unwillingly lost 20kg because I can't eat, sleep doesn't help, I'm almost always dealing with brain fog and being dizzy, nauseaus and having a headache is the baseline.
Still, I have ppl tell me I just need to be more active (makes it worse), go outside (makes it worse) or that I need to lose even more weight. And then, of course, if I have ever considered if it's psychosomatic (I have. was literally my first idea. My psychiatrist and my therapist, both of which I've been working with since before my fatigue, have ruled that out.)
Every new doctor I go to basically tells me the last one I've been talking to was wrong, and/or claim I got it wrong, had to have misunderstood something. I'm just trying to find answers, but have been told I just "want more diagnosises". I don't. I want one that explains what has been going on.
I have a great support system, but even with that... my friends often do things I just can't join, I'm financially completely reliant on my parents, I have no way to plan my future (and am sometimes not even sure I have one), I just sit in my comfy chair at the window all day and if I'm lucky, crochet a bit.
Some doctors, medical professionals, have outright said they don't know anything about ME or chronic fatigue in general. I prefer those to the ones who say I must just be depressed. I feel like I would need the energy of a healthy person to be able to manage all the doctors, all the contradictory information, and get actual answers.
I need more awareness, more research, into ME and chronic fatigue in general. I'm a happy person, with many plans and things I want to do. I want a chance to fight what it is that robs me of the energy I want. I'm gonna keep fighting for myself, but I wish I could fight my actual problem instead of the medical system and the misinformation first.
❤️
Your life situation sounds so familiar. I had to quit school after 7 years of working towards my degree and nearly being done and move into my parents' garage. I don't work and don't have money. My family has a very toxic dynamic and I'm exposed to a lot of ableism and don't get much support from them.
My doctor seems to think it's a mental thing. I've been telling doctors for two and a half years something is not right with my brain and body but haven't gotten much support or assistance from them, much less answers or diagnosis.
@@MadCheshireHat im so sorry, that's such a rough situation. If you can, somehow, try changing doctors. And if you have any theories, claim another medical professional gave them to you (my primary care physician immediately agree to send me to a genealogist to test me for eds when I told him an endocrinologist had told me I should get checked out for eds, which isn't directly a lie, I just hid I brought it up at the Endo)
I truly hope you find answers, solutions, and a better living situation. I hope you get to chose to surround yourself with people who support and believe you.
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 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 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 !!!!
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
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.
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!
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 have this. Comorbid with fibromyalgia, chronic migraines, chronic myofascial pain, bipolar disorder yada yada yada. Wheeeee!
It's scary how close to MS ME is. I'm going to bring up me to her since we can't find lesions in my MRIs but I'm being treated for MS right now.
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!
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.
I’m pretty sure I have the least severe version of ME and I could never imagine it being worse than this.
I don’t have good rest and I’ve recently been struggling with malaise and brain frog lately. I do work. But I work from home. Today I’ve struggled to get out of bed. And every time I stand, my legs tremble. I try to sit up and I slump over. I feel like a baby. I recently worked over 130hrs in two weeks. Needless to say, I pushed myself too far. But even before that, I can’t sleep more than 4-5 hrs. And I feel drunk ALL THE TIME.
I have chronic fatigue and pain, fibromyalgia, and hashimotos thyroiditis. I've been fighting for years to get testing for M.E. here in the US and have symptoms of the illness since I was 14. Explaining to able-bodied people what it is like to live through chronic illnesses can be frustrating and demoralizing. Thank you Jessica for dedicating time to educating those who may be unaware of what chronic fatigue can do to a person mentally and physically.
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 three separate incidents of CRPS the longest being the current one that’s lasted 15 years now. It’s hard to explain to people especially those who keep asking me ‘Did you know your foot is purple? You should see a doctor for that.’ I’ve taken to explaining that ‘my brain doesn’t know how to shut off the pain response to minor injury and gets stuck in a never ending loop of constant pain’ It’s also fun in that any treatments tend to work on only a few people and the first leading researcher for a treatment plan for my condition is currently (last time I checked) in jail for faking his research….
I have chronic migraine and that's debilitating enough on a daily basis but I can't imagine how much worse it could get for some people..
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!
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
This is the one video about a condition where I think "Oh... that might be me."
I always joke about never sleeping because it seems not to make a difference how long I sleep. I can only stand for a limited amount of time before needing to sit down, I'll do an activity and somehow be more out of energy a couple days later than at the time, the list goes on.
Edit: I took the quiz and was told I "very likely" have it, looks like it's time to take this to a medical professional.
Wishing you all the best! I hope you're able to get some help =)
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'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.
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.
Great info! My CFS seems to be either caused by or made worse by hypothyroidism and low cortisol. Definitely makes you feel that life has left you behind. 😕
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!
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!
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 was diagnosed with ME 12 years after my symptoms started...until then, I was told by medical professionals and family etc that I was imagining it/lying/dramatic/lazy etc. Even though that diagnosis was 7years ago now, people still insist that it's not real or that I'm making it up etc. I was housebound for a few years and just recently started improving so the only place I've been in about 5years is my dogs vet (she had surgery after hours and they let me nap in the waiting room because I couldn't get home and back) and hospital (started doctor home visits at age 26, after a lot of debate with the staff about not being elderly but still needing this). I spend every Christmas/birthday with just my dog at home because my families don't understand. I've been yelled at by multiple medical staff for trying to postpone appointments or for "being drunk/on drugs" because I'm disheveled, slumped over and slurring my words in the waiting rooms, I started asking them to drug test me because they never believe that I don't drink or take drugs.
I've selfishly enjoyed the pandemic because there's more services that cater to people staying home like phone appointments, more delivery options and less judgement. The pandemic also has had healthy people at least consider what life would be like if they're stuck home sick and some of the people that used to tell me that I'm lucky to be home and not working have realised it's not fun and have stopped saying these things and asked me for advice for managing isolation.
This year I left to live on my own with my dog for the first time and I've been doing better because I can rest in the dark and quiet as soon as I need to without being questioned or disturbed, I can do everything at my own pace without having to work around others and I'm not worried about masking my symptoms to avoid complaints, judgement or the genius suggestions of yoga/diet/just stop being tired. I'm hoping I will keep improving, but if I don't, I'm at least content to be better than I was and every day I appreciate that I can take my dog for little walks each day (she's tiny so we just do a few slow and short walks and she does her zoomies in the yard or park)
I'm between moderate and severe ME and it first appeared REALLY mildly after I got mononucleosis in middle school, then triggered to the current severity after a severe infection in college. I got sick so young I feel like I've had to mourn the life I could have had had I not gotten ME. Doctors encouraging me to push myself beyond my limit before we knew I had ME really didn't help thing either.
Hi, I'm a fellow mono/ME buddy. I got weirdly excited when I read your story. I had mono "for a year" in middle school, was further triggered by high high stress in high school, and became basically housebound after pushing myself and being super stressed at my first "real" job, even though it was part-time. 10 years later I'm psyched to be starting my second "real" job. Doctor's have not been very helpful.
It is strange to not know what fully healthy or normal energy is like. Best wishes to your health journey!
-Lynn
I love how they described you on their website as an 'icon' and 'advocate' and referred to your beautiful style, glowing sense of humour and stunning intellect. There was no hint of 'jessica with x,y,z disabilities'
This was a marvellous partnership.
It doesn't matter (shouldn't matter to you) but I am incredibly proud of you and grateful for all you do, Jessica xxxx thank you xxxx
That moment when you have the symptoms and would like to get diagnosed but is too tired to even try 👍
Undiagnosed because of my extensive mental health history. Despite making significant progress with my depression over the years, the fatigue remains consistent and severe. I'm 29 and I can't do anything my peers can do. It's lonely and embarrassing.
On the bright side, I did win my court appeal for Social Security disability, meaning I have a meager income and health insurance without a job. I absolutely can't work a job.
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.
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.
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 :)
this video made me feel so seen i cried. thank you so much for talking about it
🤗
I had so much energy Monday, it felt amazing and I got a bunch of chores done. But as a result I am *still* recovering on Friday. It also dawned on me that what felt like a huge surge that I haven't felt in months if not years, was very likely the amount of energy *normal* people have every day! I have asked for a diagnosis but it is a struggle to be heard, and even when I find a doctor that will listen, they don't always know who exactly to refer me to for a diagnosis. It's an exhausting struggle for someone who's already always exhausted, and I just want help.
I had no idea that chronic fatigue syndrome had been renamed or that medicine had discovered several types of it.
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.
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 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.
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 a close family member whose ME is currently either mild or in remission. It was moderate to severe at its worst...and it was so scary to see. They had issues with breathing sometimes, had to have support to walk, had severe fatigue, etc.
Being diagnosed with autism, depression, anxiety, psoriasis and POTS, having suffered through several winters of untreated probable flus and/or pneumonias during my teenage years due to parental neglect (medical friends I describe it to now say I could've died, and I thought it was simply severe colds), aaaand having joint issues possibly caused by EDS, it's always so confusing to learn more about M.E ;__;
Like, I'm currently absolutely floored and have been for a week after doing intense volunteer work (NärCon!). I feel dizzy, I guess? Or is it dizziness to feel like there's carbonated fluid in your face and hands? Is that low blood pressure? I wish doctors would know. I wish I had words to describe how I feel. I love being active, I love working, I love my orchestra - but my body and brain keep shutting down.
...long rant over.
I'm in a similar situation with diagnoses! And I had chronic sinus and ear infections as a kid. My energy is wiped just doing the things other people do in their day to day life. Volunteering just for a few hours makes me need several days of recovery. I'm at a loss though if it's those other things or if I also could have mild to moderate ME/CFS.
wow not one but TWO people who also felt that!! I’m literally not even done with the video, just at 3 minutes and she just listed all the ME symptoms and I’m like “maybe there’s a comment where someone got to explain how there’s a difference between that and having dysautonomia + migraines + autism??????” glad there are two other people who at least felt that tho XD
For me though I’m pretty sure I never had a sever illness as a child…. Or did I? I have so many blacked out memories due to dissociation that started a few months chronologically after I was old enough to start actually forming memories I COULD remember??? And actually for unrelated reasons I’ve been trying to look into things I came down with when I was younger because a doctor told me it could explain some of my symptoms or could mean I have lyme disease for real-
I guess it’s a good thing to possibly find another label with a possible explanation behind it, though 😞 just so tired of looking for a starting point lmao
also tho I’d like to third the “my body and brain just keep shutting down” because I AM an active person, but any of my close friend or family know that it’s time to head home when I start saying “I’m crashing” because I WILL just crash and have to take a nap right where I’m at and sometimes, that’s outside and I get sunburnt, and sometimes, it’s a hot car and my brother comes out to me and is like “um were you trying to die of heat stroke” and has to shove or help me inside -_- so like, you know, in case people were wondering if we really do need to take a rest or stop the activity or not start in the first place because we know our limits, or if we were “””””exaggerating”””””.
Me too folks! Yes, that carbonated water feeling is blood pressure related. It also happens in my face, hands and feet. For me it happens from blood pressure changes, like when I stand up or walk up stairs. ME does sound very similar to my experience , but I have POTS, so I faint sometimes too. Neurodiversity for the fun of it!
You should know that psoriasis is systemic and not "just" a skin thing and that it could be the cause (or a contributor) of your joint issues. You'd think doctors would point this out but... well.
Maybe you already knew this but in case you didn't.
I have mild CFS caused by thyroid/anemia issues, and I get dizzy because of the anemia. If you haven't it's worth taking a blood test to make sure you aren't deficient in any category. My grandma used to be dizzy because she had issues with her ear, so it's worth looking into seen if one of your diagnosed diseases can cause issues with your ears or maybe ruling out issues with your ears as a cause for dizziness.
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.
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.
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
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 suspected I had ME for years, before I started medication for my depression. I still deal with many of the symptoms, but turns out I just have the perfect cocktail of mental conditions to cause physically disabling symptoms.
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've been trying to find an "underlying cause" of my Pots/Dysautonomia, for quite awhile now. I fit a lot of these symptoms except for joint and muscle pain that's unexplained (my legs get sore from blood pooling). I don't have swollen lymph nodes either. Diagnosis is so confusing. I currently have an appointment with a biochemical team, I don't even know what they do. I just want to get back to hiking and living my extroverted life! Using mobility aids as a young woman is also incredibly embarrassing. Thank you for telling me about CFS/ME!
Never feel embarrassed for using a mobility aid.. If you need it, use it. Have you seen how stylish Jessica looks using hers. Any aid can be "customised" stickers, lights, even elastic bands on handles so it can be grippiyer when wearing gloves makes it yours and therefore an extension of you and your style. Be brave, take a deep breath and sod the lot of 'em attitude.
@@juliacooper9145 I appreciate the support! I never pick out a mobility aid that's ugly or medical looking (: 3 beautiful canes and a sparkly blue walker are my best friends
I totally get the sore from blood pooling thing (it's very annoying and people don't seem to realize how painful and disconcerting it can be), and I also get the struggles using mobility aids as a young person. Especially older people can ask some really weird questions when they see someone as young as me using a mobility aid, which can be very tiring. I've definitely become more comfortable with it especially since I've been able to experience greater independance and freedom by using them. But decorating and personalizing them helps quite a bit, too
I've been suffering from extremely severe fatigue ever since I had a severe infection as a teen. I'm now 30, can't gain energy from sleep, can't do anything without feeling awful, suffer from memory loss, brain fog and disassociation, etc. All I hear from doctors is "oh i slept badly at your age too! You're fine!" or "these are clearly symptoms related to your autism/depression, you're fine." Meanwhile it's just getting worse. I have to plan going to the grocery store because I know I'll need at least a day of rest afterwards. I don't know what's wrong with me. According to doctors it's nothing, according to family it's "being lazy (and fat)." I've tried literally everything and everyone's advice. My previous doctor has been barred from practicing because he's a covid denier. I hope the next one will be all right.
What you said is really helpful: 'if they say it's all in your head go to another doctor!'
I wish I had done that and probably could've gotten diagnosed years ago rather than only trying again when the pain became too much.
Yes, same here!!
Woah, I need to talk to my doctor
Thank you so much for this video ❤️ I have moderate M.E. (and fibromyalgia and TMJ disorder) and have found it incredibly isolating. Trying to do activities that make life worthwhile can just take everything from me. Learning that my mobility aids and reliance on people around me is nothing to be ashamed of. I first got ill 20 years ago and I STILL have a lot of internalised ableism, but seeing other people talk about their disabilities and chronic conditions help so much
As someone currently dealing with Long COVID and attempting to discover the source(s) and/or possible treatment(s) for my symptoms, many of which you discussed in this and other videos, I can’t express how grateful I am to you for making these videos. Having “invisible“ symptoms can be difficult, especially when those you are turning to for answers just shrug their shoulders and tell you that you should be ok. You do such a beautiful job validating and bringing awareness to something that can so easily fall through the cracks. I am so fortunate to have an incredibly supportive husband and children, but hearing from someone else who has had to fight for a diagnosis and medical support makes so many of us feel not so alone during such a potentially isolating time. Thank you!
I'm sorry you're going through this. I also had long covid and managed to recover but am now going through it again after getting COVID a second time 😭 highly recommend Raelan Agle's channel, there's loads of recovery stories on there and it has helped me so much
@@Hannah-dr1rl I’m so sorry to hear that!! And thank you so much for the recommendation!! I just created a whole playlist. I hope you feel better soon!! It sucks that you are going through it all over again
I also ended up with long covid. Just joint pain. I noticed that taking allergy meds with my pain meds improved my joint mobility. I even ran a test on myself and suffered through the allergy season for a week. Taking both had pretty good results but taking only one or the other was a mild improvement. Not sure it works for everyone but so far it makes movement bearable for me. And when I stopped for 24 hours I was back to not being able to open doors or tie my shoes.
I’ve had ME/CFS since I was 15 (am now 28) and it took a very long time to get a diagnosis and for people to take me seriously about it. Mine is classed as mild but it does fluctuate to moderate quite often, and it is completely debilitating. Thank you for posting about this because I find it so difficult to talk about and explain it!
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.
As another CFS sufferer, getting a diagnosis was a nightmare
It was actually my therapist who told me about it and suggested I get checked. My GP told me it's not real, and if I did have it there was nothing that could be done.
6 years later, around 7 months of being wheelchair bound in school, lots of bullying and misunderstanding, I'm able to listen to my body and get the help to control my symptoms as best I can😊
Thank you for bringing awareness, especially when long covid is so similar, hopefully we will get the help and recognition we need
Moderate me doesn't seem bad enough to describe my life, unable to work so poor, unable to do fun things, family affected, thank you to all who at least try to understand
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
I’m currently trying to get a diagnosis for what I think is mild ME, but I think it was severe at the beginning of the covid crisis and that was both the best and the worst time. On the one hand I could talk with my friends while laying in bed when I was improving a bit, but the general attitude of “what am I supposed to do all day when I can’t leave my house” hurt so much because there were so many things I wanted to do inside the house, but just didn’t have the energy for
Thank you for making this video Jessica. I have moderate/severe ME and went from being an active 24 year old who ran half marathons and cycled everywhere to being mostly housebound and needing a wheelchair when I go out. It’s been many years now and I’m still not improving despite trying as many treatments as I could in the time I’ve been sick. Thank you so much for helping to raise awareness, so many people either don’t know what ME is, or have the wrong idea about it
I'm so happy you're talking about this ❤️ this is very misunderstood.
I was diagnosed with CFS at age 15 or 16 and it is lonely and especially also having long covid, it really sucks! This video hit home and I'm glad I'm not the only one going through every symptoms on that list every day of my life. Its progressed for me. I will probably post something tomorrow! Thanks for the heads up about me awareness day!
There’s a movie on Netflix called “UNREST” and it’s about ME/CFS. I watched it and related to it so much, even though I don’t have that diagnosis. I’m a TBI Survivor, but I can relate with how she was talking about her feelings of loss. Great movie. 10/10 would recommend. 🍿
Thank you so much Jessica for talking about ME, we do feel 'overlooked' as you said, despite being so unwell. I really appreciate you spreading awareness, it means so much #thankyou
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.
I mean the upside of long covid is hopefully more research into these symptoms? Good PR moves and all that *gags* I hope you're all having an okay day ❤
My ME/CFS is most often mild. I don't have too much more to say that wasn't addressed in the video. It just really sucks to keep being told I have depression when often I don't feel sad or doomed or meet any of the criteria not related to energy. And when I do feel that way it's only because I feel overwhelmed. Everything piles up over time and I know I can't tackle it. I watch other people who are elderly or injured just get up and move things for a few minutes and can't comprehend how it's possible they manged half that work when know I couldn't have done it in the same amount of time. And it's not like I can just ask someone else to regularly clean my house, or afford to have it done. So it just gets worse and worse until my conditions are past livable.
I got a severe depression after my chronic illnesses (which we thought was ME/CFS and fybromyalgia) got a lot worse... It's been 5 years, and with me finally getting in the process of getting the right diagnosis, my depression has slowly gotten better. The effect of physical illness on mental illness/health is so significant, and often overlooked. Or the physical symptoms get blamed on your mental illness. I'm so happy to finally be finally getting better, for example, by starting to figure out what my triggers for both my mental and physical health are... But it's been a journey, and not a great one at that.
I just wanted to let you know that we are her for you, and we see you.
so many people told me i was faking my illness growing up that now when i’m much better, i start to believe them. this condition is debilitating and lonely. thank you for raising awareness and helping me accept my own trauma
Thank you for this Jessica. Your medical videos are my favourites. I've felt so much encouragement from them in relation to chronic fatigue, migraine and all things Ehlers-Danlos/HSD. I also enjoy seeing your beautifully styled outfits - they're good for the spirit. Very glad I found your channel ❤️
One of the last big steps years ago when I was being diagnosed with Fibromyalgia was figuring out whether I had CFS (ME now) or Fibro. I didn't realize you could have both. So that's interesting.
It's nice to hear to hear another person talk about time and effort to get ready and not going anywhere alone. Getting ready takes hours 🤦♀and requires water breaks- it feels absurd when I put it into words. And I don't think I've been out alone in the past 5 years; I definitely can't remember the last time I drove alone. hm.