What's wrong with ME? [CC] 

Let's be real, her hair is always fantastic

@@heatherspill5817 oh, 100% It is literally a wonder and I live in happy jealousy of it!

I am so jealous of her hair 🙂 I cant do anything with mine lol

@@franlats0705 I feel the exact same way!

The little bun (looking things) so cute

Right?

Not only that but also her looks

Sending you love and hugs as well ❤

I'm sorry that was your experience and that it so often happens that way. It took 6 years for me to be diagnosed because noone would listen and by then I was already in the 'moderate' mostly housebound stage. And the supposed experts recommended GET and CBT. Thank goodness I already knew how damaging GET is so I refused that part. I was already seeing a therapist (for mental health issues) but CBT doesn't cure M.E. It only helps people cope with the depression that inevitably follows. It's all so backward! I'm now in the severe category where I'm mostly bedbound. I've been ill a total of 13 years now. Not exactly how I thought I'd be spending my 30s! We need funding and medical professionals that actually understand us.

i understand the struggle! i have ehlers danlos syndrome and doctors only want to treat me with exercise, and it really only makes things worse..

adoptingjoseph yup a lot of the time doctors can’t help with things they don’t understand...

😭

Drs kinda suck at times. I keep having blood tests and have had genetic tests which show a big fat 0, funnily the hypermobility or heds gene has yet to be found so genetic and blood tests wont help. Them listening and doing research however might help haha Hope they listen to you soon x

@@franlats0705 however genetic testing should be provided to people with suspected EDS hypermobility type in order to rule out other forms of EDS

@@abbiebann2440 they should but I had to fight to get what I did, I'm now 31 and trying to get to the bottom of what has been plaguing me since I was a child.

@@abbiebann2440 I think what I'm.meaming is that repeated testing that shows nothing everytime needs to be looked at and them realise just because they want something to show up doesn't mean it will

This was me with my Lyme diagnosis. Over a year doing the same blood tests over and over. Then I went to a private clinic, got tested through them, came up positive for borrelia, bartonella, and babesia which required a specific test just for them since they don't do anything to show up on normal blood work except maybe some inflammation markers. Which I was later told showed up but it was borderline okay so I shouldn't be surprised it wasn't followed up on.

I am so happy to read that your husband now is in good health ❤ It is crucial for those of us trying to recover to be treated with kindness, compassion and respect. Much love to you and your family.

I'm going to show this to my husband. We are exploring a diagnosis of CFS/ ME and it's really scary for us. He has good days and then some days he's is barely there if that makes sense 😔 but looking at this, there looks to be light in the future. What did he/ you do to help him through this time? Kudos to you for supporting him through this hard time with a young baby! That's so amazing! Again thanks for posting this. It's really helped me today. X

Something Dreadful 🙌🙌🙌

Sending love to you and your mom! I can so relate to other people saying those things. Thank you so much for helping your mom - it means the world to us when we have people help us and try their best to learn and understand. X

Lots of people are abandoned by friends, partners, and family. I call this friend, partner, family flight. I'm glad your Mum has you.

Your experience sounds just like mine. I was 14 too and told to just get on with it, and have done ever since no matter how many times I go back to new Dr's. I've I'd been given proper advice from the start I wouldn't be anything like as sick as I am 20+ years later. So thankful for the internet and chronic illness community too. How I wish it had all been there years ago!

Gigglypeach, STAIRS ARE EVIL My school has an elevator as they are required by law to make the school easy to enter but *they never turned the elevator on* so I cannot use it... thanks school

@@user-ly3pj1yz4l Oh dear, your idiot school! Bless you, hope they sort themselves out soon! My university was the same, I had to get a very kind, tall and strong friend to literally carry me up the stairs sometimes 🤦‍♀️x

yes, they should!

I agree! as a med student this video has given me a whole new understanding of ME, a condition which in the past I have struggled to fully grasp the effects of. Jessica should really consider looking into volunteering as a professional patient to go into med schools to educate on the patient perspective of ME as I'm sure so many others could benefit from hearing info like this! :)

They are starting to ask what have you read about.. and I also use the term when they come after me with dr google isn't a great idea. I also respond drs only study the condition so don't you dare confuse your degree with my lived experience. It's got me most extraordinary results. As well as saying when they say that there is nothing we can do. I ask to see that they where righting it in the notes refusing to treat x condition or refere on. It really does help to make the medical professionals accountable. I have a great wrap around team now.

I can blame me not being a native English speaker on that inability to pronounce this illness but it's not like I can pronounce it any better in the German way.

I quite honestly forgets what its called most of the time despite having it for over 8 years.

I've watched several of Jessica's videos and often thought I have a lot of the symptoms of her condition myalgic encephalomyelitis. Then in this video she said it's called chronic fatigue syndrome in the U.S. and I was like, oh! I think I do have that condition, then. (None of my doctors have ever diagnosed me with it because my fatigue is sporadic and I have other medical conditions that cause fatigue too, but I think I might have cfs).

@@xzonia1 Mine was sporadic for most of my life and then I slid into disability. Many have what appears to be sudden onset and a good number have long-term onset. I wish you the best. You might want to see about getting on a waiting list to see one of the few specialists in the country if getting the diagnosis will help you in any way.

@@IExpectedBSJustNotThisMuchBS Thank you!

Me too!

There are some illnesses that cause isolation, and ME is very high on that list. You are not alone, neither is Layla and Sapphire. We see you, and we are glad you are here.

@@maghouinbeg5011 Thank you so much for your kind and thoughtful comment. This community is so lovely ❤

Can you try using the ME name? I know people with It. They are often belittled because of the name. ( i find because woman have it more, it's more bias towards it) . I have Fibromyalgia. I'm often not taken seriously as being disabled. I also have complex ptsd. Most people don't know that non- soldiers can have it. Mine is from an extremely traumatic early childhood. Unless I go into detail with people who know nothing about mental illness or physical illness ( and how they connect), they often do not believe I'm disabled. But once I go into detail about my trauma ( which I should not have to do to get validation), they often understand why I am sick.

Here too... I started useding ME/CFS and put longer version on forms etc... It helps a bit but still have to explain more commonly known as... Etc

Yes.... tired.... not exhausted to the point of wanting to puke or being unable to get out of bed..... 😕 I also find it almost insulting when I'm so 'tired' that I cant function yet I see every hour through the night. Then if i do sleep my body and mind is like 'haha sucker tricked you'

Honestly sleep does NOTHING... so instead I end up lying in bed doing nothing all day

@@iciajay6891 I have CPTSD too. I hate being told I'm too young and don't have it bad enough.

I totally have the issue with be too tired to talk. I’ll sometimes start a sentence and then a few words in my brain just stops and I don’t have the energy or congnition to finish so I just wave my hands like “forget it” and walk away.

@@librocurious me tooooooo! It's like not only can I not think of how to finish the sentence that I started, it's also really physically tiring to talk, like it's tiring to breathe in enough to be able to talk.

An ex-girlfriend of mine has both fibro and complex PTSD also from her childhood, as well as several other diagnoses. It took her a very long time to get recognition from doctors too. I'm glad you're getting proper treatment now, chronic pain is horrible to live with but PTSD can be worse. Having to deal with both is not a good hand to be dealt. Makes me feel lucky to only have had moderate M.E. in my time. Good luck to you.

I have fibro and cptsd as well. I'm really glad that you were able to find a doctor that hears you and validates your experiences 💜

Another fibromyalgia sufferer here with CFS IBS I hope you continue to get the support you need ♥️

that old doc is a real you know what, I'm glad you switched!

Another fibromyalgia sufferer, I went through an initial diagnosis of CFS, then fibromyalgia as my sister has arthritis and I was experiencing widespread pain along with brain fog and fatigue. I'm now at the point where I tell my doctor new symptoms and she just shrugs it off. Extremities going numb for no reason? You must've been leaning on it. Sensitive to dairy? You must be imagining it. I've kind of hit a wall in my treatment where my doctor hit fibromyalgia and anything new past that doesn't matter

I feel like those kinds of jokes have their..... benefits

Lmao yes

Good ol' POTS, making us feel sweatier than before the shower :)

POTs: making me drip sweat in 45 degree weather 😒

I understand 😭😭😭😭i jave m.e hyper pots and mast cell .showered this morning blacked out luckly got to floor of my bath chair 29 going on 100..... xxx

I was once there and my brain was so incapacitated I'd never have thought of baby wipes and disposable toothbrushes so I could do some self care in bed. And my partner--one who fled--was so not invested in helping, that that person's brain also didn't come up with ideas on how I might meet basic needs like that. Given that you have POTS, it's likely you have low BP, if you are not already consuming salt water or electrolytes, please have your electrolytes tested and read up on this. My very severe symptoms improved over time (to severe to moderate, waxing and waning) with the addition of salt water (I can't use the electrolytes because my body retains potassium--genetic issue--and that would be problematic). Salt in water seems to be the best way to get it; some do better with saline IV a couple times a week (we have blood volume issues), but not all can get that and in the UK it's basically impossible. If you already know this, perhaps someone who doesn't will read this and research on the topic for their own benefit.

Are POTS and ME the same thing? I have POTS but this is my first time hearing of ME

UGHHHH brain fog! I hate it

Sorry you have it bad too 💜 . I'm 90% bedbound. It's tough. Sending you some extra spoons!

ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-KNXwM7U4uNI.html watch this

I was misdiagnosed CFS/ME for 7 years. Well actually undiagnosed for years and then misdiagnosed with CFS/ME. EVERYONE who has this needs to get tested for Lyme disease by a Lyme literate medical doctor. I am sorry for spamming so many of you in the comments with this exact comment. I don't want to offend anyone who has CFS/ME. I was tested for Lyme disease when I first started becoming fatigued and of course, it came back negative. I was also put on antibiotics about 13 times over 2 years because of the frequent infections I was getting; so I thought well if I had Lyme I don't anymore since I was on antibiotics so many times. But the Lyme had already been in my system for years at that point and unless diagnosed early antibiotics aren't going to do a damn thing. I was part of the CFS/ME community for 7 years and I understand how irritating it is that someone on the internet thinks they know what's wrong with you when you know just how many tests you've had done. But I think why ME/CFS isn't getting conclusive results when doing studies is because there are so many of us in this grouping who are misdiagnosed! Also, you know, the lack of studies is to blame. So if you have looked into the things I am mentioning here please forgive me, I just want so badly for CFS/ME and Lyme to have a cure and if we are mixing up the diagnosis then it's going to make it even harder for us to get one. Long story short the typical Lyme test tests for the antibodies that fight against the Lyme bacteria (borrelia burgdoferi) not actually testing for borrelia burgdoferi. There is a place called Ingenix that does a better version of this test but even with that test, I was not CDC recognized as having Lyme. You must have a certain number of markers that come up as positive and I had all of the markers I needed minus one that was not even negative but was indeterminate. So in a sense, I had 4.5/5 positive markers for Lyme. To a Lyme Literate MD (LLMD) that is a positive result as long as you have the symptoms of Lyme. Which are pretty much the same as the symptoms of ME/CFS. To a typical doctor, they just come back and say "It was negative.. again. You know the mind is a powerful thing. Let's try CBT." Get your CD57 tested. Much like people with Aids would talk about having a low CD4, oftentimes people with Lyme have a low CD57. My primary did this test for me so if you can convince someone to do it for you, that is an easier test to do first. If it's low then continue down the LLMD path. If you can find someone who does blood microscopies do one. Mine was filled with spirochetes. This is also another obvious sign you have Lyme, you know, or syphilis. The only two bacteria shaped like this. Look into mold exposure as well. I don't have this but it is something my LLMD tested me for as it has similar symptoms to Lyme and CFS/ME. I wish I could expand on this topic but the brain fog is kicking in. So please if you have the money to do so, get this tested. Look into chronic Lyme disease. Look into late-stage Lyme disease. Look into mold exposure. Watch afflicted on Netflix. I was convinced that I had been tested for everything and I was very much mistaken. If you want to talk more please feel free to reply back to this and I'll give you my email.

I was misdiagnosed CFS/ME for 7 years. Well actually undiagnosed for years and then misdiagnosed with CFS/ME. EVERYONE who has this needs to get tested for Lyme disease by a Lyme literate medical doctor. I am sorry for spamming so many of you in the comments with this exact comment. I don't want to offend anyone who has CFS/ME. I was tested for Lyme disease when I first started becoming fatigued and of course, it came back negative. I was also put on antibiotics about 13 times over 2 years because of the frequent infections I was getting; so I thought well if I had Lyme I don't anymore since I was on antibiotics so many times. But the Lyme had already been in my system for years at that point and unless diagnosed early antibiotics aren't going to do a damn thing. I was part of the CFS/ME community for 7 years and I understand how irritating it is that someone on the internet thinks they know what's wrong with you when you know just how many tests you've had done. But I think why ME/CFS isn't getting conclusive results when doing studies is because there are so many of us in this grouping who are misdiagnosed! Also, you know, the lack of studies is to blame. So if you have looked into the things I am mentioning here please forgive me, I just want so badly for CFS/ME and Lyme to have a cure and if we are mixing up the diagnosis then it's going to make it even harder for us to get one. Long story short the typical Lyme test tests for the antibodies that fight against the Lyme bacteria (borrelia burgdoferi) not actually testing for borrelia burgdoferi. There is a place called Ingenix that does a better version of this test but even with that test, I was not CDC recognized as having Lyme. You must have a certain number of markers that come up as positive and I had all of the markers I needed minus one that was not even negative but was indeterminate. So in a sense, I had 4.5/5 positive markers for Lyme. To a Lyme Literate MD (LLMD) that is a positive result as long as you have the symptoms of Lyme. Which are pretty much the same as the symptoms of ME/CFS. To a typical doctor, they just come back and say "It was negative.. again. You know the mind is a powerful thing. Let's try CBT." Get your CD57 tested. Much like people with Aids would talk about having a low CD4, oftentimes people with Lyme have a low CD57. My primary did this test for me so if you can convince someone to do it for you, that is an easier test to do first. If it's low then continue down the LLMD path. If you can find someone who does blood microscopies do one. Mine was filled with spirochetes. This is also another obvious sign you have Lyme, you know, or syphilis. The only two bacteria shaped like this. Look into mold exposure as well. I don't have this but it is something my LLMD tested me for as it has similar symptoms to Lyme and CFS/ME. I wish I could expand on this topic but the brain fog is kicking in. So please if you have the money to do so, get this tested. Look into chronic Lyme disease. Look into late-stage Lyme disease. Look into mold exposure. Watch afflicted on Netflix. I was convinced that I had been tested for everything and I was very much mistaken. If you want to talk more please feel free to reply back to this and I'll give you my email.

Sending you love ❤ It really is a shitty illness, but we are here with you. You are not alone. Do not lose hope.

tove_ sofie Thank you ❤️

Amelia Erbs this was me too...

Oh my God thats the perfect description! I've never been able to put it into words!

Ditto!! I have mild to moderate and it is so frustrating sometimes!! I've been so lucky that I've been able to go to a school for special needs so I've been believed the last 5 years but I've had some bad experiences too

..oh n o

My name is Jessica and my mum's name is Janet lol

@@jessicahoward9046 So you can relate!

I imagine that "Janet" is the equivalent of Bob Ross's cabin in AK

Lmfao my go to is “Karen” because Karen was my racist homophobic neighbor. 😝

Same. I don't have a diagnosis for anything but I understand you. I sometimes (a lot) get this feeling were it is like EVERY cell in my body weighs ten pounds each.

@@rhiannon1833 I've just now gotten my doctors to realize I'm not faking it, I'm in the process of getting diagnosed with EDS

Same here! It's so hard to explain to people what it feels like.

I liken it to feeling like my cells have all been filled with lead. It’s not just my organs, it’s all my soft tissues. Alpha Lipoic Acid has really helped though, 600mg 2x/day with food on the advice of a new(ish) doctor. It’s still there but dramatically better since starting it 6 month ago. I commented elsewhere but I also have ME & EDS as well as severe autoimmune issues from a near fatal bout of adult chickenpox (varicella in the UK) in my 20s; which was what triggered the ME in the first place 9 months after being hospitalized for the outbreak & resulting pneumonia from having them internally as well as over every square cm externally. It took nearly a decade to piece all that together & I didn’t even get the EDS diagnosis until this last winter. They wrote the hypermobility including full hip displaysia & severe tachycardia off basically as 🤷🏻‍♀️. Very first thing my new doctor said after reading my history was “has anyone ever examined or tested you for Ehlers Danlos?” Nope...

Same my mom just brushes it off I think I will add it to my list of things I need to talk to my doctor about

Here for THIS comment lmao. Me too.

@@RedefiningBodybuilding ❤❤❤

The current theory is that ME may be a metabolic trap. It's been theorised that there is a widespread faulty gene and if gene were involved it would have to be widespread to account for the outbreaks of ME/CFS following an outbreak of something else. At any rate, it appears that 75% of the population has this mutation and it is believe it only gets turned on when the body experiences extreme threat (that's up to the body's cells to determine that). That might need to happen once in a lifetime or once every few generations. However, when it happens, if this faulty gene is not working, the metabolic trap happens and people stay stuck in illness. This has been the best theory thus far according to all I've read. Why am I writing this? Because we patients have been saying for years that this could happen to anyone and that means everyone should care. Well, it looks like it could happen to 75% of the population. It's always been around, but our environment's degrading and so the body may be under greater threat in general. People without ME/CFS need to care enough to advocate for us. As you can see by her explanation, even those with mild who are working lack the energy to do much more. We are a group who advocates at the expense of our own lives. We need allies. We need allies to pressure governments to provide research dollars, to demand that medical schools teach about ME, to counter the ongoing myths and stigma. Please tell others and encourage them to help us because it could be you, your child, your sister, your friend. I've had three friends in real life come down with this and be made severely disabled. (We also have higher rates of heart disease and cancer.) I have it. It is more common than people know.

There's a familial link and so here's something you need to know. Take care of yourself. Don't overdo. If you're tired rest. Don't push yourself. Don't let others push you. Work for balance in your life.

Jenny,i just wanted to say thankyou for not judging us.To live this life is pure hell.It's very common for M.E to overlap with other illness's etc.I truly hope that you manage to find the answers to your own health issues,never give up and never stop trying.I wish you all the best in the future

Thank you so much. That means a lot! I wish you all the best too.

@@jenrenby All the best Jenny :)

Primary biliary cholangitis can mimic ME--similar process in a part of the body but for different reasons, and PBC can be treated and managed. PBC can make someone appear to have severe ME. Most people are not tested for this to have it ruled out. Just thought you should know.

I learned how to deal with chronic pain from Jessica, she is my hero

Madeline Peck +