ME/CFS | Severity Spectrum

This video is a brief explanation of the ME severity spectrum. It is only my opinion and you should consult a doctor if you have any questions.

[@fight4me747]

ME/CFS: 5 Things that reduced symptom severity Pt. 2 : kzbin.info/www/bejne/mZPRdJSBf9Klhck

[@texasgoddess323]

My ME/CFS is moderate. I leave my house about twice a wk and struggle to do absolutely everything, including showering, although I do get it done. It's even difficult doing the things that I enjoy, but I try to get in some fun things, like going to the movies and out to eat. I wish all of my fellow brothers and sisters of the M.E./CFS community the very best. Blessings and peace!

[@sugabay]

🙏🏼Thank you , you as well

[@margaretcorfield9891]

My daughter is awaiting an official ME diagnosis. She was diagnosed with Fibromyalgia 7 years ago, but the diagnosis never really seemed to be based on the fatigue, but rather on the pain. She does get bouts of pain, but the overriding symptom for her is the fatigue and dizziness which seems to go hand in hand with it. A new doctor is of the opinion that she has both conditions, so it has been yet another round of tests, and awaiting the actual diagnosis. I guess she would be classed as mild/moderate to moderate. She does have spells of up to a month, where she is totally bed bound, but they are definitely not all the time. Generally they will last two or three days. When not stuck in bed, she portions off her energy...taking a shower and getting dressed versus cooking an evening meal, going to see her daughter in a concert or show, and doing nothing for at least one day prior and two days after, or skipping the show completely and pottering around as best she can at home. She rarely leaves the house, has all shopping delivered. She uses outside help with household chores, and transporting her daughter to her various activities, but is communicative, and pleasant company for visitors, though visits need to be kept short, she tires so easily. She's terrified of it getting any worse. It has totally demolished the life she had before. BUT, with careful planning we were able to take her on holiday last year. The travel part exhausted her, both going and returning, but the opportunity to be somewhere else, with no responsibilities for just over a week worked out pretty good and did wonders for her general mood. The relapse back at home afterwards was expected and planned for, but it was made more tolerable because the holiday had shown her that life is still worth living. As a family, we have worked out ways to keep life going for her. Everyone does their bit. ME is awful.

[@susana5052]

After 26 years I’m moderate to severe. I hate that is stolen my life. It’s getting worse with each passing day. That scares me. I’m alone and have no family or friends that can help. I appreciate your channel. I just can’t visit often. God bless you. 🙏🏻🙏🏻🙏🏻

[@classicwrehasha]

🙏

[@Truerealism747]

27 years pain now worst symptom with ldn are you hypermobile found out I have autism ADHD causation genes

[@davidbrockes9183]

Good advice. Moderate M.E. here. I wish I could find a Dr near me that recognizes what I have had for 12 yrs.

[@KidCity1985]

They can't help anyway.

[@PlayingDownUnder]

Best advice is to be your own doctor. Which I'm pretty sure Johnny has said in other videos. Know what you can and can't eat. Know what you can and can't do. But the biggest issue is dealing with people who just think you are lazy or faking it....Johnny has done videos on that subject....Worth a look if you haven't already.

[@Truerealism747]

​@@PlayingDownUnderafter 27 years folks don't bother you scare most of them if they do😊

[@mandydini]

I’m never sure where to classify myself. It sure feels more than mild, but I am still working 20 hours a week from home. But I only leave the house for doctor visits, haircuts, and occasional work lunches. Otherwise I am home with my feet up or laying down all the time that I’m not working. A trip to a store just doesn’t happen unless I am willing to accept the PEM and the crash (it’s been a couple of years since I have attempted this). I guess that the name of the severity isn’t what’s I should focus on right now. What’s important is being thankful I can still work a little bit. Thankful that I have supportive people and doctors that believe me. I grieve for so many in the community, for the disbelief and the difficulties that people face. Thanks for your videos!

[@LuxMeow]

What kind of work?

[@mandydini]

I’m an engineer, so it’s a desk job. I’ve had to change my role though. Very few calculations and not much project management. I’m more of a mentor - I still have my knowledge of how to do things so I pass it on to younger engineers and provide guidance and instruction.

[@chansonette22]

In my view that's def not mild. I think those categories are misleading to be begin with. As one ME researcher I watched on here said "in what other illness would not being able to leave the house not be considered severe?". I guess it's because severe ME is so horrendous. Anyways, I'm in a similar place except that I can no longer work 20 hours b/c of a major relapse. But I can still work, and like you I work from home and do intensive cognitive work. I Instacart my groceries. I can manage little chores like loading or unloading the dishwasher. Extremely simple meal prep. I spend most of my time on the bed with my feet up.

[@mandydini]

@@chansonette22 thank you for your insight and for the quote! I also spend my days (when I’m not working) in bed. Little minor chores on a good day of about the level of the dishwasher like you say. I hope you can have a good day.

[@clairejohnson6522]

Love this man and his channel. Have moderate M.E. and not been able to work for years after contracting the flu and being in an abusive relationship.After he walked out and left me with nothing i came close to being homeless.No family or friends now so have to rely totally on myself.Lucky to get out a few hours each week for vitals like food but happily i no longer take anything for granted.When out usually get lots of interest from men but that doesn't last long term when they realise how limiting this illness is and i realise they haven't got a clue when they ask if I'd like to go swimming/ on holiday!PEM after going out and then feel like I'm dying.Planning the smallest thing feels like a military exercise.Pain and fighting with myself just to stay upright. I take joy in the small things in life now ,such as nature,and the fact i have a roof over my head, are truly life affirming.Sending love to everyone who has this,from the U.K.

[@Truerealism747]

From UK to do you happen to have hypomobility had CFS decades now more fybromyalgia but muscle pain symptom of me

[@clairejohnson6522]

@@Truerealism747 No, i have the same as yourself.I take each day as it comes.Some days it feels like I've been run over with a steam roller!Hope you are doing better than that!

[@Truerealism747]

@@clairejohnson6522 same as me everyday though.ive found out I have heds add Asperger's since sons diagnosis Dr lenz ADHD connection my CFS started after a broken tailbone 1997 causing pelvic pain but now it's more fybromyalgia skeletal muscles though I did have SPD as a child apparently fired up nervous system already primed with OCD as.my son now has.just list my.mum to severe ms and hypomobility Asperger's surely to what do you do for the pain my father had CFS now ok but was his thyroid

[@saveyourselves5923]

Even moderate m.e feels pretty severe at times, especially when I think of simple things I could do like take my kids blackberry picking Vs now where I can barely climb the steps outside my house. It's annoying how you can't plan anything because you can't predict how you're going to be: one minute you can feel almost fine, the next like death. Thankfully I have a really good doctor now. Seems my GP practise has finally crawled out from under its rock and is adopting a more functional way of thinking as opposed to pushing pills.

[@kavitadeva]

I have SEVERE ME/CFS. I hate it. I got it over 40 years ago. It's at it's worst now. I have done in the 40 years I've had this over at least 50 different types or modalities of treatment being told I would get better. Most of them because the medical community doesn't give a crap we're alternative holistic herbal acupuncture you name it I did it. Right now I have been for a very long time, totally bed bound. I have a mobility scooter and it's a feeling like I've been run over by a Mack truck or a train has hit me. I loved your video on the five things not to tell CFS people. You know I think people think that I'm lucky because I get to lay in bed all day and take naps and watch KZbin etc. But as you know it's nothing like that at all. Constantly nodding off I can barely get out of the bed I also have physical problems now degenerative disc disease peripheral neuropathy this illness is serious. And the worst part is I have never gotten a real diagnosis. It just upsets me that it isn't taken seriously at all. they'll say I have fibromyalgia really bad and that it's severe but not CFS. Anyways thank you for being on KZbin thank you so much I finally found somebody that gets it. I have no friends and no family I'm completely isolated with my amazing service dog. Without him I don't know what I would do. My question is does this ever make you or anybody in the comments cry? I'm always having meltdowns from feeling so completely out of it when I do one little thing. Have a great weekend and again thank you

[@KidCity1985]

I'm so sorry. I hope you can find some enjoyment. I don't cry, I don't have feelings, that works for me.

[@texasgoddess323]

Kevita, I don't cry a lot about it, but it does affect me mentally and emotionally. I reach out on KZbin, etc. and get support. I've also had therapy, which was very useful and taught me some acceptance and coping skills. All the best!🌻

[@crisnemitz1606]

kavita deva, I so wish I had some wonderful words of wisdom for you, but I don't. I've been sick since 2000 and almost completely bedridden for @ the last 10 years. It's horrible. I've missed out on so much of life. Especially my children's. That grieves me the most. Plus, both my parents are nearly 80 and the thought of losing them terrifies me. I'm so sorry you don't have your family's support. I thank God my family is completely supportive. I'm glad you have your fur baby. I've recently been thinking about looking into getting one also. You're right. It's completely isolating. I don't have any friends either. I don't really blame them. It's hard to remain friends with someone who is to exhausted to talk on the phone or even text most of the time. I don't cry very often, but I'm on antidepressant and antianxiety meds. I tried to go off my antidepressant awhile back and I was crying constantly. If you need to cry, do it! Grab your dog and try to let some of the pain out. This disease is awful. Whether it's mild or severe, no one should have to exist like this. Because this isn't living. I hope you have as many low pain days as possible. 🙏❤

[@fight4me747]

I have no shame to say this illness has made me cry many times. Hang in there.

[@crisnemitz1606]

@@fight4me747 Oh, no! No shame at all! If my comment came across that way I'm very sorry. I think the meds just numb my feelings. I don't think that's healthy, but at this point it's what I need to survive my situation.

[@user-xx2cq5sg7m]

Housebound chairbound can step into the garden, otherwise indoors sitting. Only up about 7 hours a day

[@RandomFamiliaMexCan]

I appreciate your content, I’m sure I had CFS before I was diagnosed, I was having extreme episodes when I was diagnosed. I’m just starting a channel in order to create awareness as well.

[@KidCity1985]

Thank you for doing this channel. Unless you have it, its impossible to understand.

[@rebeccagittens4946]

This video is wonderful. I am in the first yearish of having pretty mild (sometimes more moderate) ME/CFS and it is SO EASY to minimize my symptoms and difficulties because I can still manage so much more than I know a lot of people can. But it’s still really hard, I’ve had to take time of university and not be able to work my dream job (farming), and I can’t do all the things I used to. Thank you for reminding me that mild CFS is still valid!

[@tamarapalmeirat4486]

From mex🇲🇽, can hardly write severeME now. Im 51 started at 16 no support from fam or friends💔 abusive enviroment⚠️need psycological help.. Im isolated Need to get strong I want to live 🌱

[@clairejohnson6522]

Sending love.I speak from experience that an abusive environment filled with toxic people (Narcissists)make matters worse.Truly hope your situation improves.We all understand each other here and know how difficult it is having this illness.Love to you and best wishes from the U.K

[@brendaspicer5526]

I am in the process of divorcing my cheating husband. The stress from him lifted immediately when he left.I am better now, but not fully healed. Sometimes the people you think are helping are only making it worse.

[@visionvixxen]

Praying for you dear one

[@Truerealism747]

Do you have pain everyday with it

[@Truerealism747]

@@brendaspicer5526 took.the illness.to.find.it out

[@MC-mi4ck]

Thanks for your videos. Mild to moderate ME here. I’m really worried how I’m going to live with this.

[@KidCity1985]

Small bites of the elephant

[@LuxMeow]

@@KidCity1985 Terrible made me visualize someone eating an Elephant. :/

[@KidCity1985]

@@LuxMeow well, get going!

[@Truerealism747]

Eat organic liver b12 methocalbalmin injection and ldn for start

[@Luv2782]

I’d say I’m more moderately severe at times. Gave up my career seven years ago. Mostly housebound. It’s getting difficult to even have people over at this point without being terribly overstimulated which is rough cause I need help with my four month old. It has definitely impacted my social life which feels next to nothing these days. Want the best for my daughter. Still hoping to improve as I go up on my dosage of ldn. Your videos always help me feel less alone. Thank you

[@Truerealism747]

How's ldn going check out Sarah myhill inject b12 methocalbalmin

[@uzo_wonderfullymade]

Sending you love. You are not alone. This community, we are here 4 u.

[@baybabe95]

Thank you for this video. I have a lot of the symptoms of ME, but if I do have it I’m mine would be considered “mild”. The fatigue has severely impacted my life, but I can still work full time, so I wasn’t sure if this was a diagnose I should rule out. This video is really helpful, especially the warning that it can progress!

[@kjetil_]

Good info, Johnny :) Thanks

[@daniellecoleman6979]

I may leave home once a month. I am in bed and can only walk to the bathroom. Showers are rare and that’s it for me. My life is ruined.

[@HowToGetSaved...Love.Taylor]

I'm so sorry and resonate with what you said. Showers are embarrassingly rare.🙈 I left the house 8 months ago, and before that I, went over a year. I hope things get better for you.

[@catchappie]

For me, different at different times of life. I really like your five-point differentiation which is my all time favorite. 1-3 is usually insufficient but I did see an element of one evaluation system which uses colored hearts: Red, Yellow, Green. (HeyKona). I'd love to see more of this person's evaluation software for people with work burnout. (NOTE TO JOHN: Please add to the poll questions: Have you ever experienced burnout at work or as a caregiver or in some other capacity? Was it before your symptoms or diagnosis, concurrent, or some time after?) Thank you for operating a clearing house for information! Thank you for all you do!)

[@CricketGirrl]

I'm severe/very severe and miserable.

[@denisebraisby4251]

Mild to sometimes moderate, work full time but struggle with daily symptoms and have to have time off during crashes. It effects my social and work life and dating is difficult as Im single and live alone. I've had this longer than I first thought but it got worse after a COVID vaccine put me in hospital

[@lemoncalm]

Good video. How about very severe ME?

[@CricketGirrl]

Very Severe terrifies me. I've been teetering on the edge of severe and very severe for years.

[@Ninjamom4]

❤❤❤

[@gl00wing]

I'm mild/moderate so I'll definitely be needing mobility aids for example but my symptoms have been gradually worsening since they first started as very mild 2 years ago. Is it possible that this will evolve further into severe stage? I know there's not a lot of research but I'm very worried since I have my whole life ahead of me still.

[@tp6299]

Does anyone have experience trying the carnivore diet? It's the only thing I haven't tried 😫

[@LuxMeow]

Been adding more red meat to boost iron. A high protein diet does help to give more energy but it won't prevent bouts of debilitating fatigue. Again it is based on individuals so you will only know if you try adding more protein how you will do.

[@fight4me747]

It seems to help people a bit, but everyone is different.

[@tylerswindle1471]

I did, it helped with inflammation in my joints but it did nothing for my M.E. It actually ended up giving me fatty liver disease. Now that I've gone back to eating a normal healthy diet my liver is fine. My cholesterol and blood pressure was also off the charts and now are both fine.

[@Truerealism747]

@@tylerswindle1471 think it depends what blood type you are are you type o

[@PlayingDownUnder]

Thank you for your videos. You are spot on with all your videos I've seen so far. It might sound bad, but it is helpful to know others are dealing with similar issues.

[@fight4me747]

It doesn't sound bad at all. It's a terrible feeling to be sick and feel like your completely alone.

[@PlayingDownUnder]

@@fight4me747 Thank you. Again.