3 things about ME/CFS and Long COVID...
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- Опубліковано 23 лют 2023
- 3 things to say about chronic fatigue syndrome / myalgic encephalomyelitis (ME/CFS) & Long COVID.... Thank you to Emma (@undercoverautie on TikTok & Instagram) for sharing her story.
#MECFS #longcovid #pwME #chronicillness - Наука та технологія
Same thing here for my daughter. She's been like this for 10 years now. DWP thinks she doesn't have a problem, but right now, she's on the sofa with the curtains drawn and no light on because the light hurts her eyes. She is wearing ear plugs to block out the noise from the road and the neighbours. It's all she can do do lift the cup to drink some ginger tea, the effort of actually making it is too much.......thus is because she 'overdid it' on Saturday ( 2 days ago). She went with her daughter to a recall audition. Taxi there, taxi back, but she had to sit up and not sleep/rest for just under 3 hours, while she was there. She also had to respond to other people who were waiting for their children to finish too. It would have been rude not too. So this week she is paying the price for living a normal life for part of a day.
And btw, after 10 years of this and numerous referrals, the Fatigue Centre have still never seen her.
I'm so sorry you guys are going through this. Im glad that she has you to believe in and advocate for her.
Very much the situation in the UK and Isle of Man for so many.
Girl I wish I could be friends. I’m 23 and when I was 22 I got critically ill, although I was showing symptoms as early as 13. I have endometriosis, interstitial cystitis, and I believe chronic fatigue syndrome, although most doctors would rather die than even discuss the possibility of such an unfamiliar and unknown illness. To anyone who can relate, please don’t look at this as if your life is over. There have been many adjustments it’s true, I had to quit school and lost my job, but it gave me a pathway into being an entrepreneur and now I’m happier than ever! Even with chronic pain or fatigue having a happy life is possible. Never give up on yourself ❤️
Nah this illness is no way to live.
After having it for about 5 years I've come to the conclusion that death is better than this s***.
Thanks Emma👏💖 We will never give up! I also am so grateful for the Open Medicine Foundation🙏... patience, inner strength and hope to all ME sufferers out there🌈💜💫
I have had CFS/ ME - since November 1996. It started with glandular fever, and I have never recovered fully. Some cycles of debilitation last about 5 years of highly distressing sypmptology. in between that i managed to reduce symptoms, manage energy, but never , ever fully recovered since 1996. I was an athlete. I could bench press 150kg for 10 reps, squat 250kgs for 10 reps. Super fit and super powerful. One doctor - when i relapsed for the second time said 'you dont get a relapse of ME'. I told him to fuck off and left his surgery and wrote a letter of complaint. One of the other GPs in the surgery i went to had known me, and was a newer approach at that time - and he got the other Gp to write a letter of apology to me. What an arrogant big prick that man was. He was hell bent on take a tablet and that is. I took no tablets.
For some reason, mysterious reasons, who knows, but the government in the UK dont want to know about this. I would hope that as long covid affects people possibly the same way as ME/CFS affects people money and research will get put into this area at some point.
Has there ever been a group of patients as ridiculed and dismissed (frequently justified by psychologizing it) as those suffering one of the most debilitating diaeases one can get... Me/cfs?
@@PersonalStash420 I can see how bipolar could be ridiculed with symptoms like "whining" etc... You even said you don't like hearing bipolar patients whine. But does anyone actually dismiss bipolar and the symptoms like "whining"? I'm pretty sure most doctors recognize it and say "yeh you have bipolar which explains the whining/emotional swings/moods/crying spells you are experiencing, you have a mental illness". You can then get serious support and help from a psychologist for bipolar. It is taken to be a serious mental illness commensurate to the disability it causes.
If ME/CFS was a mental illness it would probably get 100x the respect it currently gets as a biological illness that disease pathology is yet unknown. But then patients wouldn't get the hope of science coming up with a treatment that works because it isn't a mental illness.
I think mine all started with having Covid and I never fully recovered. I had a mild dose of it back in 2020 . I never had mono . Thankfully , my condition is not severe like most, but if I don’t pace myself . I can be in bed for days with slurring my speech and word findings . There needs to be more funding . It’s 2024 and I live by a medical school . Majority of them I encounter. Don’t even know what it ME/CFS is . I had to explain it to my physical therapist the other day before we got started with my session .
Gosh it sounds a bit like my story
I'm sorry you have it
You are really articulate
I couldn't of done a video like this !
I have hope with OMF
Unfortunately I'm approaching 57
I think its too late for me,but I dont want others going through what we all are going through
People with ME are brave , we have no choice but to face this everyday
Change will come XX
So true
Fully agree....I ended up with CFS/ME whilst as a care professional working through pandemic prior to vaccines...There is a lack of support and knowledge and interest and education ..In finding a solution to this illness.....It greatly impacts lives and destroys.....Please look into and release us from this illness
OMF is where I send any extra money I have. Granted, I haven't worked since 2013, and don't have much, but on the other hand, I also don't spend money going out, or buying new cloths, or driving, or even eating much, so since I'm not spending much money, I do have extra that goes to OMF to help with research. I've no idea if treatment will be found in my lifetime or not, but if there's something we can do to help people in the future, then why not help!
Yes i feel my donations are going to people in the future, though i so wish things could move faster and solutions were on horizon, but even that is not yet the case.
Are you receiving disability? If not, are your family members helping you? I’m just very curious because I am 100% sure I have cfs but I haven’t found a doctor who could diagnose me and I have been unemployed since 2014. I have a long list of medical conditions but could not get myself approved for disability so I feel worthless. If we’re too sick to work because of cfs but couldn’t find doctors who will treat us seriously, I just don’t know how we’re supposed to keep on living without making any money. I don’t know what else to do and I feel like because I’m a guy that I wouldn’t have the chance to ever get diagnosed.
Gosh I'm so sorry. Do you have family members to help you ? This is so sad 😢 xx
Do you get much pain with your me
Yep. No help from the doctors. My third bout. First one after thyroid storm (Dr over medicated me), second after shoulder surgery, third after respiratory virus (caught from a friend who came to visit sick, thanks!). Still battling and this third bout has been the worst yet. Lots of gaslighting or told to just taking anti depressant which I tried for the first time ever (am 69) and was like pouring gas on fire.
Thank you so much for sharing your story! I wish medicine in the UK had progressed, but sadly this is still very real 🫣🩵
Seriously, doctors in my experience (and no not all of them I am sure, but those I had experience with...) are so useless with this. When I told my doctor about issues with shortness of breath as one of my main long covid symptoms, he actually started explaining me that 'it's really not possible that there is not enough oxygen in the room, if everybody else is breathing normally' (???) and also 'even if you stop breathing for 5 minutes, the oxygen level in your blood hardly drops'. I'm sure that's why people constantly just casually stop breathing for 5 minutes without the slightest sign of discomfort! And obviously this amazing fact will magic away anyone's breathing difficulties after covid infection, after all it's just an intellectual misunderstanding they had about their oxygen level! [/sarcasm] That was literally all he had to say about this. I still find it unbelievable.
Well done Emma! Nailed id in less than 3 minutes!
Excellent video. Thank you!
Nice one mate
I wish they were here in Argentina. Life abroad the U.S. and U.K. with chronic illness is rough!
I got it from Mono too
This is why think medical school has failed. So many incompetent doctors. I wish you all the best
Good job. Im where you are, wrecked. So so tired, i felt like ive been poisoned for the last week.
I got ebv and zoster 2 months apart at 18, I can relate!
How old are you now?
Do you live with this or are you cured?
Well done!
Hmm wonder if this could be something i have. Had "brain fog / fatigue" for about 9 months now. I thought this was related to an ear infection that could perhaps turned to brain inflammation. I continue as usual, well see if anything changes. None of the things named is anything the doctors will do anything about so i cant be bothered to spend more time there.
One of the hallmarks of me/cfs is "PEM" post exertion malaise. You may make a short grocery shopping trip etc and within 48 hrs be slam with worsening symptoms. Which can feel like a horrible flu and send you to bed. Can you relate to that? If so you probably have me/cfs.
very nice explanation
But it is all in the head. It's the nervous system, which I believe stems from the head.
There's NO HELP, I'm getting so tired of waiting for any help, I have severe ME
You need to listen to your Dr. Myhill in Britain.😊
Я живу в России и с врачами проходил и прохожу через тоже самое. Они не понимают ME/CFS и отправляют к психиатрам, которые тоже не в курсе этого заболевания и разводят руками.
What are your EBV levels in your body after the infection has once again been fought off.... EBV is always in the body after initial infection so look at reducing those levels if they are still present.... I have ME/CFS, sorted this out and energy levels since have been better than they were so I'd say worth looking into 👍
What with, paxlovid, Valacyclovir??
Exactly, didnt know there was something that could treat the ebv levels rising again or whaterver is causing the flare up
What do you think the motive is for medicine to think it’s psychosomatic? I don’t see why they would lie on purpose?
Most doctors could easily be replaced by AI but drug sales would plummet and health improve.
I think my cfs led me to catch cov 3 more times
I suffered from covid and then long covid. I knew it was CFS but I knew it was not a psychological problem, but still I went for antidepressants. They didi helped me but took a lot of time to come off them. Positive mindset, healthy vegetarian diet, meditation will certaily help .
Except that OMF are *not* doing anything about it.
The cure is so simple...
What’s the cure?
@@jameswalker68 It's a body safe mode.
But the mind is in so much sufering
That the state you are in is making you stay in that safe mode.
For me is not CFS/ME Its some kinde SS, Squzee Sindrom.
For the brain I use carniosacral therapy.
For the body chiropratic and reflex masage.
For the mind, you got this, excapte the curnt situation.
And don't try to hard becuse you can't and you will stay squzeed.
Try to find new peace and new relax old way of fuction is not in your reach any more...
Hope your mind will proces this.
How severe is it with you?
With Love, Mike
@@mihakavcic7237
Hi Mike. Thank you so much for your very kind reply. It actually made me cry. Thank you for the warm wishes.
I understood most of what you said I think. I don’t think my symptoms are as bad as the lady in the video - but I have had to stop work. It feels like my soul/spirit has worn out, and just can’t do “life” anymore, with all the physical symptoms mentioned in the video.
How bad is it for you?
Really appreciate the reply. With much love and best wishes from James in Australia
@@jameswalker68 I am ok now if we talk aboit cfs/me but some others treatmens were so radical that in the proces I dameged brain nerves to the point I got some nevrological problems but I will resole tham too.
And don't searh for the one cause of cfs/me is evretyhing from the mond,sleep ,energy, strenght the most importen for me was the blood flow, but the most chrusal is to feel good but you can't fell good thats the whole point of this "game".
It's everything and you try to addres everything but in new comer way.
I remember when this condition was in the last months and the PEM kick in , I just lought and lie down in smile. This is how you "win".
You feel good, even in your worse.🫡
That way everybody is talkin about accaption.🧐
I am cured its not the same that for sure, but I can sprint more time than before the CFS/ME. But my approach was so radical that I develop some serious mental condition. But you know when you conner CFS/ME you are a silent warrior for life.
I understand you cant do life any more you are crippled in all aspects and no one gets you. Its hell. But you are ok, just squeezed.
And sorry for the late response.