3 things about ME/CFS and Long COVID...

#MECFS #longcovid #pwME #chronicillness

[margaretcorfield]

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 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.

[craig]

Very much the situation in the UK and Isle of Man for so many.

[nutterbutter]

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 ❤️

[gingerindian]

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.

[Angel-rpnu]

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🌈💜💫

[pinkscorpion]

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 .

[Mcfads]

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

[alicegoldenvalley]

Long Covid here, 4.5 years. Thank you for this video. We basically live in a medical no-mans-land.

[LL-wcwn]

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?

[Enn-]

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!

[esther]

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.

[thejordyjoansofficial]

Thank you so much for sharing your story! I wish medicine in the UK had progressed, but sadly this is still very real 🫣🩵

[beeholtzclaw]

Well done Emma! Nailed id in less than 3 minutes!

[kathygreen]

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.

[hamedhosseini]

This is why think medical school has failed. So many incompetent doctors. I wish you all the best

[ms_amanda]

I got ebv and zoster 2 months apart at 18, I can relate!

[mokiloke]

Good job. Im where you are, wrecked. So so tired, i felt like ive been poisoned for the last week.

[hopemoore]

You need to listen to your Dr. Myhill in Britain.😊

[juliafrietsch.]

I wish they were here in Argentina. Life abroad the U.S. and U.K. with chronic illness is rough!

[Luftbubblan]

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.