To think ME/CFS recovery is very rare?

[savebuckbeak]

Been suffering for about a year now, since getting covid/some other virus. Ups and downs. Some good days, some bad. Wfh full-time but from home, and in a job I'm very familiar with so it's not overly tiring. Feeling pretty low and would love some recovery/major improvement stories. I can work on my laptop and potter about the house, but a 15 min gentle walk outside often just makes me have to get into bed.

I'm only 30 so it can be very lonely and isolating. No partner either.

I know two people who had it so severely they were housebound for years, but to meet them now you wouldn't know. Both fit and active, with busy lives etc. Both still have to he careful of their energy output but are very much 'well'. Utmost sympathy and well wishes though. DP developed severe severe ME in May 2020 (X2 ultra stressful years, then possibly covid or some other infection that sparked it off). He was virtually housebound for 15 months, previously being an ultra fit marathon runner/surfet/extreme sports type. Its nearly broken us both but he's on the up day by day now. I do wonder if he'll ever be totally well again but the progress in the last 6 months has been amazing. Wishing you all the best op. It's a fucking travesty how little the medical profession care about me/cfs sufferers. I never thought it possible that you could be so so ill in our developed country with so little care or support. Its given me major health anxiety and a massive obsession with wellbeing and self help type health improvement / care. During the lockdown I was literally the only person keeping him alive. I'm so afraid to be on the other end of that equation. But tldr: yes I absolutely think you can more or less totally recover (or at least to the point that life is fully functional and meaningful).

@savebuckbeak of course, I don't mind sharing.

I'm in Scotland & I went through Dickson Chemist Glasgow. NHS won't pay for it because it's off label (not designed for fibro etc). I paid for an emergency app which was £50. I believe it's £40 if you don't do emergency. They needed confirmation of diagnosis which I got from my GP via a letter. I did have to discuss what I new about the drug with my GP as she was keen for me to fully understand/research what it does. I used the LDN trust website & Facebook group to research dosage/side effects etc. There are also lots of success stories too which was good to read. Costs £22.50 every four weeks.

I've tried every drug recommended by the GP & nothing was helping. Changed my career. Paced myself. Felt like I was wasting my life away watching Netflix! LDN has definitely made a difference for me & hoping there's more to come. Happy to answer any questions you have

Thank you I think her problem was she didn't want yo get better. She never trued anything alternative. Wouldt move doctors when we moved 2 hours away from our gp. She would only see that one gp who I think was too lazy to look into different treatments.

She liked the fact she didn't have to work and has been on benefits since 18. She was too tired to look after us. Yet still had 2 kids after me. I ended up being a child carer.

I believe she didn't and still doesn't want to be better because she likes being taken care of and is also a lazy person. Not because of m.e. she is naturally lazy and with the m.e is quite dangerous! She used to leave me at 8 years old with a new born for hours on end!

Eight years on from sleeping 20 hours a day, I love a fairly normal life. I still need a nap most days and I still get more tired than most and I tend to plan my life to give myself breaks without realising. But I manage and people who didn't know me wouldn't realise.

Just read replies and wanted to add tgat LDN was a turning point for DP. Also keeping sugar, gluten low, plus no caffeine or alcohol. I think accupuncture and cranial osteopathy made a difference but maybe because the practitioners actually listened, sympathised and tried to help, unlike any medical professional we've seen so far. Being listened to and heard I think was tremendously valuable.

Roseway Labs also prescribe LDN and have a prescriber attached to the pharmacy.

I've had me/CFS for 8 years now. I'm a moderate sufferer and mostly housebound and had to give up my job. I live in hope that one day I will recover.

It is hugely isolating and such a misunderstood illness.

If you're not on any meds atm ask your GP to try nortriptyline/amitriptyline as this can help you sleep better at night-time to give your body more time to heal. I didn't realise how badly I was sleeping at night until I started taking it.

I wonder if swimming wouldn't help your lungs? You're lighter in the water so you should feel more comfortable and less tired. Maybe it could help you to improve your muscles? You're young, so you'll get better, have some faith! Give it time, Covid brought the world to its knees!
My mum has a friend who's had leukemia for over 10 years. The last time she relapsed, she was having trouble walking because one of her legs wasn't working, so she forced herself to walk. She'd go out and walk as much as she could and sit down in cafés when she needed a break. Her leg's better now, technically speaking it's the only thing that's better but she's a strong woman.
Get a personal trainer to come to your house if you can afford to. Look at it as an investment in your future. Don't give up! Never give up!

Pregnancy cleared mine up. Though I wouldn't recommend betting on it!

I’m recovered, well mostly (or recovering). I had to figure out all the aspects that affected me. As follows:

vit D deficiency resolved
mthfr mutation so needed to cut folic acid from whole diet, take methylfolate and folinic acid plus cofactors (Ben Lynch, Dirty Genes good on this). As a poor methylator I also need to limit consumption of booze, sugar, gluten and take regular Epsom salt baths.
thiamin/b2 high dosage plus B2 and cofactors like tmg and l-glutathione
extra electolytes am and pm (we’re all deficient in these basically)
levoythroxine to get my TSH under 1 (was 3.3, normal but still symptomatic) plus quitting gluten
every supplement I can find to boost mirochrondria and ATP production. Creatine, l carnitin, choline , AlA, pqq, d ribose, nmn, tru niagen

i manage to climb stairs by running now, I carried a ton of really heavy boxes of books yesterday and no fatigue or PEM. If I don’t take the supplements though it can return so I know there is an impact.

We are very nutrient deficient and I believe/have proven that changing this makes a huge difference. My diet was already ‘healthy’ and balanced macro-wise btw so it wasn’t that.

Sorry, tmg and l-glutathione are cofactors to methylfolate not thiamin

I’m also on a boatload of anti-oxidants, incl melatonin, reservatrol, ubiquinol, NAC etc (for egg quality). So they might be helping as well.

I also had a Vit D deficiency & treating this has helped massively.

@Singinginthesnow I'm so sorry you had to experience that as a child. 💐

Also, seen this today. Not managed to find the supplement mentioned in stock anywhere yet though. www.theguardian.com/science/2022/jun/26/can-our-mitochondria-help-to-beat-long-covid?fbclid=IwAR3YI9ZK6i2geNjkUIVaFOICdIrCijlX0TsQHwx7LI6RD86gG4n-TtDIS4Q

@Phrenologistsfinger Thanks for your reply. Out of interest, how did you get a prescription for thyroid meds if you're results were "normal"? Also, how did you check for mthfr mutation?

I always say I'm like an addict - always in recovery, never recovered.
I fell ill at 14 (post glandult fever) and I'm mid 30s now - but I'm off medication and work a full time job. I have to manage my time well, nap a lot and pull back if I can feel myself deteriorating. Still have a lot of discomfort but I'm functional. So I live a relatively normal life (or as normal as I can imagine) but I'm always expecting the axe to fall again and do everything I can to ensure it doesn't.

No I've never recovered

I had severe ME and am fully recovered.

@Oceanus Thanks for your reply. Exercise isn't actually recommended for ME/CFS patients, unless it's very gentle. You certainty aren't supposed to push yourself as that can often make patients significantly worse.

@billygoatsgruff1 So great to know you fully recovered! Were you ill as a teenager? Do you know what might have helped you recover?

Good luck to you! There are people here who seem to have a grasp on what you're going through. It's a shit disease yours, it really is, but don't despair before you've tried it all!

I was severely ill from age 22-24 and very up and down from 24-26. I'm now 37 and my last ME symptom was at least a decade ago, though I am currently pregnant and I have felt more fatigued than most pregnant people do I think, though I have functioned.

Basically, it was time. Pacing in the early years and pushing myself in the latter ones.

I recovered. There is a big mental side to recovering from CFS/ME though. You have to really really what to get better and work at it every day, and not use your ME as an excuse for anything, ever. I know people might not agree with this, but you won't get better from it by doing nothing. You have got to want to get better and work at it

I was very, very ill with it in 2019 - about 6 months in bed. I'm much better now, but will respond in more detail tomorrow - need to try and catch some much needed zzz's...

@SoVeryVeryTiredToday Thanks for your reply. When you say work at it, what would you recommend?