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 was unwell for a good few years in my teens, missed one year of school. I would say I recovered over a few years, I started an anti-Candida diet but I'm not sure if that helped as it was for a separate issue. It was a very healthy diet though so can't have hurt 😀 I hope you feel better soon, it is very isolating. I think the most important thing is to listen to your body and rest when you need to x

@backawayfatty1 Thanks so much for your reply. This is really good to know and has given me the push to explore LDN. Sounds reasonably affordable too which is good.

No worries at all. I think affordable, especially compared to other options. I seen a private prescription recommended for fibro for marijuana & it was £135 a month! If I remember right LDN helps around 65% of people so worth a shot.

I read one success story which resonated with my quality of life. Possibly similar to yours also. The woman now works full time, runs & socialises after work. To me - that sounds great 🤣

I'm personally trying LDN to give me more energy for my daughter, energy for health (eating good foods & exercise) & if it's a miracle drug for me then a baby! It's hard at times but im pushing myself to be the best version of me I can be. My goal for next year is to be able to stand for an hour at my wedding 🤞

Im doing a short mindfulness course too which i think is helping. Im also waiting on a referral to a pain clinic but it's 1+ years waiting list so trying everything.

I would also suggest checking out the stuff that works website. Great resource for people like us who can share tried & tested medications & lifestyle changes. You create a profile & the website collages everyone's data into statistics. There's also a forum part to post questions & seek advice

*collates

I've had it since I was a teenager, am anywhere between 50%-80% recovered but never completely recovered.

I can work and go out and do stuff, but still need to pace. I work mainly from home, and while I can work outside the home I couldn't do it every day, or for a standard 9-5 workday. If I have a very strenuous or long day (like going on a long hike, or a day trip somewhere) I'll have to spend the next day in bed. I swim once a week and that's manageable without impacting my energy levels.

I read Phrenologistsfinger posts with great interest, as I'd like to explore supplements more (I take Vitamin D high strength).

Curious about the mention of Naltrexone - I thought Naltrexone was an opioid-receptor antagonist, a medication prescribed for the treatment of opioid addiction?

@savebuckbeak my fertility clinic! Both the thyroid meds and testing for MTHFR are routine in optimising fertility. Whatever my remaining immune issues are (still working on that) and my age (40) seem to be affecting egg quality so having trouble staying pregnant.

However, you can get genetic data on mthfr from private genetic testing like 23 and me. It’s very common - approx 40% Europeans have it.
mthfrsupport.com.au/2017/01/chronic-fatigue-due-mthfr-gene/
mthfr.net/mthfr-c677t-mutation-basic-protocol/2012/02/24/

thyroid stuff, the NHS is dreadful at sub-clinical treatment. there are private endocrinologists who I am told will treat you. I will look into this once my fertility journey is over as I refuse to go back to hypothyroidism. There was a great MN thread on this a year or two ago. You can also check your TSH etc using medichecks.

This is the absolutely worst advice ever for someone with me/CFS - the last thing you want to do is to push yourself physically.

You need to avoid PEM and depending on how severe you are, PEM can be triggered just by walking up the stairs.

This type of comment shows how misunderstood ME/CFS is.

You can be active if you're working within your energy envelope, but don't push yourself to do more than you can physically.

I had a work colleague who recovered completely in practical terms but was always mindful of the risk of relapse and wS always careful, eg if she caught a cold (we worked in the nhs and its unavoidable).

Speaking as a retired clinician, I agree with @MissisBoote donas much as you can, push the envelope gently, DO NOT push yourself to exhaustion. Listen to your body, not to a trainer.

At its licensed dose it is for alcohol/opioid dependency, but at lower doses (0.5-4.5mg) there can be benefits for pain relief/better functioning. It blocks the opioid receptors and subsequently triggers more production of endorphins and helps the immune system to be better regulated.

Not many studies on it as it's an old drug so there's no money in it for the drug companies so no incentive to fund research.

ldnresearchtrust.org/how-low-dose-naltrexone-works

I know a few people who have fully recovered after being very badly afflicted for several years. They are all quite careful to manage their health proactively and they are mindful of not over exerting themselves, but essentially, they are living completely normal lives.

I have it alongside hypothyroidism so even if recovery is possible I'll probably still feel just as shit.

I think it depends when it starts - I've know people who had it quite severely in teens and 20s to make a full recovery, but if it starts later than that (as it did with my mum, late 30s) I'm not sure you ever really quite shake it. At your age I imagine you should be able to recover a lot of function, but expect to maybe have some bad patches on and off.

My mum's never been at full health since, but she did start off being bedbound for about 6 months and pretty housebound another six and has never been that bad since, or not for very long, so people can come back from really severe restrictiom.

For my mum, amitryptaline to regulate her sleep and managing activity levels helped. But different things help for different people, though, it's so varied how it affects individuals. It's worth looking around and find what works for you, and be prepared for some trial and error. Good luck!

I'm not sure you can ever be completely 'recovered', but you can gain a lot of function into your life. I've only told a very few people I have ME/CFS, and I would guess no one else even has a clue. I work FT in a demanding job, although do 5-days condensed over 4.5, as I can't manage 4 full days in a row without a severe set back. I do some reasonably vigorous sports and other physical activity. I have to pace very carefully and think ahead: if I want to be able to do XYZ with the child on the weekend, better go to bed early every night this week. If I do have to work 4 full days, I book annual leave for the 5th day of that week and several in the following so I can recover (I really try to avoid this, very annoying use of annual leave!). So it's always 'there' but when I'm doing stuff, I'm not limited in what I can do.

@Singinginthesnow just to point out tramsdol is not an anti depressant, it is a strong opoid-based painkiller.

@murmuration Thanks for your response. Sounds like you have a great quality of life regardless. Can I ask - has it always been this way for you (a relatively 'high functioning' form of the illness) or were you more severe/moderate earlier on?

@Lacedwithgrace Sorry to hear this. Aren't there some very effective medications for hypothyroidism?

I can’t say I’m recovering or improving but holding my own atm. Some days are worse than others, some a lot better.
Pacing —- essential. My weeks are planned. If I have something I have to do I minimise the day before. EG Next Monday hospital appointment, involving 24 mile round drive and I’ll stop on the way home to pick up dog supplies so Sunday I’ll not do much, short walk with dog that’ll be it. If I’m knackered Tuesday then it’ll be similar to Sunday, even calling dog walker to help out if necessary.
Vitamins — B1 was a game changer and stopped the deterioration. I read that some people can not use the B1 they take in through food so I take 2 x 100 mg B1 daily. Took 4 weeks to start working but once it did made a noticeable difference. I also take selenium, CoQ10, folic acid.

OP the Covid Lungs threads might offer some companionship and understanding, if those are still going. Hope that you do recover soon.

The M.E. Association say:

’Research into prognosis

• Several research studies looking at prognosis in ME/CFS have now been published (e.g. Bombardier and Buchwald 1995; Hinds et al 1993; Sharpe et al 1992; Vercoulen et al 1996b; Wilson et al 1994).
• Results from these studies indicate that ME/CFS often becomes a chronic and very disabling illness with complete recovery only occurring in a small minority of cases.’

So a full recovery is not commonplace. Anecdotally, I’ve found people who recover or significantly improve often have other underlying conditions that worsened or were either misdiagnosed as M.E. in the first place.

I stabilised a couple of years after diagnosis, but my baseline is still extremely low compared to how I was before as a normal, young, healthy woman. It needs constant management and I am crippled with PEM if that doesn’t happen.

Like a PP, my thyroid levels are out of range but not significantly enough for the NHS to treat them. I’m awaiting investigations for POTS which my M.E. specialist recommended 7 years ago. The difficulty is being taken seriously for other conditions when so many symptoms can be attributed to the M.E.

I had a post viral thing- v like long covid. Lasted for at least 4 years and no help past the initial stages. In the end I forced myself to exercise regularly using an exercise bike. Even if I felt like death after it and the next day I kept doing it every day. After 6 months my energy and fitness levels were back up to normal. Pregnancy did help after that.

I had it for 8 years through my teens and early 20s. I recovered. I'd say I'm at about 85-90% most days now. My immune system is still shit and I can get run down but I have a full time job and two kids, a relationship and I work out when I can.

I tried a lot of alternate therapies.i think high doses of vitamin c helped kill the virus off, then time and some cbt/hypnotherapy helped deal with residual behavioural stuff and habits that were impacting, too, but I can't say for sure. It's been over ten years now and I never thought, when I was so ill, that I'd have the life I have now.

Stay hopeful x

Researching LDN now. I've never heard of it.

I have fibromyalgia. I'm interested in people's recoveries. I'm so much better than when it was at its worst, but still not my old self.

Very sorry you're suffering like this OP. It sounds miserable and isolating.

I know that anecdotes are not statistics but I have a mate who had ME in her early 20s, and she was very poorly for about 18 months/2 years. She's still careful in that she's on the watch for any kind over exertion, but she did recover and within a few years was working as a youth worker at a residential centre - a pretty fully on job. She now has two young girls in her early 40s.