Any ME/CFS recovery stories?

[Psm92]

Been suffering badly since covid infection almost 2 years ago. Losing the will to live.

It certainly seems as though, having finally had this disease accepted as 'real' (i.e. not in our heads/lazy) they are trying to stick it on anything they can't be bothered to investigate fully...

@PotatoScollop thank you, and for your input; it's very helpful and only some will understand how much it helps...

fwiw, I don't mean to invalidate anyone's experiences, and am very happy that some have recovered. Gentle hugs to all of us xx

I think I recovered. At least I recovered enough to have a "normalish" 10+ years. Can work full time. It's tricky to say though as I have lost all sense of what it was like to not get the fatigue and what is "normal". I still get floored when I'm ill. I managed to get long covid. Very similar presentation for me but definitely different.

I am 2.5 years post getting ill with ME and I would say I’m 90% recovered. I still have to be a little cautious- I can do nearly everything I used to be able to do, but I can’t do it all in one day, if you see what I mean. I work part time, manage little trips out with my daughter, am working on my walking in the hopes of getting back to running one day. I was previously housebound and incapable of a short walk to the end of the street, so it’s a big deal to me.

I rested almost completely at first, which I think made a big difference, and then I very slowly started gentle graded exercise therapy. It’s not for everyone but it definitely helped me.

The mental aspect is tricky. For me it was important not to necessarily believe that I could recover, but that I could at least live a good life with ME. I avoided a lot of ME groups because it felt like staring into my own miserable future sometimes

I am 20 months in from first symptoms and 6 months since formal diagnosis.At the moment the support I am getting under the NHS from the specialist service is not as helpful as I would have hoped it to be and so far has left me feeling flat and with not much hope. I am finding some of these comments really helpful.

@RubyPip Do you have any idea what helped you recover?

There’s a drug called AXA1125 that is going the process of testing/registration for the treatment of fatigue in long Covid.

I have had long Covid since having Covid in March 2020. I’m about 70% better

What’s helped me is really getting my head around pacing, eating well, rattling with supplements, psychotherapy,outsourcing cleaning etc.

@Psm92 perhaps not relevant anymore but I had CFS/long covid after being infected in December 2020. Off work and bedbound for 20 months. Never thought I’d recover, was trying to make my peace with not working, not having children etcetc. Now fully recovered, working full time as a teacher and pregnant. If you still need to hear the positive stories then do get in touch, I remember the despair when I was ill, just didn’t want to be here anymore some days

I had it 20 years ago. It took several years to recover. I rarely think about it now but often still need a post work sleep for a couple of hours when I get home.
A person I worked with when I was ill helped me immensely. He suffered from chronic severe back pain which impacted him. He said to me that sometimes you just have to realise that you might not get any better than you are now and you might just have to deal with that and live the best life you can. That helped me much more than all the well meaning advice to rest more, exercise, eat better, take vitamins etc. Ultimately I don’t know why I got better. Time probably.
Best of luck.

Dr Myhill
Keto diet
The lightning process
Vitamin C
Vitamin D
Lugols iodine
Infared saunas
And now LDN.

Not fully 'recovered' or 'normal' but gone are the days of 22hours of sleep.

I think some of it is just part of the cycle/time (diagnosed 13 years ago) but I think some parts of 'recovery' is also learning to understand the nuances of ME and its limitations on the body. I know now that I am unable to play sport. I know I will be wiped out for a few days after staying out late with friends or a day out somewhere. I know if I get a mild cold it will take me much longer to recover than average.

So my expectations have changed and I have learnt to incorporate recovery time into my life.

On a side not there is currently an ongoing study called decodeME which is asking those diagnosed with cfs to send in saliva samples. It is the largest ever study concerning ME/CFS.

I was bedridden with ME for a year when I was 13, and it's taken me more or less 20 years to be recovered. I'd say I'm maybe 90% recovered now, will never be 100% but I live more or less a normal life.

In my case it was just really resting as much as I needed, and then building up my strength and stamina very carefully once I was well enough to start to do that.

On the other hand my best friend had ME in her late 20s and recovered completely within maybe two years, so it is possible.

@Lindos1
my dd has also had 75% recovery with the lightning process, after three years of being almost bedridden after an illness. She’s now just started at uni.
There is stuff out there that helps, but I really don’t think it’s a one treatment fits all type thing. I tried a lot with my dd, the effects of the lightning process were instant, progressive and have been permanent.
My heart goes out to all that are suffering with this very poorly understood and managed illness.