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 honestly think mine went away when I got viral encephalitis. I was off work for five weeks and hospitalised twice but after I recovered from the encephalitis there was no trace of CFS and I have never relapsed in over 20 years since.

I've had myalgic encephalitis for the last year. Fortunately, I'm retired, so don't have to fight the symptoms (exhaustion/strange sleep patterns/anorexia) which would have stymied my professional career.
What really annoys me is the brain fog. Can't remember where I put things/if I did things/what I've said to people.
The last daft thing I did was put my glasses in the fridge! No wonder I couldn't find them . . . ;)

Sorry - thought I’d replied but didn’t hit post. Yes it did get better - first nine months, I was trying to persuade myself that I wasn’t ill and so ricocheted between complete exhaustion and adrenaline induced activity wind resulted quite rapidly into exhaustion - 4 hours out of bed was good and I spent a lot of time on the floor unable to get up. Next twelve months - moved back home, had my old family GP ( no bedside manner but believed me) - and my parents paid for me to see a psychologist ( worth every penny), finally grudging accepted it was not a week on the sofa that had gone slightly awry.
Lot of plateaus/ one step forward, two steps back. I did have to reconsider my career path - dramatically.
Two years in, I used to spend a week at a drama festival each year - completely set me back a couple of months but also I got to be me for one week. The rest of the year was very much about balancing energy and living as a person with ME. This was one week where I got to be someone else but remembered there is a lot more to life. Appreciate I sound very privileged with this but that particular drama festival catered for my and other peoples needs in a weirdly accessible way.

That is so interesting. How do you think that happened? Was it the way the hospital cared for you/drugs given or was it your body fighting back that killed off the ME?CF at the same time?

That's worthy of medical research.

@WinterFoxes I wonder whether ME/CFS is caused by some overreaction of the immune system and therefore having a serious illness to fight off allowed some kind of immune system reset. There would be no easy way to research it though. You can't ethically make people sick to try and cure them of a different illness. The only option would be to gather data to see whether this had happened to other people. I certainly wouldn't wish viral encephalitis on my worst enemy; I've never been so ill.

My mum moved to Spain for thus very reason, many years ago when I was much younger. The warmth and sun helped her recover. It took a long time. Yes she recovered.

Your mum was wise.

I think we massively undervalue convalescence these days. People used to be encouraged to rest. These days we are dismissed as lazy or precious if we spend more than a couple of days in bed with flu.

Proper rest at the first signs of a serious virus could help prevent CF.

@StuntNun my cousin recovered from ME/CFS after nearly dying from meningitis. There was a delay in getting treatment cause she got fobbed off by A and E first time because of her ME/CFS. She ended up in ICU. She took weeks to recover, but rather then dipping or plateauing she kept improving. She’s now back working. She wondered if it was effectively an immune system reset. The other option was she was pumped full of antibiotics, anti virals and steroids and she wonders if she had some low level virus which was killed by all that.

@LillyDeValley how awful for your cousin to get so ill especially with medical negligence playing a role. It's interesting that there's another example though.

I wanted to comment on this as I first commented on it in July last year and my life is completely different now and wanted to share my experience incase it helps others.
I am a nurse and caught delta strain of covid in march 2020 working in a covid assessment unit. Within 5 days my body was covered in psoriasis, I had glomerulonephritis and for 2 years after I had horrible fatigue, joint pain and the psoriasis never went away. I'm 31 and my life was destroyed, I could work but do nothing else as i had zero energy, no quality of life. Couldn't do the dishes, couldn't clean my house. Sleeping 12 hours plus daily and still tired. Had to go part time. Felt horribly depressed and exhausted.
Anyway I started low dose naltrexone last July and feel that was the starting point for everything changing. Within 2 months I felt a bit better but was still having crashes and wasn't anywhere near where I was pre covid. In September I had 23andme gene testing and this changed everything for me (I found out I have a coeliac gene and cut gluten completely didn't bother with testing) my joint pain was gone and I felt better but still not normal. I used my raw data from 23andme and put it into nutrahacker for a detox and methylation panel and this is where EVERYTHING changed. I learned about methylation in depth (please do this). I am the worst methyorlator you can be - MTHFR c677t homozygous, so I barely make any of the enzyme needed for methylation. Please read dirty genes by Ben Lynch it explains everything! It's on amazon. Since February I have been taking high dose methyted b vitamins (hydroxy b12, methyltetrahydrofolate and b6 in p5p form) , liposomal glutathione, avoiding any enriched foods and maintaining strict gluten free. I feel REBORN I have more energy than I had pre covid! Joint pain gone, psoriasis gone , blood in urine gone, brain fog gone, FATIGUE GONE, insomnia GONE which makes sense when you learn about methylation effects on neurotransmitters! I am so happy, i feel fantastic. I lived years with those health problems. I wish I learned all this earlier. I also optimized my vit d3 and take high dose omega 3. I use medichecks to keep an eye on my bloods, don't bother with my GP now. Please read that book and please check your methylation panel via 23andme (you can input the raw data into different sites) its worth the money and may change your life.

Please take this kindly, but you didn't have ME/CFS, you had long Covid that triggered a latent gluten intolerance.
While it's good for you that you've recovered it's not especially relevant here.

@InMySpareTime CF is helped by LDN too. They are considerable overlaps between the 2

By "CF" do you mean Chronic Fatigue (also called Post-viral fatigue), or Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis?
Some CFS/ME sufferers are helped by low dose Naproxen, but not all by any means, and the PP had massive overtones of "miracle cure".
I've had years of people telling me I'll be all cured if I only try <insert current fad cure here> and thus far it's all been hokum.
What works for me is staying in my energy envelope and avoiding crashes wherever possible.
But that doesn't make anyone any money so it can't possibly be a cure/treatment.

Actually CFS is a syndrome and not a disease and is often multifactorial which is what I was trying to highlight. All year I was adding pieces to the puzzle with poor methylation I feel being the final piece. I'm trying to highlight thinking outside the box with regards to immune dysfunction. You can't do one thing when it comes to T cell imbalance. I have major propensity to th17/th1 dominance and completely insufficient tregs in function and numbers. I'm highly read in epigenetics now and strive to balance T cell immunity through gene expression of the correct genes by working with my shitty SNPs. So no, I do not just have a gluten intolerance post covid. That is merely 1 issue in a multitude of problems. I am sharing my experience for those who may have similar genetic profile manifesting with similar autoimmune issues to me. Sorry you've never had answers. I anecdotally now think gene testing and learning about epigentic changes altering gene expression is the starting point to improvements. This is just my opinion @InMySpareTime good luck.

@InMySpareTime I am not peddling a miracle cure. I am gaining nothing from this post other than thinking a young woman with th1 dominant immune issues may read it and start in a similar journey to myself. Or she can do nothing and become one of the 'unfixables' who do nothing to help themselves.

And gene expression is highly relevant in the context of CFS/ME soo I completely disagree that my experience is irrelevant here. I have far more gene varients that are creating issues with immune homeostasis than I listed here but I'm not about to talk about all of my gene varients/issues. I am trying to provide an alternate route of knowledge/exploration that may be beneficial to SOME people here. If you find no benefit fine , but no need to be rude. Although I don't take it personally given the link with CFS and clinically endorphin deficiency. FYI, LDN can potentially help with that, if you research its mechanisms of action. Good luck.

Oh bore off. There is NO CURE for myalgic encephalomyelitis. Your comment of 'unfixables' is absolutely infuriating. Sufferers of this horrible syndrome are not ill because they did not try hard enough. Don' try and blame people for an illness out of their control. Even the healthiest, hardest working athletes have fallen victim to ME. Chronic Fatigue as a symptom, sure you can try different things to alleviate it. But actual CFS/ME cannot be 'cured' and must simply be lived with. Saying people who have it are not doing enough to help themselves is so deeply hurtful. It sounds like as a PP said, you did not have ME, and your advice is misguided and harmful.

Lol I don't know why all you long term sufferers think you can gate keep the umbrella term for a collectipn of symptoms. CFS that has poorly definable characteristics, no defined biomarkers and very poorly understood and varied underlying mechanisms. Who are you to say someone doesnt have ME, its a collection of symtoms lol with different underlying mechanisms between sufferers. I'm sorry but you can see why the stereotypes exist within the medical communities regarding this patient group after reading these comments lol. Good luck to you, ill be off enjoying my life and health. Enjoy wallowing in your misery. Tried to share my experience here with the view to individualising a management plan based upon individuals underlying varients and generic propensity for disease, immune dysregulation, etc but I won't be back to comment further. Good luck with pacing for life @shepherdlincoln

You absolutely can recover, OP, and many people do.

I had what I think is quite a common experience: fell ill very suddenly after a few days of having a sore throat. I was working ridiculously long hours (I was a workaholic) and was also under a lot of other stress.

I went downhill rapidly and was off work for six months. As well as the weakness and exhaustion, I had lots of weird symptoms, eg confusion, memory loss, altered sense of smell, loss of feeling in my fingers, digestive problems, hypersensitivity to sudden noises, various other odd things that I would have thought were unrelated if I hadn’t only had them while I had ME. Like you, I was single, but friends and family helped out.

When I ran out of sick leave I was feeling a bit better and was allowed to go back to work part-time, working partly from home. At first I felt worse, but not quite bad enough to stop me working, which I managed by doing literally nothing else.

I gradually started regaining strength, and within about the next six months, ie a year after it started, I was working nearly full time, though much less than my previous workaholic hours and still partly WFH. Within three years of it starting I was about 90-95% recovered. I still took things easier than before, and had a few relapses but these didn’t last long.

That was decades ago, and I’d say I recovered fully over the next few years. Best of luck, and don’t give up hope during the low patches.

You really can't tell someone they didn't have ME/CFS. That's so offensive and invalidating.

Seems to be common on this thread that the long term, current sufferers tell those who have been diagnosed and fully recovered that they didn't have it.

Except that poster said they turned out to have a different condition.
ME/CFS is what you're left with when all the other fatigue-causing conditions are ruled out, so it's not actually offensive to say they in fact had something else that was misdiagnosed as ME/CFS.
I would love to find out I have actually got a different condition that is curable or at least treatable, but after very extensive testing (that included testing for gluten intolerance) I do not.
I find it offensive to be repeatedly told that I don't know what ME/CFS is, from people who had different conditions that included fatigue as a symptom, and recovered from that symptom once the other condition was treated.

I do take the PPs point that people should keep searching to find out if they have been misdiagnosed with ME/CFS though, as testing develops there are are always new developments to find out if you have another, treatable condition.
I understand that accepting the diagnosis looks like "giving up" to most people, but constantly fighting is exhausting and sufferers need that energy just to live.

I can sympathize with the "too tired to keep pushing for investigations" approach, but one of the key "routes to recovery" is clearly the discovery that the individual actually had a specific and treatable condition.

CFS being a bit of a bucket diagnosis/diagnosis of last resort means there will always be people coping with it who actually have something treatable

(And I hope in time that will apply to all people with CFS - because I don't doubt the reality of the fatigue, you just need more research so the various underlying causes are understood)

The NHS really doesn't help with this though. Since my diagnosis (which took only a year because I got a lot of tests via BUPA that the NHS wouldn't routinely do), I've been offered Graded Exercise Therapy (which made my condition much worse and has left me with very limited mobility) and CBT to help me think away the fatigue and pain.
After the CBT finished two years ago I got no follow up and have not even been invited for a checkup or offered any pain relief.
The only way to get in to see a GP is to log onto the system at exactly 8am and hope your request makes it through the gatekeepers by 8.05, then find a way to get to the surgery at whatever time is allocated.

Oh I completely agree. And actually the lack of curiosity from doctors about what was causing my fatigue cost me 5 years where I gradually got more and more unwell. And meant that a treatment option (operation to remove thymus) that could have led to remission was no longer available to me.

So it's doctors /NHS who need to pick up this fight, for sure.

It's infuriating they are pushing CBT. Imagine suggesting CBT for a broken leg, or heart failure! Fine as an adjunct to help cope with the life changes, not fine as the remedy