Any ME/CFS recovery stories?

[Psm92]

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

Yes, I have had a few well meaning friends/colleagues who suggested I might have stress. FFS 🤦‍♀️ My mum had similar issues to me, and was accused of being a yuppie 😂😂 Single mum of two and a student at the time.

Yeah, so helpful isn’t it - or the people who have watched an article on loose women or this morning and want to tell you that all you need to do is drink some goats milk - I also find the yuppie flu thing hilarious. I got ill when I was 10 - not sure what 1980’s progressional dramas could have affected me!

Sorry I also realise that (my very real) cognitive impairment has made me write progressional rather than professional

no two cases are the same i was diagnosed at 14 and was pretty much house bound school part time very limited social life im now almost 39 and although i am recovered enough to work full time i have collected a pile of additional auto immune conditions and allergies and have a pre bed nap pretty much every night just to function

Neither is it good to discount peoples recovery and suggest they were misinformed in the first place. That is just as equally nasty as discounting the illness.

It certainly isn’t easy. Doctors don’t know everything. The mind is a powerful healer. Each and every one of us has access to that power.

Completely wrong, did you mean to be so incredibly offensive? Dismissing someone's lived experience is hugely inappropriate.

I had a series of awful virus inflections, I had glandular fever, shingles, and was bedbound. I just never got any better. It was horrendous and ruined my life, I was in a wheelchair when not in bed.

Just brushing my teeth would lead to exhaustion and muscle pain, I was sensitive to light and noise, couldn't even handle the TV being on. I was first diagnosed with post viral fatigue syndrome, then officially ME a few years later.

I had repeated tests for everything under the sun, and they all came back clear. I saw umpteen specialists and was involved with a few of the ME charities; I had ME and it took away my life.

I am 100% recovered, like most are. It is true that many don't recover but you can recover, you can get better, and it's far better to focus on the positive stories than feel worse reading the 'never got better' stories; who wants to have no hope?!

I now have an incredibly active life and I am grateful every single day for what I have. I never, ever want to become chronically unwell again so I do everything I can to stay this way! Good mental health as well as physical is vital - stress I think has a huge impact for ME sufferers regarding symptoms being triggered/worsened.

What context would you like? I don't think there's a one size fits all with ME, I think it's very individual and there are many factors at play. How I recovered may not work for another sufferer, and vice versa.

It's a fact that I had ME, and I now run ultra marathons. Did it happen overnight? God, no. Have I had setbacks and regressed along the way? Of course. Do I still freak out when I get a cold or when I had covid? Very much so, and my heart goes out to anyone suffering.

But dismissing my experience simply because I got better is very hurtful and completely pisses on how hard I've worked and all the years of hell I lived through.

Yes. I fully recovered after being housebound for several years. Agree with RubyPip that there is a weird trend by some sufferers to refuse to accept the stories of those who got better.

Sorry I realised I'm putting words into your mouth there rubypip, that's not what you said.

Anyway I have had a similarly full recovery (though not the ultramarathons, lol) but have also found some people oddly keen to dismiss that experience.

I agree, and I've heard it before, sadly. I lost a few friends from the ME charity who for some reason didn't want to consider being in touch with anyone who had recovered.

I think for some sufferers, having ME becomes entrenched in their psyche, part of their identity, which I do understand. And it must feel very unfair to see others improve when their symptoms aren't getting better.

Not at all - I've cross posted in agreement!

I'm so glad you had a positive outcome too, and I should say, the ultras were a huge surprise to me! All started with 5 second jogs. I am not naturally sporty but I give it my best.

I honestly think if I hadn't had ME, I wouldn't be doing any of the activity I do now. I vividly remember when I completed my first 1 mile run while in recovery, I sobbed and sobbed. Slept for 5 hours afterwards. Then first 5k, then 10k etc, each milestone was another victory for the wheelchair-bound poorly version of myself. To think I nearly took my own life, while now I find joy in each day.

To think I nearly took my own life, while now I find joy in each day.

Really glad life is good for you now 😊

I'm so sorry to hear you've been so unwell. My 15 yr old daughter was diagnosed with me/cfs 15 mths ago. She's been through hell. Bedridden & cld barely speak. We've tried lots of things & spent lots of money. Absolute game changer was finding Raelan Agle's channel on youtube. Her site is packed full of people who've recovered from me/cfs & long covid. My advice wld be to listen to the interviews- it gives hope & u get lots of info.
After listening to hundreds of revovery stories we went down the brain retraining route. There are lots of different programmes. We chose the Lightning Process. Of all the things we've tried, this has been the ONLY thing to make any difference. It's been amazing. She's not fully recovered, but I would say is at about 75% of her former self. Everybody is different, & what works for one person may not for others though. My advice would be to expose yourself to positive stories & go from there. Besides Raelan Agle, Heal with Liz, and the Chronic Comeback with Phil are excellent channels on youtube. Best of luck x

Well said. And your original post was extremely encouraging.

I used Health Kinesiology, acupuncture, friendly bacteria and melatonin
I have been reading lately that Perrin's oesto technique can help its about lymphatic drainage of the spine and brain to rid these areas of toxins

Friends of mine found The Optimum Health Clinic in London (online) to be very helpful. One of them is, I would say, 80% recovered; another is back to living a fairly normal life but with a much better understanding of how much rest she needs and how to listen to her body.

Im 95% recovered from long covid that came with a lot of cfs- like symptoms (plus a lot of others). I took a shit tonne of suppliments, including adrenal support suppliments as my cortisol levels were really low (this is now shown to be a marker for long covid). I also found graded exercise therapy really helpful which is a no-no with m.e. so am not convinced long covid is the same thing (lots of long covid sufferers find graded exercise helpful).

It's not necessarily a no-no with ME. I would say it was one of the key factors in my recovery. It was extremely slow and carefully graded though, not just "go out and exercise". More like "get to a stable place through pacing, measure exactly what it includes, then increase by 10% per week". Which was miniscule to start with (e.g. walking in the garden for 22 paces rather than 20 paces) but adds up to recovery in the end.

My story is similar to yours too, @Onlyjoinedforythis and some others. I've done a lot of reading over the years and tried things, with some success. One thing I've noted is that many people seem to get ME following a viral infection. However, this seems to be more like Post Viral Fatigue Syndrome, which is notably different because most recover from it. I believe doctors are lumping them all together (as they used to with ME and Fibromyalgia) so you get this disparity where some are coming out of it after a few years but others just get worse, slowly or otherwise. Mine (and others who don't get better) seems to be more an auto-immune cause; I have suffered all my life, and my whole family has some symptoms of AI.

I also agree with you about the additional struggle, what with people not believing me / the fight to get diagnosed / the belief I'm just not doing enough to combat it; but also there's the constant fear I will overdo it one time and not be able to get out of bed. I'm in a crash at the moment, from visiting my children over november, dec and jan. I tried to spread it all out but it's still got me. OP there is some good advice on here; another bit of reading could be Dr Sarah Myhill's books, google will find them for you x

'for some sufferers, having M.E becomes entrenched in their psyche, part of their identity'.

No.

Some people(and I'm not even referring to myself here, I'm referring to the many sufferers worse off than I am) just have such a severe experience and long drawn-out deterioration, or even just continuation of the state of the suffering, that there really is no option but to be rather brutally honest and upfront about the realities for many sufferers. When there are many sufferers bedbound, emaciated, being fed through a tube, and their bodies are slowly shutting down, you cannot dismiss that as 'entrenched in their psyche', and it's incredibly offensive and ignorant to do so.

Positive thinking doesn't cure M.E. In fact, there are no known cures for M.E. One of the major diagnostic criteria in reference to symptoms of M.E is exhaustion that doesn't improve with rest. So, scaling back your activity, and using intermittent periods of rest does not improve the symptoms. It is a method using to prevent the worsening of the condition. It does not improve it.

It's quite likely, obviously, and I'm sure many would agree with me, that misdiagnosis is a massive problem. It's a massive problem because it prevents people who can otherwise be helped, from receiving that help. It also has the impact of blurring the actual condition.

People with M.E do get better. People with M.E do die. People with M.E do suffer horrendously for decades. Alone. With no help. Because there are no treatments that have any scientific backing for M.E.

You cannot expect people not to post their personal experiences, and the very real potential reality for sufferers, because others want some positivity, and in not doing so, it is entrenched in their psyche.

I am genuinely glad for anybody whom has recovered from M.E, because I would not wish it on anyone. I'm sure their suffering during their illness, before they recovered, was absolutely horrendous. The simple fact is that there are plenty of sufferers suffering just as horrendously, and in some cases worse, for decades longer, that despite trying any amount of positive thinking and other remedies will not cure. Pointing this out is not jealousy, it's not becoming entrenched with their illness, it's simple fact. I know of people so desperate to recover, they have taken drugs designed for people with HIV. There is no known cure.

@lifesabitchandthenyoudie

Yes, a lot of people get diagnosed with M.E after a virus. Sometimes the real diagnosis is M.E. Sometimes the real diagnosis is, and should have been, Post Viral Fatigue syndrome. So I would agree misdiagnosis happens a lot.

From the NHS: 'In a small number of people, post-viral fatigue can develop into a longer-term or chronic illness known as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).' They are not one in the same, but are too often, confused as such.

This isn't to say anybody here was misdiagnosed, we don't have their medical history, are not doctors, and even doctors get it wrong, frequently. It's just pointing out there is a difference, and it happens.

Reading stories of recovery hugely helped me and kept hope alive, there's nothing wrong at all with keeping as positive as possible.

Best of luck OP, there is some great advice here!

When I had it, I believed that it was physical, and that any suggestion it was psychological was deeply offensive, and dangerous to me, because it meant people would stop giving me the support I needed.

Well, I call, with the greatest sympathy, bullshit on my past self. For me, it turned out to be a deeply complex psychosomatic illness. I was unable to see that. Psychosomatic means I was genuinely physically ill, I couldn't just get up and go for a run, but that physical illness was caused by immense stress from several psychological factors. Psychosomatic illnesses are highly highly stigmatised, even more so than straight mental illness, but for me that's what it was. There were very complex factors including burnout, family emotional dysfunction, and PTSD from unacknowledged childhood abuse.

Some sufferers act like I'm saying that it can all be cured by positive thinking. No, that's a straw man argument, it was infinitely more complex than that. Getting the right expert treatment, and a lot of very painful work over several years, have or my life back.

*Gave me my life back

Following with interest. I was diagnosed a few months ago.

dh was given a diagnosis of chronic fatigue but it turns out what had actually happened was he had a series of small strokes. Medication to reduce the risk of another one happening caused a rapid improvement in his energy levels. Still lower than what you would expect for a man of his age but massively improved from where he was previously. I wonder how many others who have been given a CFS diagnosis are actually suffering from a diiferent problem like dh.