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.

@TrackTrack I am so glad you recovered. But surely you're not suggesting that those who don't get better (which, according to available research, does seem to be a very large percentage) don't get better because they don't want it badly enough? Did you will yourself into recovery? Also, it's generally understood that children and teenagers have a much higher likelihood of full recovery than those who become ill as adults.

Not trying to have a go, and I appreciate your response, but it's dangerous myths and misconceptions like these that keep people sick, by preventing the medical establishment from considering ME/CFS as a serious illness worthy of research.

I had it 30 years ago and made a full recovery. I fell ill suddenly after a trivial-seeming throat infection, and was off work for six months. Then ran out of sick leave and had to return to work. I was very lucky with my employer: allowed to work partly from home, which was unusual back then.

Like you, OP, I was single, but friends and family helped. My brain had turned to mush so I didn’t worry much. But yes, it was lonely and discouraging when I thought about it.

Within the year I was back to full-time work, though couldn’t go out much apart from that, and slept much of the weekend. Gradually got back to normal during the next six months or so. Had occasional relapses, usually spring and autumn, getting briefer and milder every time. Three years even that was all in the past.

Onwards and upwards, OP! Best of luck xx

Three years from the the start, even that was all in the past.

I do think there's a mental/psychological component for some sufferers, for sure. Recovery can be incredibly hard. For me, coming off of benefits and taking a huge gamble trying to work again was tough. I didn't know if I'd relapse and end up much worse off - I know a friend with ME doesn't want to 'get better' as the benefits and life she's created suits her now. It's such a part of her identity.

I also 100% believe there are many individuals who suffer with ME/CFS who are desperate to get better and the medical profession are letting them down. Symptoms are not believed or they're diminished, it's not very well understood, and I think ME/CFS is used as a diagnosis when GPS are at a loss as to explaining symptoms. It's this big umbrella term and SO much more research is needed. I do wonder if a percentage of those diagnosed with ME actually have something else going on, as a primary illness, but diagnosing ME stops further investigation.

It's complicated - some I've known have said it's an autoimmune disorder, others say it's a long term viral illness. I don't think ME/CFS is the same for anyone, with varying degrees of severity.

It's not an illness that's in someone's head - I was bedbound for years and my symptoms were very real. But I think I'm trying to say that some sufferers become locked, almost, and no wonder really - it's a debilitating illness and once you've relapsed/pushed yourself a hundred times, it can be tough to get the mental power to keep going.

I was lucky, the right diet/supplements/mental attitude/environment combined so I could recover. It's not just one thing, but a complex set of situations. But I do remember reaching a point and thinking right, I have got to do this, otherwise I'll have no life. Of course I didn't will myself better, it didn't happen overnight, but I used that will to make a lot of changes that in time did lead to my recovery.

I hope that makes sense! I'm certainly not enforcing the negative myth of 'yuppy flu' or 'just try harder' but I also acknowledge how your mental health and outlook can hold you back - for some sufferers. No one has the same experience/trigger/recovery route, as such.

this is right up there with people telling sufferers it’s all in their head.

I DO want to get better. I’ve missed most of my DC’s childhood. I went from being active and working out 6 days a week and working full time to practically being unable to get off the sofa.

I’m so angry at the opinion that I feel like this because I don’t want to get better.
I don’t claim benefits, I work very part time- because that’s all I can manage-but I’m already in bed because I can’t even sit up on the sofa after being in work for 2 short shifts this week. I can’t cook a family meal, see friends, go out anywhere. Half the time I don’t even have the energy to eat a meal or have a shower after work but according to you I’m happy my life is over even though I’m in my 40’s. Nice.

@ThinkingaboutLangClegosaurus So sorry to hear you've also suffered with this but so happy you fully recovered and it's all in the past. Given I've already had this for a year, 3 years doesn't see so long now, if I could be certain it'd go away. Do you feel there was anything specific that aided your recovery?

@savebuckbeak - yes, it's the fact that I can't do more than 3.5 days straight without crashing, so having a half day off in the middle of the week makes sure I only do 2.5-3.5 days in a row. When it seems like I should 'just' push through that extra afternoon, I have to remind myself that taking a half-day off now is far more efficient than missing 2-4 entire days' work in the following week. And because I just add an extra hour each day (including the half day), I'm still working full time, just with an extended break during which I sleep in the middle.

not use your ME as an excuse for anything, ever

See, this is problematic, as it can be interpretted in several ways. I have to use my ME as an excuse to not work 4 days straight, because I'll crash if I don't. Or to say I can't go to XYZ on the weekend or evening or whatever. In the worst situations (like I got myself into trying to finish things off before this year's Christmas break) I physically can't stand or walk, and find myself crawling between the bed and ensuite for a week. But if you mean not use it an excuse for ambitions, this can be partially true. For example, I've managed to get myself a secondment at work that I'm very happy with (and came with a bit of extra salary! :) ), and I didn't let CFS/ME be a barrier as in thinking 'I can't do that'. If I manage it properly and don't mess up like I did at Christmas too much, I should remain okay. But my line manager there is now talking about what I might want to do next, and one of the things he suggested is a role that all post-holders have said takes 70-80 hours a week to actually do. There is no way I can do that. In the past, I've chatted with some about how these roles are simply not available for those with disabilities and that this is a problem, but I doubt that's going to change any time soon. I don't doubt I could handle the responsibilty, but I know I can't handle the actual time input required. My condition has made me be particularly efficient (other people in my same secondment are struggling to get things done during the working week, but I just have to), so I would guess I might be able to do it in ~60 hours, but that's still a good 20 hours more than I could manage on a continuing basis. So a level of realism over what is possible within your limits is needed (I'm lucky in that my maximum output just about matches up with a regular working week, so I have a wide range of possiblities; others are not so lucky).

I've been trying to remember! I tried various remedies -- think I took evening primrose oil for quite a long time, but I can't be certain now. I went on the Hay Diet, which is basically about having carbs and protein at separate meals but not together. That very much eased the digestive symptoms.

I made a mistake when I posted before: I've realised I was off work altogether for 8 or 9 months. Don't know how I got away with that! but it was a small friendly company so I think they were just very generous.

Unlike many people, I tried to push myself a little --- gently, not ignoring pain and tiredness. At my worst, I managed to have a shower and dress each morning, even if that was it for the day. Being ill and alone, I needed to keep my morale up.

I have hesitated to mention that because I know people who feel very strongly that they need to keep within their limits. They say graded exercise (slowly increasing the amount you do over a period of time) made them worse or even caused a relapse. I can only tell you what seems to have worked for me.

One weird thing: I had been pretty healthy on a mainly vegetarian diet before I got the virus. A few months in, I started craving and eating meat, lots of it. I've never given it up since then. And I recently read a study suggesting that some people with ME lose the ability to make energy from carbs, the normal way, but their bodies adapt and get the energy (less efficiently) from protein. Sorry I can't find the research now; I'm pretty sure it was in a medical journal but I can't now dig it out.

If I can think of anything more helpful, I'll come back and post it. I know ME is real but I also know I recovered and have met others who have recovered too.

Best of luck, OP. Feel free to PM me if you like, and I'll PM you back. xx

PS: A lot of the reason there is so little useful research into ME is that it's been bundled in with chronic fatigue syndromes (CFS), which are not the same thing. So studies have been flawed by the fact that what may work for a CFS may not work for ME, but the results will just seem to show that this remedy/ intervention/ whatever doesn't work on many people.

I was diagnosed with it in my early 20s in the late 1980s, not bedbound but aching/tingling limbs, brain fog and fatigue. I managed to keep studying then working full-time (had no choice really) but often had to collapse into bed at weekends to recover. I got no help from doctors but did manage to improve my diet, including cutting out wheat and caffeine and taking various supplements. I started to get good spells and relapses (especially if I overdid things or caught colds/viruses) but bit by bit the good spells got longer and the relapses got less bad. It took about 10 years to feel that I was over it but I did get there.

I had it for 2 years. Couldn't pick up my kids from school, some days couldn't shower, couldn't do much.

Then I had my appendix removed. Very next day I was me again.

I was diagnosed with moderate CFS aged 23, which went into full remission 2.5 years later when I was pregnant with my son. I am totally convinced that it was due to pregnancy-induced immunosuppression (which can also cause remission in other autoimmune conditions like lupus).

5 years later and I am still 80-90% recovered.

I'm glad you got better but 'not making it an excuse' is total bullshit. It's not a psychological condition. That's like saying "if you try hard enough your cancer will go into remission."

Part of living with and recovering from ME/CFS is accepting your limits and working with them.

What usually makes people ill initially is trying to power through - which doesn't work.

Maintaining a positive outlook is a good thing, but you also need to live in reality.

I fully recovered, from housebound, and have now been well for a decade :-)

I know it goes against what a lot of patient groups say, but I was cured by graded exercise and psychotherapy (not just CBT) with an extremely good therapist.

I now see my cfs as a psychosomatic stress reaction, due to having quite rigid coping mechanisms, rooted in a very dysfunctional upbringing which I was unable to acknowledge anything wrong with at the time. This was then exacerbated by physical deconditioning the longer it went on.

I had CFS symptoms (never officially diagnosed) severely from post-viral glandular fever when I was 16 running through more periodically to my mid 20s at least. For years I would feel suddenly dragged down face-first and would fall asleep in the middle of activities, I generally had a lethargy about me and felt "heavy" a lot of the time; IBS kicked in around this time too so my stomach felt like another dead weight. But it's difficult for me to know where my anxiety/depression ended and the CFS began, as I had a lot of childhood trauma which perhaps exacerbated the condition.

Anyway, Paleo diet combined with CBT helped hugely. I went off the Pill and did a sort of mind and body reset. I saw results within weeks. Now I rarely get sleepy in the day and if I do it's usually because I'm ill with an actual virus rather than my immune system being fucky.

I suspect that in fact the group they call CFS/ME probably has a number of different clusters within it - as a catch-all for 'something's wrong that makes you tired but we don't know what'. I also have dysautonomia, which predated my CFS/ME diagnosis, but also has very similar symptions and is also often comorbid. But I'd had that diagnosed ages ago and the things that help it are different than the things that help my CFS/ME (sometimes annoyingly in conflict, so I can help my dysautonomia only up to the point PEM might kick in, for example). With such a concatenation of different conditions, and so many people dismissed as not having problems (like I was for 5 years), no wonder it is difficult to make sense of.

ME is not a psychiatric illness. It’s a physical illness. Therapy will not make you better.

Sufferers of ME have had to carry the stigma that ‘it’s all in their heads’ / ‘yuppie flu’ for decades. Don’t perpetuate this myth. As substantiated by NICE, ME is a physical illness.

It is a physical illness yes but you are much more at risk for it if you have a history of complex/developmental trauma. Unprocessed trauma literally wears your body down. Learning to release the trauma through therapy can help lessen the symptoms

@UnimpeachableBravery It is a physical illness yes but you are much more at risk for it if you have a history of complex/developmental trauma.

Evidence for this? Or did you literally just make this up?

Stress and trauma do make you more vulnerable to physical illnesses. It's well documented. It's not made up or saying the illness is in your head (speaking as someone who was diagnosed with ME and is very much aware that it's real).

(Sorry just saw the message about therapy. Yes, therapy isn't a treatment. But chronic stress can lead to chronic high cortisol levels/stress that make you vulnerable to physical illness.)

When my DC was diagnosed, the consultant said the prognosis for young people who are diagnosed with CFS is much better than for older people and that most who get it while young do eventually recover.

There have been ups and downs, but four years on they are about the same as they were at the time of diagnosis. They have learned to manage their condition really well, having taken onboard the advice to avoid the boom-and-bust cycle. All of their bad spells have been linked to overdoing things. The only therapy they have found helpful is assertiveness! ("No I cannot 'just do a little more', please find me a chair because I cannot stand in this long queue, yes I really do need to go home right now, sorry I am not well enough to look after your dog while you're away.")

We're optimistic, however. I think now so many people are affected by long Covid, a decent amount of money will finally go toward researching the condition and hopefully effective treatments will be discovered. And it is a relief that people now finally recognise it as a real illness.

@APurpleSquirrel Your story pretty much mirrors mine diagnosed at 14 managed uni and have a full time job i dont feel the need to mention the me to new people anymore as its under control as much as it can be i have developed other auto imune conditions since diagnosis and if they flare it does trigger a bit of a relapse but its only short term

I am close with a family where two people had it for 8 years - both fully recovered and if you didn't know, you would have never guessed that they had it. Another family friend had it for 4 years and is now fully recovered - just saw her photos from a hiking trip in Austria.

My mum was diagnosed in her early 40s - she was bed bound for several years and used a wheelchair whilst out when she was at her worst. She's now mid 60s and is able to work part time in quite a mentally challenging role (about 10 yeas ago she really started to make considerable progress and was able to study and retrain).

The problem with ME is it is an umbrella for so many different symptoms; some people just get thr overwhelming fatigue, others get neurological symptoms. My mum falls into the latter category and these symptoms resurface when she contracts a bug/ is under stress.

So whilst some recover completely, I would say the ones who have more severe symptoms, like neurological issues, are less likely to recover fully; however, even in those instances, like my mum, she's got so much better than she was and is able to lead a full life so there is definitely hope for people who are very badly affected.