Less likely to recover after three years? Is this true?

[keepswimming]

A couple of times I've heard people say that you're less likely to recover once you've been ill with ME/CFS for three years.

Does anybody know where this has come from? Is there any evidence or is it anecdotal?

I've been ill three years this month so I've been thinking about it, and it recently came up on another thread too, so I'd be interested to hear more.

Thanks everyone.

 

[lenora]

Hello @keepswimming....I can only give you my experience....I know of no studies as such.

I've been ill with ME for approx. 40 yrs..+-. My guess is that I was having symptoms of the illness long before I received a diagnosis.

I also have FM in addition to the ME. Until about 2 wks. ago I was actually doing better with my FM problems....swollen glands disappeared in what seemed like overnight. Unfortunately pain didn't go with it. So in my case, some things have changed place with something else.

Because of an accident I now have all of my FM symptoms back big time. I'm hoping they'll eventually lessen considerably. I hope yours will disappear with time also. (But much shorter time.) Yours, Lenora.

 

[maybe some day]

Hard to say, as each person is different. After 5 years, I was in near full remission, then crashed 2 years after that.

It's very likely you will improve over time. Full recovery is anyone's guess. Wish I had a better answer for you. Personally I've known folks that cycle up and down, but haven't seen any fully recover

 

[hapl808]

I have been sick for 25 years. First 5-10 years were frustrating but manageable with some significant life changes, then five years of moderate level that was pretty debilitating with a lot of crashes, then five years of decent recovery and functioning, and now five years of housebound/bedbound.

In short, who knows. I don't think anyone can give an accurate prognosis as every case is different. But times of taking stock and thinking about the future or lack of future is pretty normal and difficult with this type of illness.

 

[BrightCandle]

The two figures I roughly remember from studies of this are that most post viral sufferers recover within the first year, about 80%. Past that year at the ME/CFS stage you have about a 5% chance of recovery. I saw some more granula data on Long covid recently which was making an initial cut at 12 weeks showing actually almost all of that 80% is actually within 3 months but once it was persistent the chance of recovering was low.

There was a study linked here a few weeks ago about recoveries being mostly people adapting and that they still had life changing reductions in energy and function. Its not common anyway.

 

[godlovesatrier]

So post viral fatigue is extremely common - for some reason nobody ever talks about it not sure why. Anyway it lasts about 6 months and can occur for all sorts of reasons.

If it goes beyond 6 months it's more likely a disease or possibly ME/CFS

Now on the Facebook groups there was much mention of this 3 year rule. Which people stuck to like glue to be honest. I've never really discounted it out of hand. To be fair I went into remission year 2 end of and then crashed into my current state after a general anesthetic. So maybe it's possible? But life events of any kind fu** us up don't they? Sorry to be crude. So if we hit a life event I think we've got that to tackle.

Of course don't forget hips recovery thread which lists dozens of people who went into remission or had big improvements in health long term at all sorts of different points in thei recovery.

Figuring out what's actually wrong with us is I think most of the battle.

Hope your doing ok I know you've been working part time.

 

[Bergkamp]

So post viral fatigue is extremely common - for some reason nobody ever talks about it not sure why. Anyway it lasts about 6 months and can occur for all sorts of reasons.

If it goes beyond 6 months it's more likely a disease or possibly ME/CFS

Now on the Facebook groups there was much mention of this 3 year rule. Which people stuck to like glue to be honest. I've never really discounted it out of hand. To be fair I went into remission year 2 end of and then crashed into my current state after a general anesthetic. So maybe it's possible? But life events of any kind fu** us up don't they? Sorry to be crude. So if we hit a life event I think we've got that to tackle.

Of course don't forget hips recovery thread which lists dozens of people who went into remission or had big improvements in health long term at all sorts of different points in thei recovery.

Figuring out what's actually wrong with us is I think most of the battle.

Hope your doing ok I know you've been working part time.

Do you perhaps have a link to that thread? Thank you.

 

[godlovesatrier]

https://forums.phoenixrising.me/threads/list-of-me-cfs-recovery-and-improvement-stories.80502/

 

[5vforest]

It's just something people say. Nobody really knows or has collected that data, at least not that I have seen.

 

[keepswimming]

Thank you for your replies everyone, and your personal experiences. It sounds like (as with most things with this illness) it's a case of wait and see! But I'm glad hitting three years isn't necessarily the life sentence I'd built it up to be in my head!

Hope your doing ok I know you've been working part time

Thank you @godlovesatrier, so kind of you to remember I gave up my job of thirteen years in June, I had dropped my hours to 8 hours a week and my amazing employer had made every accommodation but it was too much. Now I'm working two hours a week from home, teaching online, and I've also set up a little online business selling gift hampers. I'm coping with that OK. It was a grief process to leave a job I loved, but I'm grateful I've been able to put my health first. Perhaps now I can pace properly improvement might come... But even if it doesn't, its such a relief not to be pushing and crashing every week!

 

[godlovesatrier]

I can only imagine how horrible it was to leave the job you love Working remotely for me is really the only thing allowing me to work full time. I went downhill in late 2019/early 2020 before the pandemic began, no idea why that happened but I think it had something to do with not taking any immune stimulants or strong natural antivirals anymore - I think this ultimately allowed nasties to proliferate.

At any rate working from home does help and I am so pleased you've got some small hours to keep money coming in.

Yes crashing constantly is a horrible horrible experience. Well good luck to all of us, take care.

 

[valentinelynx]

I no longer recall the source, but I developed the belief somewhere along the way in my 29 years of this illness, that the breaking point is 5 years: recovery is most likely within the first 5 years of illness. Perhaps that was refined to 3 years at some point; I don't know. And I'm aware this opinion is pretty useless without references! Still, I experienced a dramatic and sudden remission of symptoms at 4 ½ years, to about 80% normal function, which made me a believer in the 5 year breaking point. It was enough for me to finish med school and residency without breaks (but with as much rest as possible, admittedly not much ). I wasn't good to myself, though, pushed too hard, and relapsed 12 years later.

 

[keepswimming]

@godlovesatrier I'm sorry to hear you've gone downhill I'm glad working remotely allows you to continue with your job!

You too

 

[keepswimming]

@valentinelynx thank you for your experience. Amazing to hear about your remission at 4.5 years. It would fascinating to know what is really going on in our bodies... And it gives me hope... But so sorry to hear you relapsed again it must be really hard not to push too hard when you feel a bit better.