ME/CFS progression in years and stages

AliceLily

AliceLily

Senior Member (Voting Rights)
I'm interested to know how your ME has progressed in severity levels over all the years you have been sick.

For easier reading can you write first the amount of years sick with ME, how long each stage and severity level. Thanks.

For me:

26 years sick.

Progression:
Mild with severe cognitive symptoms, but on downward spiral (6 years).
Very severe (2 years). Diagnosed with ME.
Severe (10 years)
Moderate (8 years....)

Just wondering how many others have had similar to me, but interested in how it has been for everyone else too.
 
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31 years sick

-PVFS symptoms for first 5.5 years (no cognitive impairment)-
-mild with no OI for 4 years
-relapse from immune modulators- totally disabled for 3 months - developed OI
-Moderate with reactivating viruses, OI and cognitive impairment 21 years. The OI symptoms are the most debilitating.
 
10 years

1st year declined from mild/moderate to mod/severe
3 years severe with further creeping decline
1 year improving (I took an anti-retroviral drug)
6 years mostly at mild/moderate again but with some random better/worse weeks/months.

PS Never been consistently well enough to work, but if rested it can seem like I can “do stuff”.
 
2001 Chronic Fatigue misdiagnosed as depression.
2002 Had to repeat year 1 of college.
2003 Had to drop out of college.
2005 Insomnia that gradually got worse.
2007 ME that got progressively worse. Had to give up going to the gym, playing guitar and keyboard. Could not work.
2008 Misdiagnosed with Fibromyalgia. Driving short journeys caused permanent worsening.
2012 Had to start peeing in to a bucket in my bedroom to save journeying to the bathroom.
2013 January, could no longer get to the bathroom more than 1 in every 6 days without causing permanent worsening (due to steps). Had to start pooping in to bags.
2013 August. Moved house. Became bed bound except for getting to the bathroom for a poo. Had to pee in bottles. Called 111 to get admitted to hospital and misdiagnosed with Somatization. Was eventually awarded social care (far too late as the damage was done).
2014 Inappropriate sectioning made me permanently worse. Can no longer talk or get to the bathroom. My ME was misdiagnosed as a delusion, they weren't even pretending to believe me at this point.
2016 Had to start supplementing typing using my smartphone as my laptop keyboard caused payback.
2017 Had to switch to mostly typing using my smartphone.
2018 Had to start typing with my nose using a smartphone.
2020 limited to typing 3 paragraphs a day.
2021 Still no belief from the medical profession, very little belief from carers, accused of lying about symptoms, too afraid to call my GP for anything in case he has me sectioned again.
 
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Currently in my 6th year (very sudden onset, I basically never recovered after the EBV infection).

First 1-2 years: started at my all time lowest, which was the lower end of moderate, then gradually (painfully slowly with relapses) improved.

3rd year: I made a huge improvement and became very mild. I was convinced I was going to recover soon. The disease and symptoms were still present every minute of every day, they were just much milder. (So I was never symptom-free at all.)

4th-5th year: sudden decline, first I was fluctuating between the lower end of mild and the upper half of moderate, but have been definitely moderate (upper end) for a while now.

Edit: The course of my disease seemed to be happening spontaneously, except for the last decline. Shortly before that my very mild ME/CFS made me very confident and I started travelling internationally (in relatively quick succession) and it may have resulted in too much exertion. I'm not 100% sure there was a causation, it is just that that was the only change in my life and the relapse happened just two days after my 2nd trip.
 
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8 years
Onset 3 months after bad virus, which itself was 4 months after my first influenza infection (all symptoms I had were same as ME 7 months later)

Onset over course of one month, fatigue, intolerance to alcohol, chest pressure and ache. Then PEM.

first 2 years moderate with severe crashes. Bad chest pain first year.

became severe after traveling two day CPET.. crashed hard afterwards.
6 years severe, housebound/bedridden.
 
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1993 at Uni EBV and PVF (suspect MECFS started then but activity not too limited)
2005 Chickpox as teacher, went PT but managed 5y.
2011 unknown virus that really reduced function( now fitted full criteria ME) but mild, PEM obvious in hindsight
2014 Diagnosed
2018 Relapse to severe following travel, only then I engaged with pwME and gained understanding
2021 1st Pfizer (only) gave me a boost now Mod-sev. Fluctuating.
 
32 years

12 years mild to moderate physical, very mild cognitive, able to work part time

10 years moderate to severe physical, mild cognitive, early retired

10 years severe physical, mild to moderate cognitive, housebound and mostly bedbound.
 
12 years of ME

but looking back, I was probably already mildly affected for several years earlier (I never had as much energy as the others, longer rest and recovery time, had instinctively developed strategies accordingly, without however preventing myself from practicing outdoor activities or sports for fun).

The year before my official diagnosis: I worked while being moderate, it was hell ...

1st year: moderate, medium level (mainly housebound)

2nd year: 1 1/2 month severe, then return to moderate but the lowest level

Following years: slow progression to "between moderate and severe", closer to severe now
(housebound and bedbound moments, spend 70% of my days lying down).


In short, very progressive ME.
 
21 years, constantly mild with varying degrees of feeling a bit better or worse. I've had quite a few symptoms and sensitivities occur and change or disappear. I managed to cure my PEM, persistent neuropathic muscle aches, and another problem that required treating with T2, and an intolerance for meat fats (took 3 months of carnitine to cure). I've had a sensitivity to proline for quite a few years, but it became more severe in the last year or so. That's my worst ME-related problem at present.
 
8 years
2-3 years mild/moderate, unrefreshing sleep, constant headaches, stumbled through work and collapsed into bed at every opportunity, no social life or hobbies.
5 years mild, slow but significant improvement, no further improvement in last 2 years, but good quality of life compared to most.

I actually don't think I've improved at all really, and could send myself straight back to square 1 by going for a jog. I've just maximised my management to reduce my symptoms as much as possible.
 
41 years

First 9 years mild so managed to stumble through school and college but I was deteriorating over time.
Best part of a year of, at worst, moderate and improving back up to very mild.
Slow deterioration over the next 21 years, I started able to work full time, eventually changed to part time but it was too late and I ended up giving up work altogether mostly housebound.
Final 9 years or so spent how much I actually could or couldn't do sustainably though still mostly housebound.
 
Diagnosed 6 years ago in my early 50s due to worsening from mild ME to increasing proportion of time in moderate episodes

10 years or more? before that undiagnosed gradual onset - mild was able to work part time but with a lot of sick absences. Main challenges preventing diagnosis due to it being seen as due to depression/menopause

Had to take ill health retirement 3 1/2 years ago.

can still get out but not very often at the moment due to the demands of getting my house refurbished.
 
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This will be my 46th year of mild to moderate ME, with a slow initial onset.

I was definitely exposed to EBV the year I got ME, but I never developed symptoms. Two other people I was close to (though not related to) also developed ME, all within a few years of each other.

I was undiagnosed for the first 23 years, and in that time, I had three really good major remissions lasting several years. I was finally diagnosed in 1999 after a monster crash, and haven't had that kind of remission since.

I've had short periods of quite severe illness, but they were caused by a commonly-used steroid medication and wouldn't have been so severe otherwise—I got better once I'd finished the treatment. Mostly I've been somewhere on the mild to moderate scale throughout my illness.

It's hard to be certain about long term deterioration. How do you balance the different symptoms you had at different times against one another? Or negative factors such as other long-term conditions, against positive ones like learned coping skills? I think my assessment would be that, if you took out the inflammatory arthritis, the sequelae of a severe B12 deficiency, and 40-odd years of ageing, I'm no worse than I was at the outset. It's just different.

My quality of life is a lot better, though. I'd choose not being able to walk far over not being able to eat most food, every single time!
 
30 years

6 months mild

Rapid decline over 4 months to moderate/severe mainly housebound - medically retired

Slight movement to moderate/partially housebound for approx 18 years

9 months improve to middle moderate

5 year moderate/partially housebound

4 years moderate/severe housebound.
 
44 years (in hindsight and including remissions)

4 years mild improving to very mild, undiagnosed

16 years of good remission but OI a constant nuisance & PEM blatantly obvious in hindsight, able to do school, work & play but never quite full-time

4 years moderate improving to mild, misdiagnosed

11 years of good remission, similar to previous one but not quite as good

9 years fluctuating initially between mild & moderate before deteriorating step-wise into severe, finally diagnosed about halfway through this relapse

Currently reasonably stable function but I have a sneaking suspicion this might be the result of two factors cancelling each other out: on the one hand a slow deterioration of my ME, on the other hand an improving ability to pace and manage.
 
(Son) 29 years ( now aged 37)
1984 born
1985- severe viral and bacterial infection and allergy
1988- 1992 mild to moderate fatigue and constant viral infections (ME suggested by Primary Headteacher!)
1992-1995- improves with careful diet/nutrition until 11 yrs old
1995-1996- relapsed at secondary school and diagnosed by school paediatrician in 1996 moderate- severe 1997 - and part time schooling
1998 - onwards moderate becoming severe
2000-2001- severe and homebound plus pesticide acute poisoning exposure
2001-2009 - severe and homebound
2009 -2022 severe-moderate with careful restriction and pacing. (I call it walking wounded with ME!
(unable to complete schooling, go to college or work)
 
Thanks for this thread Rosie - I find it useful and I guess different people will draw different things from the various examples.

11 years

3 years - mild to moderate with crashes (some symptoms occurred during this period that went away in later years, e.g. a phantom burning pain in my chest, heart symptoms, etc)
4 years - mild to moderate with fewer crashes due to slightly better pacing; I think living in a hot/dry climate on the equator helped too
4 years - mild to moderate, but now closer to moderate (choose to stay at home 99% of time to avoid flare-ups, strict limits on exertion, able to work at a screen part-time). The deterioration was I believe triggered by starting a family: even taking into account the fact that my wife does 100% of all physical work involving our children (I can't lift anything heavier than a cup of tea), pacing is a chimera with toddlers under the roof!

* As a side note, I'd find it interesting to know how other parents with young children approach juggling parenthood with mild/moderate ME. Every family situation is different, but when you throw ME into the mix all the trade-offs, sacrifices and planning around parenting of course take on greater complexity (not just the day-today childcare but how parents handle finances, employment, impact on children's life experiences of parent's ME-imposed limitations, impact on the relationship between parents of such a wildly uneven burden of childcare effort, etc). Does anyone know of a good podcast or article on this?
 
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