ME/CFS progression in years and stages

29 years post onset
  • initial glandular fever (confirmed active EBV infection), symptoms continued unchanged, on to ME/CFS diagnosis some six months later (GP preferred term CFS because he regarded that as etiologically neutral, though different GPs, Consultants and Researchers have used variously ME, CFS and ME/CFS).
  • oscillated between mild and moderate, for some three years, when I went half time at work
  • over four years steadily improved till the point I believed myself recovered, took on holiday let business in addition to part time job
  • 22 years ago got the Millennium Bug, bad dose of influenza over Millennium new year (virus not formally identified), major relapse and was largely bed bound for two years, forced to take ill health retirement in 2001 from part time job
  • some improvement over several years moving back from severe to moderate
  • oscillated between moderate and mild for some ten years, with relapses potentially exertion related, with a more marked relapse back to severe some twelve years ago, when forced to give up holiday let business
  • oscillated between severe and moderate for several years gradually improving to mild, when I took on two properties requiring renovation.
  • eight plus years ago gradually deteriorated to very severe over six months
  • associated with increased personal support, now oscillate between severe and very severe, though increasing stabilising at severe, and am now able to spend several hours a day out of bed, if able to avoid over exertion
Over the years relapses have been associated additional symptoms and increasing severity, with any subsequent remissions being slower and to a lower recovery ceiling.

In the past remissions have been associated with attempts to return to what I perceived as normal activity levels, then during relapses being forced to disentangle myself from additional commitments I had taken on. Though it is not possible to be certain of the direction of causality, the biggest lesson I failed to learn early enough was to ensure my commitments were well within my energy limits and were such that they could be rapidly withdrawn from with any relapse.
 
Peter Trewhitt said:
In the past remissions have been associated with attempts to return to what I perceived as normal activity levels, then during relapses being forced to disentangle myself from additional commitments I had taken on. Though it is not possible to be certain of the direction of causality, the biggest lesson I failed to learn early enough was to ensure my commitments were well within my energy limits and were such that they could be rapidly withdrawn from with any relapse.
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Thanks for this post - this is the truest thing I have read on ME.
 
Peter Trewhitt said:
In the past remissions have been associated with attempts to return to what I perceived as normal activity levels, then during relapses being forced to disentangle myself from additional commitments I had taken on. Though it is not possible to be certain of the direction of causality, the biggest lesson I failed to learn early enough was to ensure my commitments were well within my energy limits and were such that they could be rapidly withdrawn from with any relapse.
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Agreed, and very relevant for me.
 
Suffolkres said:
(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)
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These sound a bit like shipping forecasts........!
 
This is a useful thread. I always wonder if everyone always ends up severe after a given amount of time. This is important to know for future planning efforts.

Progressive MECFS for 7 years.

Year 0-3 mild. Working
Year 4-5 mild/moderate.
Year 6-7 moderate. Not housebound. Not bedbound, but spending more time horizontal. Not so many physical limitations as others, but cognitive issues are significantly worse....activities like writing things that used to take me minutes, now take forever.

No natural remissions. Only brief remissions from valtrex and then more recently from Abilify--both of which worked until they didn't.
 
Only eight months, which I'd class as mild/moderate - outrageous evasion of all domestic responsibilities leaves me able to work close to full time from home, but walking anything more than 150 yards or so is impossible.

Not sure if such a short duration is useful for your analysis, or an annoying outlier?
 
Shadrach Loom said:
Only eight months, which I'd class as mild/moderate - outrageous evasion of all domestic responsibilities leaves me able to work close to full time from home, but walking anything more than 150 yards or so is impossible.

Not sure if such a short duration is useful for your analysis, or an annoying outlier?
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As can be seen from this poll, Poll - how long have you or the person you care for had ME?, the vast majority of our members tend to the longer duration - someone like yourself arguably can give us a valuable insight into what it is like at the start, I'm sure I'm not the only one whose memory is best described as iffy.
 
MECFS for around 20 years depending on where I started as it was slow and gradual.
2001 started I guess, as I was going through the menopause - continual problems with 'viruses' and feeling unwell for a week at a time. Mild.
2005 Lichen Planus began - a 2nd autoimmune disorder after hypothyroidism began in early 90s. Fatigue set in, in addition to the continual 'viruses' - as I thought they were then. Problems with walking and energy loss set in - still mild but more restricted.
2007 Diagnosed with MECFS
2009 Whooping cough, plus a series of eye ops began. Set back with the W.Cough, and some of the eye ops, some not so much.
Some mini relapses over the years meaning I had to pace better and cut back on things. I was even in a dance/theatre group on and off for years - though paced my activities in it and left several times and came back in when I had recovered a bit. Finally left in 2018 as it took me too long to recover from rehearsals. ME still mild and changed to doing a more sedentary kind of voluntary work.
2020 March - husband died - following this I had to push myself to do more in the house/garden as no one else to do it. Dec - had mild Covid just before Christmas.
2021 Had some Long Covid symptoms after Covid and took a long time to recover. A difficult year and really not coping as well as I did with MECFS pre-Covid. Even struggling with the voluntary work but have continued with it, for my mental health's sake, as am alone a lot now.
Also feeling that last booster knocked me back further, plus physical issues of Plantar Fasciitis and 3 falls during the year, with the last one still affecting me. My balance is poor now - partly due to hypermobility in my ankles and knees and partly ageing of those areas, so my stability has gone. It's getting hard to know what is ageing and what is MECFS.
2022 - I will be 70 this year. I am trying now to move house from a house on top of a hill with no transport and the garden on a hill, and no relatives nearby, to a retirement flat with shared garden, near to my son, many miles away in a new place. Moving and all involved is tough and taking yet more energy that I don't have, but eventually I hope it will be worth it to support myself for my last phase of life. Going to a flat place with help near at hand, and hoping to pace better than I do now!

I cannot walk any distances in the way I did at the start of ME/CFS - or indeed dance, and for many years, though I guess I still think of myself as mildly affected, but I do have to take care as I have been in danger of relapsing a few weeks back when I pushed myself too much. I feel that last year has been a watershed in the wrong way.

I have tried many things over the years to either 'cure' or improve symptoms. In some ways I have succeeded with this, but I am left with the basis of MECFS with lack of stamina and PEM if I push too hard. The various symptoms I have had are better on the whole, especially the digestive ones which plagued me for years.

But only last week I had a new symptom! Very sudden vertigo followed by migraine headache that lasted several days - believed to be vestibular migraine - never had this before, only migraine aura without headache which I had successfully reduced. I guess I have learned to manage my restricted life better too.
 
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Jaybee00 said:
Progressive MECFS for 7 years.

Year 0-3 mild. Working
Year 4-5 mild/moderate.
Year 6-7 moderate. Not housebound. Not bedbound, but spending more time horizontal. Not so many physical limitations as others, but cognitive issues are significantly worse....activities like writing things that used to take me minutes, now take forever.
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@Jaybee00 I was the same as this in my first 6 years. I didn't know I had ME and so was still trying to keep a full time job down but began to spiral downwards fast in the 5th and 6th year toward very severe ME with a very bad flu onset.

Have you incorporated a resting routine at this point to offset any further deterioration? It would be wise if you haven't already. I wish I had known back in my early years what I know now. My ME has shown to improve levels with a resting routine but it is a very slow improvement taking many many years, but an absolute must for me to at least be more comfortable and able to do more than the severer levels. Also, severe and very severe ME are levels that are difficult to get through in every way, so try to avoid them as best you can. :hug:
 
I've been in mild/moderate since my 20's so I don't know, if in my case, it is getting older that makes it feel like it may have gotten worse, when it's just being older with the same severity. Also I've had surgeries in '16, '17, and '19, and so I don't know if that added in makes it feel like it got worse when it's just the same. So, I really don't know. I do know that I certainly can't do the same things I used to when I was in my 20's, that's for certain...but is it aging with the ME/CFS, or is it just simply getting older? I really cannot say for certain with anything regarding this in my case.
 
Thanks, @MEMarge

It's been a shocking descent. I didn't get diagnosed until right before the rapid deterioration, and thought that I was just sluggish because of the pandemic.

I write this from hospital, where I've been for over a month, where they don't know what to do with me, where I remain while social workers try to figure out a care solution for me outside of here.

Pretty bitter about the "tend to get better in the first two years" figure that gets trotted out.
 
horton6 said:
Thanks, @MEMarge

It's been a shocking descent. I didn't get diagnosed until right before the rapid deterioration, and thought that I was just sluggish because of the pandemic.

I write this from hospital, where I've been for over a month, where they don't know what to do with me, where I remain while social workers try to figure out a care solution for me outside of here.

Pretty bitter about the "tend to get better in the first two years" figure that gets trotted out.
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Best wishes to you.
 
Braganca said:
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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Have I ever read correctly that it was 2 day CPET preceding that last deterioration to severe?
 
bobbler said:
Have I ever read correctly that it was 2 day CPET preceding that last deterioration to severe?
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I am really wary of CPET becoming a standard for testing patients for this very reason. PEM is not benign it can cause permanent worsening and that worsening can result in our death. CPET is not ethical even if it is an objective measure in a field desperately looking for one to use on trial outset and exit its far too dangerous for anything other than the study of PEM itself. Even then I think we might look back on those studies and the harm they did differently in a few years.
 
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