Phoenix Rising supports the Millions Missing global day of protest
Phoenix Rising is delighted to support the demands being made in the ME/CFS community’s first-ever global day of protest …
Discuss the article on the Forums.

Slow onset vs. sudden onset ME/CFS - numbers anyone?

Discussion in 'General ME/CFS Discussion' started by Mary, Feb 3, 2017.

  1. Mary

    Mary Senior Member

    Messages:
    2,561
    Likes:
    5,452
    Southern California
    Does anyone know the incidence of sudden onset vs. slow onset ME/CFS? i.e., what percentage are sudden vs. slow onset?

    This may have been covered elsewhere but I can't find it - thanks!
     
    Izola likes this.
  2. sleepingbeautyxxx

    sleepingbeautyxxx

    Messages:
    63
    Likes:
    101
    Germany
    I don't know the percentage, but it seems as if most people with cfs experienced a sudden onset. But I guess it's harder to diagnose someone with a slow onset, so I could image there are a lot of people with a slow onset out there, not yet diagnosed?

    For me it was a pretty slow onset, and it took me a long time to believe it's cfs, bc I always thought that you have to have a sudden onset.

    I'm curious about the percentage too!
     
    Mary likes this.
  3. Mary

    Mary Senior Member

    Messages:
    2,561
    Likes:
    5,452
    Southern California
    I agree, it seem most cases are sudden onset, at least from what I see on this board. You make a very good point - there probably are many people with slow onset who are not diagnosed - but maybe it's not considered ME/CFS until PEM hits? I often wonder if I had had proper care in the early years and knew what to do, if I might have been able to ward off developing full-blown ME/CFS.

    Mine was very slow onset - it took 13 years from when my health first started to decline, before I crashed (PEM) for the first time. Like you, it took me a long time to figure out what was going on. But I have no doubt I have ME/CFS - with PEM, low NK cell count, sleep and immune problems. Though I don't have brain fog or cognitive issues or pain and don't have a clue why not.
     
  4. ash0787

    ash0787 Senior Member

    Messages:
    286
    Likes:
    562
    would be interesting to compare speed of onset with severity of triggering event, following logic- if some are more likely to develop cfs than others even within the patient group, then you would expect to see some people getting it with milder triggers at a younger age, possibly slow onset in that case.
     
    Cohen2, Mary and sleepingbeautyxxx like this.
  5. sleepingbeautyxxx

    sleepingbeautyxxx

    Messages:
    63
    Likes:
    101
    Germany
    I suffer from it 3 years now, and I'm still a mild case, I always wonder if it will get worse... I'm a little bit scared.

    For me, PEM wasn't really a thing at the beginning, but now it's getting worse. Brain fog was one of the first things that hit me, besides being tired all the time. Like you, I didn't experience pain, until I got a flu shot back in November 2016.

    I wish you the best and hope that you never get cognitive issues or pain!
     
    Mary likes this.
  6. sleepingbeautyxxx

    sleepingbeautyxxx

    Messages:
    63
    Likes:
    101
    Germany
    @ash0787 I was 14 when it started (extremely mild symptoms, almost no problems besides being tired) and the cause for me was most likely VZV, since I had shingles.
     
  7. arewenearlythereyet

    arewenearlythereyet Biscuit Antagonist

    Messages:
    1,279
    Likes:
    5,500
    Uk
    Gradual onset for me over about 8 months. A couple of viruses finished me off at the end.
     
    Mary and sleepingbeautyxxx like this.
  8. sleepingbeautyxxx

    sleepingbeautyxxx

    Messages:
    63
    Likes:
    101
    Germany
    "A couple of viruses finished me off at the end."

    @arewenearlythereyet that's the case for me right now
     
    arewenearlythereyet likes this.
  9. arewenearlythereyet

    arewenearlythereyet Biscuit Antagonist

    Messages:
    1,279
    Likes:
    5,500
    Uk
    I had a load of skin infections as well. These were mainly small cuts that got infected on my hands and arms. They took ages to heal about 8-12 weeks. I remember because I work in the food industry I had to wear bright blue plasters. Used to clear out the medicine box at work. Think I had about 15 on at one point. It was almost like my immune system was slowly breaking down and then I got a couple of bouts of noravirus that was going around my sons school and that really then made me deteriorate quite quickly after that. Did you have any other signs of immune dysfunction @sleepingbeautyxxx ?
     
  10. sleepingbeautyxxx

    sleepingbeautyxxx

    Messages:
    63
    Likes:
    101
    Germany
    @arewenearlythereyet I never had infected wounds or norovirus. In early childhood I had the worst immune system ever, I catched everything. But then I was healthy until I got herpes zoster and following cfs.

    About one year after shingles I got kidney infections, blatter infections, a lot of viral infections and colds, I had a problem with candida overgrowth and tonsil infections. I also had - uncomfortable to talk about, but who cares - a wart on my leg before the shingles, but in the following time they spread (very little ones) whenever I tried to treat them. I don't know if it was due to cfs, luckily if have control over that now.
     
  11. Mary

    Mary Senior Member

    Messages:
    2,561
    Likes:
    5,452
    Southern California
    There are things you can do to help keep from getting worse - one of the biggest is not to push yourself, and to rest as much as needed, and then rest a little more. I didn't know any of this and continued to push myself as much as I could, even after I started crashing, sort of like running a car into the ground, which will be much harder to fix than if caught early.

    And I'm sure you know there is groundbreaking research going on which is giving us all hope! :nerd:
     
  12. sleepingbeautyxxx

    sleepingbeautyxxx

    Messages:
    63
    Likes:
    101
    Germany
    @Mary luckily I got help before I was completely sick. :)
    And through PR I learn everyday.

    I hope so too!
     
    arewenearlythereyet and Mary like this.
  13. alex3619

    alex3619 Senior Member

    Messages:
    12,255
    Likes:
    33,619
    Logan, Queensland, Australia
    What about the third choice, staged onset? Staged onset can be sudden or gradual but occurs in steps. Each insult, injury or infection triggers a worsening of symptoms. Quite a few of us report this, but I have no idea what the percentage of patients is. Indeed I think some sudden or gradual onset might be staged onset.

    One of the reasons for this, I think, is that ME does not always appear as even mild ME. You can have very mild ME that is less than sufficient for clinical diagnosis. However each major relapse drives the problem further, until you cross the threshold into diagnosable ME. I also think that partial remissions then severe relapses following remissions might show this pattern.

    Some years back David Bell looked at ten "recovered" patients. Every one had symptoms, they were just able to more or less get on with a normal life.
     
    merylg, lafarfelue, Comet and 11 others like this.
  14. arewenearlythereyet

    arewenearlythereyet Biscuit Antagonist

    Messages:
    1,279
    Likes:
    5,500
    Uk
    This seems likely from my point of view......it points to some kind of tipping point where the balance is immune system resilience vs level of insult which would explain why some people report sudden onset vs others gradual/staged
     
    Mary likes this.
  15. alex3619

    alex3619 Senior Member

    Messages:
    12,255
    Likes:
    33,619
    Logan, Queensland, Australia
    Gradual onset usually means developing over a few days or weeks. Longer than that is not gradual onset. Sudden onset usually, so far as I am aware, means during a single day, and often during a single hour.
     
    sleepingbeautyxxx likes this.
  16. sleepingbeautyxxx

    sleepingbeautyxxx

    Messages:
    63
    Likes:
    101
    Germany
    @alex3619 that's a good point. Then for me it is a staged onset, I never thought about that. But makes sense...
     
  17. lnester7

    lnester7 Seven

    Messages:
    2,271
    Likes:
    3,175
    USA
    I was slow onset on and off. Mine was years by the way. I excercise until year 3 or so. I had a few remissions also.

    First I had fatigue and muscle pain, sleep issues. Random symptom.
    Year 3 joint pain started.
    Year 3 bed ridden. Developed OI. Got OI meds and out of bed in 3 months w meds.
    Year 5 lymph pain and throats pain.
    Year 7 got a remission and crashed
    Very bad till today year 10
     
  18. rosie26

    rosie26 Senior Member

    Messages:
    2,348
    Likes:
    4,825
    I am a staged onset also.

    My staged onsets...
    1. Bacterial infection (was never the same microbiome-wise after it)
    2. Flu (flu-like cold) set off mild ME onset symptoms
    3. Flu ( bone aching) set off severe ME onset.

    Still trying to understand what is happening now - 15 years after the severe onset.
     
    arewenearlythereyet and Mary like this.
  19. purrsian

    purrsian Senior Member

    Messages:
    305
    Likes:
    759
    I think so much literature has focused on it usually being sudden onset, but that there is actually a large proportion of gradual onset (probably more likely staged onset as Alex said). There's a post on here somewhere where people explain their onsets and triggers, and another where people explain how long they've been sick for and most spoke about onsets too. There seemed to be a lot of both types of onsets. That may be skewed compared to the full CFS population though, as people who've had it for so long are likely to hang out on PR or people who've had a confusing staged/gradual onset and difficult diagnosis are possibly more likely to be searching madly online for answers that doctors can't give. Also, the very severe can't come online, so that takes out a segment of our community too.

    Literature also describes us as having a 'relapse-remitting' type illness, but from what I've heard on here, there are a number of people that don't experience that either. They have a progressive type instead. And then some have the up and down nature of relapse-remitting, but couldn't ever say they ever had remission.

    I think that being such a poorly understood illness, it's likely that we could have different subsets of this illness, which could explain why there are so many different onsets, progressions, some spontaneously getting better while others don't. It's currently hard to study due to the exclusion nature of our diagnosis - how can researchers be absolutely sure that all participants have the illness? Once we have a diagnostic test (Griffith University expects to have one in the next 5 years) they will hopefully be able to do better studies in epidemiology and really understand who gets affected and how they are affected.
     
  20. Chris

    Chris Senior Member

    Messages:
    742
    Likes:
    429
    Victoria, BC
    I think I was a staged onset, and I think the main culprit was EMF/RF--not a popular trigger, but Martin Pall has pointed at it, and I think he is right--of course there are other triggers but I think this is an underestimated one. I drove with a friend from Montreal, my home for over 50 years, to Victoria BC in August 2006. I arrived in the best of health (73 years old) with my beautiful kayak, a good bike, my beloved Concept 2 rowing machine, prepared to explore much of BC by bike and kayak (had already done some kayaking there, and now my daughter and the kids were there). Moved into an apt building topped by a forest of cell and other antennae. For the fist months all was well--walked and biked around the town... and then in December an odd pain and high BP triggered by a walk--Emerg, no heart attack, sent home. But felt not quite right, and late January a more intense version hit me, Emerg again-no problem found--but there followed a few ghastly months--no-one could find anything wrong, but I could not do anything, and kept getting hit by high BP spells etc. Somehow regained most of my energy over the summer, well enough to go back to Montreal for Xmas with friends, but came back to find myself wiped out, and have had no "remissions" since, though there have been fluctuations.

    Took me two years to figure out what was happening, rented a Stetzer RF meter, and found sky-high readings in my power outlets--plugged them full of Stetzer filters, and that improved things a bit; a couple of years later moved to another apt, improved a bit, but not much, and now of course the building has WiFi installed--I was not consulted, "smart" meters too--I am lucky enough to live two stories above them. My symptoms are mainly lack of energy, PEM, OI and stuff like that--not much to show on the myalgia, immune or even cognitive (though some there--fatigue hits there too) fronts--Julia Newton has a small paper some years ago proposing that when ME hits the old their chief symptoms are fatigue and OI. Fits me! So as a result I fit into the CCD, but not the Fukuda definition. And I am male, so all in all a bit of an outlier. But there was an interesting recent paper from Norway I think showing the sexual slanting of ME only began around puberty, and ended a while after menopause. Seems ME is a pretty equal employer of the young and the old.
     
    Mary likes this.

See more popular forum discussions.

Share This Page