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Sudden or Gradual Onset?

Discussion in 'General ME/CFS News' started by Sing, Jun 7, 2012.

  1. Sing

    Sing Senior Member

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    Dr. Byron Hyde, a very experienced researcher, sees ME as always being sudden onset and CFS being a catch-all name only, which covers many other possible conditions.He is not the only doctor or researcher who thinks this way, is my impression. Yet, the best definitions we have, the CCC and ICD, still say sudden or gradual onset. Here is a hypothesis I have which might explain at least part of this discrepancy:

    Children who get ME are known to have better recovery, in general, than adults. Some even seem to recover fully. Some claim they have, but on closer examination, according to Dr. David Bell, really have not, but have integrated ways of coping so well--rest, careful diet, etc.--that they seem to be doing better than they are. Nevertheless, young, more resilient bodies do seem more capable of apparent recovery.

    What I wonder is if, for those infants or children who got ME and were probably were never correctly diagnosed, then went on to apparent recoveries, could it not be that later on in life, with further stresses, illnesses, or just normal aging, the original ME then rears its head again? This is what is known to happen with Polio, and ME as at least sometimes the result of those same enteroviruses responsible for Paralytic Polio.

    I think this pattern of apparent recovery then later recurrence might explain some of the gradual onset cases. The body never did heal completely but only mounted a successful defense and many compensations, which, after decades perhaps, have been eroded. I think this is what happened to me. I wanted to present this as a hypothesis which might account for gradual onset.

    And/or if, ME/CFS (using the whole, current designation) turns out to be an autoimmune illness, aren't these known to develop at different rates in different individuals too?
    Sidereal, rosie26, Snowdrop and 5 others like this.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Also i dont think kids would know what normal was if they have been sick most of their childhood. I wonder how many recovered children with me/cfs have gone on to be high level athletes or serious week end warriors, that may tell more of a storie if they recovered or were living in their energy envelope without knowing.

    cheers!
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    This could pretty much explain the course of my illness. I was never really well from adolescence, had periods of disabling sickness in later years but always seemed to mostly recover until a period of many months of totally overdoing tipped me into a disability level.

    Sushi
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  4. jstefl

    jstefl Senior Member

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    If you had asked me several years ago, I would have said that I had sudden onset ME/CFS. I was feeling "normal" up until I caught a cold back in January, 1991. I never recovered from that cold, and went downhill for many years thereafter.

    Now, looking back at my life, I see that I was developing some of the symptoms for many years before the "sudden onset". I have had a continuously sore throat for almost all my life. I started developing shortness of breath and general weakness years before my "sudden onset". I thought I felt "normal", but I really had no way to know how others felt.

    I now believe that my illness took years to develop, and the cold was just the proverbial " straw that broke the camels back".

    John
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  5. justy

    justy Senior Member

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    I think your hypothesis is a good one Sing. It is a way of looking at the gradulal cases that i have often considered myself. Especially in a world where many people take years to get a diagnosis - how would you really know if it had been sudden rather than gradual.

    I had a very similar onset to others described in this thread. Apparently gradual - but actually a series of illnesses that i seemed to recover from, only to be thrown back into ill health later on. Being low in stamina and fitness and energy was something that i believed was just a part of my make up - but really i believe i had M.E all along.

    All the best, Justy.
    merylg and Sing like this.
  6. SOC

    SOC Moderator and Senior Member

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    My daughter and I both had a very sudden (normal to quite sick within a couple of hours) flu-like onset within a week of each other.

    That said, I can see that I may have had symptoms (multiple infections, severe rxns to odors, chronic bronchitis, chronic sore throat) prior to the fateful viral illness that knocked me over into full-blown ME/CFS. My daughter, however, was perfectly healthy prior to the viral illness. She was involved in athletic activities along with being active and involved in life. The only thing she had prior to ME/CFS onset was recurrent ear infections as a small child.

    I wouldn't be at all surprised to find out that in at least some PWME, whatever is causing ME/CFS has been stewing for years waiting for the right virus (or stress) to let it loose to wreak havoc.
    merylg and Sing like this.
  7. floydguy

    floydguy Senior Member

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    I agree it may be difficult to know whether it was sudden or gradual. In HS, I had got an awful case of the chicken pox, then an awful case of hives and then what was believed to be "mono" for 6 months. I seemed to recover and then have a more gradual decline 15+ years later. Was it the same thing or different? Who knows.
    merylg and Sing like this.
  8. Sing

    Sing Senior Member

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    This is so interesting! Thanks, everyone, for telling about your experiences and thoughts about type of onset. I felt sorry about all the suffering conveyed by some of these details.

    It is hard to know what normal is if you haven't been normal. For example, I have trouble with that every time I get asked to rate my general pain on the 1-10 scale. The assumption is that we all know what no pain or feeling fine is. That question always annoys me because I ache all the time and am even aware of it in my sleep. On the other hand, some levels of functioning I have been able to compare with peers. Tolerance for alcohol is an example. But with most of these differences, adjusting and compensating then ensue and, not wishing to feel unhappy, I "forget about" these differences--until some overexertion unquestionably puts me out on the floor. These are a few reasons why it can be difficult to answer, "How long have I had this?" or, "Which particular illness started all this?" or, before it gets so bad, "Am I just temporarily sick (normal bias says, "Yes, just temporary!") or "Is my problem just a weak constitution?" I used to believe that last one for years.
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  9. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    My onset was both fast and slow. The vicious flu that started everything came on quickly, during spring break when I was in college. Over the next 5 months I slowly recovered. I remember writing a friend at the start of the fall semester that I was finally over the flu that had dogged me since spring.

    Around a year later I was having problems again. I tired very easily, then took two nights of sleep to recover. I thought then that it was related to the previous flu. I have experienced a slow downward trend from then on. I think now that I never completely recovered from the initial flu, just 90+ % improvement which felt "well" to me then.
    merylg, Sing and taniaaust1 like this.
  10. taniaaust1

    taniaaust1 Senior Member

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    My onset was both sudden but also gradual.

    Sudden as I kept on being hit with big bouts of like "viral symptoms" which came on suddenly with any severe mental exertion eg exams, assignments (too many late nights due to studying).

    Gradual as I kept on recovering from these before getting sick again... that continued till the illness was a full time one... the physical post excertional trigger didnt happen for me until the illness was a full time one.
    merylg, justy and Sing like this.
  11. Enid

    Enid Senior Member

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    Another case of "sudden" I guess Sing - from good health to a sore throat and flu like symptoms which simply would not go away. I noticed cognitive decline was the first major problem before all the other well known ME symptoms set in badly. Polio (or post polio was a definite consideration in my case though I tend to think the Immune system was rendered inactive allowing expression of latent viruses).

    Very much taken with the Fluge/Mella researches and the "rebooting" of the immune system so to speak.
    merylg and Sing like this.
  12. mellster

    mellster Marco

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    I'd say both as well. I got hit suddenly with an infection from a very healthy state which took 4-6 weeks at minimum to resolve, but then a gradual decline (into the FM/CFS camp, not ME) started from the 80-90% recovery which had to hit a low point until I started taking it seriously. Looking back that infection (assumed to be possibly h1n1 during the swine flu craze) could likely have been mono.
    taniaaust1, merylg and Sing like this.
  13. alex3619

    alex3619 Senior Member

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    There is a third option that is sometimes discussed as well, staged onset. ME may be subclinical, too mild to be a noticable problem. The stages could involve new triggers that cause a gradual or sudden worsening of the mild ME.

    The primary reason for the claim of sudden onset in ME appears to be that it is very clear in epidemics, and epidemics tend to involve sudden onset. However, epidemics of what? Any pathogen that occurs in epidemics might also occur sporadically, including similar but not identical pathogens. So if this is pathogen triggered (autoimmune or not) then you would expect sporadic cases - they would still be ME but much harder to diagnose due to the lack of a validated diagnostic test. In addition this diagnosis problem means, for research purposes, the best people to select for a study are those in epidemic clusters. There is no question about that. However in a clinical setting the verdict is still unknown - everyone is speculating.

    I do not disagree with your proposal though Sing. I think it has merit, and similar discussions have happened before. When I was one year old I apparently had a very severe fever that had my parents very worried. I do not have any more details than that. When I was seven I had measles encephalitis. There are plenty of candidate triggers in my case history.

    Bye, Alex
  14. justy

    justy Senior Member

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    Hi Alex - yes i like the staged onset hypothesis - and think it can fit in with Sings also.

    For me i had an M.E 'like' illness after glabdular fever at 14 - after that kept getting what my saturday employer (pharmicist) called 'glandular flares' - especially during diffucult times like exams etc. I thought that the terrible dragging feeling in my legs and brain was normal after a shopping trip in a mall - i thought everyone felt like that. I shied away from too much physical activity as it left me exhausted. In my late teens thing picked up a bit, even started swimming and cycling a bit. Then i had two children in my early twenties 9in the meantime i contiuned to have severe chest infections and bronchitis 4-6 times a year. After the birth of my second child my health hit a really bad dive and i started to suffer from extreme exhaustion and anxiety and PEM. I eventually recovered from this to be functioning at about 80% by the time i was in my late twenties. Between then and 4 years ago i would say i probably had mild M.E, but was undiagnosed. Always going to the doctor with something wrong - but being dismissed as neurotic etc. Had two more children - couldnt work as well, did bits of voluntary work and some walking and swimming - always trying to get fit, but never getting there!

    Then 4 years ago i caught measles from my un vaccinated children (i had been vaccinated as a child) Then got pneumonia and pleurisy - then had a severe lung infection for a year that wouldnt clear up. Then had an operation on my cervix and fell Headlong into full blown severe M.E. No mistaking what it was this time - and finally a diagnosis - 17 years after i was first ill - but 27 years since the glandular fever and 37 years since the first time i had pneumonia followed by bad health.

    What an exhausting story! I obviously needed to get that off my chest.
    Thanks for listening, Justy.
  15. Valentijn

    Valentijn Activity Level: 3

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    I think I had a milder case of it for a long time. I was at maybe level 7 or 8 for the past 10 years or so, with less intense symptoms and a much higher threshold, but still the basic ME problems - totally exhausted by full time school or work, nothing left for a social life, and consistently getting the "flu" every time I was exercising regularly. And occasionally some OI and/or low blood pressure issues.

    Then a bad virus in January 2011, and a pretty rapid decline to level 2 over a few months.
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  16. Sing

    Sing Senior Member

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    Yikes! These are powerful stories.

    I was extremely sick as a baby with a high fever, "cried all the time and we didn't know what was wrong", said my father. There was a lot of polio going around in my area--it was before the vaccine, and I suspect I had a non-paralytic form of the Coxsackie virus then. After that, picture a very thin toddler with dark circles under her eyes.

    When I got old enough to notice what was going on, I noticed that I was sick more often than my siblings and had less stamina. Other than that--apparently normal. Yet, as a teenager, couldn't stay out late or engage in the intense activity level others could manage. Tried smoking and wasn't healthy enough to do it (!) as my body retailiated with one respiratory infection after the next.

    Fast forward 10 years to the birth of my child: Developed insomnia in response to his normal awakenings and began getting ever more infections. By his 3rd year, I was sick all but 2 weeks out of 10 months (was keeping track then). This bout ended with an emergency hospitalization due to shock, pneumonia, pleurisy and a collapsed lung. After that I got well enough to cope for another 10 years, but decided firmly against any more children because I felt our quality of life, if not my survival, would be at risk. Learned I could not work more than part time either without having successive illnesses again.

    Then mid-40's, peri-menopause, hormone drop? tripped off the next big category of losses in the realms of memory, cognition and energy. That is when I date my onset time officially--when I really dropped off the cliff.

    Isn't it interesting how the body, like the captain of a floundering ship, successively tosses more and more overboard in the attempt to lighten its load and decrease the challenges? We may be dying by degrees but the body is fighting maybe a brilliant defensive campaign.
  17. alex3619

    alex3619 Senior Member

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    Hi Sing, this is of course what Cheney has been saying for a long time. Our capacity is lost in stages as we adapt and preserve what is left. Bye, Alex
  18. meadowlark

    meadowlark Senior Member

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    My onset was slow but hideous. In the summer of 1982 I suddenly began to experience thirty years of daily hemiplegic migraine. (Hemiplegic pain goes down one side of the body, head to toe.) No other ME/CFS symptoms but believe me, the pain was off the charts. In 2000, other symptoms began, and soon I could easily check off most of the Canadian Criteria boxes. In 2001, I was diagnosed at the infectious diseases unit of Toronto's Sunnybrook Hospital, and am now apartment-bound or mostly bedbound, depending on the day.
    Sing likes this.
  19. KiwiOz

    KiwiOz

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    Mine was sudden after an operation. Was totally fine before the op
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  20. Sing

    Sing Senior Member

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    That is interesting, KiwiOz, about the operation as a triggering event. I wonder if it is the anaesthesia's effect on the nervous system or the overal stress to the body? I had a serious decline too after a big operation, a hip replacement. After that my blood pressure became a lot more problematic--hypotension--and this limits my potential activities, other medications I can take and is probably further impairing my brain. Lack of blood supply and oxygen to the brain isn't good! Also my energy took a year or so to improve. Not sure it is fully back to where it was---

    What happened to you and what is your thinking about it?
    KiwiOz likes this.

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