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POLL: In the first 6 to 8 years of your ME/CFS, did you get slowly worse, better or remain stable?

Discussion in 'General ME/CFS Discussion' started by Hip, Feb 9, 2018.


How did your ME/CFS progress over the first 6 to 8 years?

  1. I SLOWLY GOT WORSE, and my ME/CFS started with mononucleosis

  2. I SLOWLY GOT WORSE, and my ME/CFS did not start with mononucleosis

  3. I SLOWLY GOT BETTER, and my ME/CFS started with mononucleosis

  4. I SLOWLY GOT BETTER, and my ME/CFS did not start with mononucleosis

  5. I REMAINED STABLE, and my ME/CFS started with mononucleosis

  6. I REMAINED STABLE, and my ME/CFS did not start with mononucleosis

  1. sb4

    sb4 Senior Member

    United Kingdom
    Mine, I think started with tonsilitis. Should I put non mono even though it could be? I have steadily gotten worse.
  2. unto

    unto Senior Member

    Hi Neunistiva,
    I understood, thanks.......;
    the one that causes the small fever 37.2 (but surely in other sick higher fevers) I think it is a viral infection
    or unknown retroviral or as Hip claims a non-cytolytic enterovirus ....
    that remains latent until the cold or other virus or other stressors reactivate it.

    Doctors are wrong sometimes .... when they can not explain particular cases, they tend
    to widen the gap of reference values as in the last decades of the last century in the lymphocyte typology and in your case with the small fever ..... to reassure the patient and have less problems.
    I remember that at the beginning of the illness (1988) I had very low CD4 (half of normal) and low NK, then after 10 years they came back to normal;
    then they told me that even if they did not have any pathology, those tests did not go well, 10 years later they told me that even if I continued to have those low values they were considered normal.

    I think that the causes of this change were above all the values of patients with ME "considered wrong as normal".
  3. valentinelynx

    valentinelynx Senior Member

    Hmm. I remained stable until I overdid it in medical school (at year 3 1/2). Remained stably worse until I suddenly got better a year and a half later. Not slowly, suddenly, much in the way I got ill: like a switch was flipped. I woke one day, sat up and thought, "Wow, it was easy to sit up!" This 80% recovery allowed me to finish internship and residency without any breaks (but I couldn't do anything outside of work). Then, I gradually got worse again starting about 10 years after my recovery, until now I'm as bad or worse than I was at the beginning.

    So I could not complete your poll because it does not have a category for "suddenly got better." My illness did not begin with mono. More likely it was tick borne disease.
    percyval577, sb4 and Mel9 like this.
  4. Philipp


    Don't we have the potential for a large selection bias here because anyone who has been ill for long enough and is browsing this forum pretty much by definition will not be one of the lucky ones who recovered enough to return to work (apart from the odd straggler)?
    Hip, Starsister, Mel9 and 1 other person like this.
  5. TreePerson

    TreePerson Senior Member

    I improved slightly over 8 years but spent at least 2 years getting worse at the start. Improvement continued very slightly for another 10 years. Now deteriorating sharply for 7yrs. No mono.
    Starsister and sb4 like this.
  6. Eve18


    For first 6 years my CFS was mild with ups and downs, but stable. After that is getting worse. Right now it's severe.
    Starsister and Hip like this.
  7. Starsister

    Starsister Senior Member

    I used to work as a reasearch assistant doing research design and agree there is sample bias, but one kind of bias or another is unavoidable in the most stringent research. The most we can do is be aware of each studies limitations and take it into consideration when applying the results. These kinds of polls aren't scientific by any means, but I find it interesting to see others responses and compare. I was surprised so few of us, even on just this forum, do not identify as having history of mono. I think the idea of subsets of precursors to CFS or whatever we call it, has merit, but I was expecting to see us a larger percentage.
    Philipp, Hip and Eve18 like this.
  8. notmyself

    notmyself Senior Member

    oral temperature or rectal are the most accurate..if you have 37.2 taken orally or rectal that's not a low grade fever at all
  9. Hip

    Hip Senior Member

    Yes, that is an issue with the poll.

    I suspect that in this forum you will tend to get mostly the moderate to severe group of ME/CFS patients, with the mild patients under-represented, because the mild group will be mostly be back to work, and probably come home too exhausted to want to take part in forum activity. And those in remission will barely be here at all, except perhaps briefly to post their story of how they got better.

    However, if there were some tendency for post-mono ME/CFS patients to improve over the first say 10 years of there illness, this poll might still pick up such a trend, because improving does not necessarily mean going into remission or becoming mild; it may also mean severe patients improving such that they become moderate, and moderate patients will likely still be reading this forum.
    Last edited: Feb 20, 2018
    percyval577 and Philipp like this.
  10. NelliePledge

    NelliePledge plodder

    I have gradual onset a few possible contributors but not one severe illness that I didn’t recover from. I was diagnosed 2 1/2 years ago but recently saw a specialist who says I’ve had ME much longer than that 10 years or more. So I’ve been living with mild ME undiagnosed for 8 years and doing everything to push through symptoms......
    Hip likes this.
  11. Wishful

    Wishful Senior Member

    People vary in terms of their 'normal' temperature. When I was having 'feeling normal' periods, my oral temperature was almost always 36.65 (halfway between tenths marks). When the symptoms flared up, it was typically a few tenths, and up to a full degree when I felt extremely strong symptoms. While 37.0 might be the average 'normal' temperature, it's .35C above _my_ normal temperature, so I consider it elevated. Whether it's technically a 'fever' is a matter of definition.

    I'm more surprised when I find my oral temperature to be 36.4 or lower, even though I've avoided cold drinks and breathing through my mouth. I think I measured 36.0 on one occasion, but didn't feel anything unusual.

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