Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
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Estimate of % of patients who achieve long remission?

Discussion in 'General Treatment' started by SOC, Jan 28, 2013.

  1. SOC

    SOC

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    I need an idea of what percentage of patients achieve a long remission, something on the order of 5+ years. Does anyone have that data? There's the guy up at Loyola or somewhere in Chicagolandish who did that kind of research, but my brain has failed me in coming up with his name right when I really need it. :rolleyes: I hate cognitive dysfunction.
     
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  2. Sparrow

    Sparrow Senior Member

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    I don't think I've come across the reference you're talking about there, but I know I've seen some graphs on this from David Bell's stuff (crash, remission, then slow decline into another crash), mentioning that it was a common pattern in his experience. I can't recall the specific source, though, and obviously it probably only relates to the patients he's seen rather than the patient population as a whole.

    I would be interested in knowing the numbers if you do manage to find them and feel up to posting here.
     
  3. caledonia

    caledonia

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    I've heard it's something like 5%. You might be thinking of Leonard Jason as the researcher. He's done a lot of great statistic/prevalence type research for us.
     
  4. Sparrow

    Sparrow Senior Member

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    Do you know if that's for a full remission (totally healthy) or just for significant enough improvement to be able to live a mostly normal life? I had a stretch where I was able to do aerobic exercise, etc. but was not "well."
     
  5. peggy-sue

    peggy-sue

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    Does anybody know of anybody (with ME) who has had anything approaching a full remission?
    I certainly don't.

    The only folk I know who are better, are folk who have eventually been found to have something else which can be treated - eg, what they needed was a pacemaker, because they had a heart condition.
     
  6. Jenny

    Jenny Senior Member

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    Yep - I did. I was 95% well for about 12 years.
     
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  7. peggy-sue

    peggy-sue

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    That must have been a pretty good time, Jenny. :love:
    I'm sorry to hear it wasn't permanent.:hug:

    Do you think you will manage to get it back again?
    (I hope so!)
     
  8. Jenny

    Jenny Senior Member

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    I really don't know peggy-sue. I got ill again in 2006 and have been a quite a lot worse than I was in the 1980s (though even then I was mostly bedridden for several years), with more neurological symptoms now. And of course I'm a lot older now!

    I keep reminding myself that I can improve, and that any damage isn't likely to be permanent.
     
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  9. peggy-sue

    peggy-sue

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    Quote;
    "I keep reminding myself that I can improve, and that any damage isn't likely to be permanent"

    :) A very good philosophy to have.... "It is better to travel in hope, than it is to arrive."
     
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  10. Hope123

    Hope123 Senior Member

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    There's this paper which is a good review of the papers on prognosis (an average 5% recover full function). However, the caveat is there really aren't many good studies on prognosis -- the problems is some only follow patients for a few years, others are cross-sectional (meaning they didn't follow an individual over time), others use non-objective measures (e.g. how do you feel? vs. asking who returned to their full-time job), etc. David Bell's is the closest we have to a long-term study (25 years) and he found that a fair percent of people were still symptomatic although if you asked them at face-value how they felt, some said they were "well." Bell concluded some were in denial to some extent about their symptoms and just learned how to cope with them.

    http://occmed.oxfordjournals.org/content/55/1/20.full.pdf
     
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I had a pretty good "remission"--went from couch bound to able to work full time with an overnight "on-call" (meaning up most of the night) in a hospital once a week. It probably wasn't a full remission, but I could live and work normally--lasted about 9 years.

    But, yes, it does give me hope that whatever damage we have will eventually be reversible.

    Sushi
     
  12. SOC

    SOC

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    Thanks, gang!

    Yes, it was Lenny Jason I was thinking of. Blast the whole word-losing cognitive thing! It's so frustrating to know exactly what (or who) I mean and not be able to pull up the word (or name).

    I was thinking full remissions (I'll take 95% functionality at "full" at this point) were in the 2-5% range, which sounds consistent with Jason's and Bell's reporting.

    I'm trying to impress on daughter and her bf how very lucky she is to be in remission so that they will do what they need to do to keep her there.

    For the record, I consider my daughter to be in remission because she can function normally. She still takes an antiviral to keep viruses suppressed, but has no known active viruses. She has to manage her OI-related stuff -- low blood volume and tachycardia -- but they don't affect her functioning. We assume she needs to eat and sleep well to stay healthy, too -- unlike most college students. She has not had PEM in 2 years or more. However, she has not tried to climb any mountains or run any marathons. ;) We do not consider her "cured" and are well aware that a relapse is possible.

    My uncle gives every appearance of being cured, that is, he has no symptoms and is taking no treatments. He was never extremely ill -- maybe a 7/10 -- and was on strong antivirals for a looooooong time. Still, I'm more inclined to think of it as a solid remission than a cure.

    Hope123 Thanks for the link it was very helpful. On a side note, I had to raise my researcher eyebrows at this result:
    Isn't it equally likely that those who didn't attribute the illness to a physical cause didn't actually have a physical cause and were therefore more likely to recover than those who knew their illness was physical? So the association with good outcome could just as likely be the fact that they weren't ill as it is the attribution. Occam's Razor would claim the fact as the simpler, more direct, and therefore more likely answer. Damned psychologists and their research biases. Honestly, I'd have flunked a student of mine who came up with 1) such a biased questionnaire, and 2) such a biased result.
     
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  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    anyone know more about the original 12 in montoya's valcyte study who were said to have had remissions/cures?? Interesting to see if they maintained their results???
     
  14. justy

    justy Senior Member

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    I've also had a long remission (approx 10 years) to about 85% function. I could exercise and run around after children, but i was still not fully fully well - i had an inability to gain fitness and stamina past a certain point, rpoblems with temperature control, periods of exhaustion etc. I never have been able to work full time and any increase in stress would lead to feeling worse (but no real PEM in all that time)

    It was taking on a LOT of commitments, alongside looking after 4 children, while my husband worked away from home and then catching measles that did for me. I am now naturally progressing back the way i did nefore, to better health - but i am much sicker this second time than i was the first.

    After my first 'bout' of illness i would have told you i was completely 'cured' but i now see that that was not the case - much like Bell's patients quite optimistic. I was devastated to see all the old symptoms returning, and this time to a much greater severity - and for longer.

    I think for any of us who feel they are recovered we still need to be more careful than others not to take on too much. I thought i was bomb proof and took on way too much even for a healthy person and then my immune systme crashed and took me with it. So i think a normal life is possible, but we cant go around acting like we can do everything at once - its way too much stress on the system.
     
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  15. SOC

    SOC

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    justy, that's just the situation I'm trying to avoid with my daughter. Feeling "normal" is giving her a tendency to be careless about taking care of herself. Do you mind if I use your story as a cautionary tale for my daughter?
     
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  16. Sparrow

    Sparrow Senior Member

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    SOC - At least hopefully your daughter will be informed enough to notice warning signs if they become significant. That's a huge advantage. Of course, she is also young and therefore indestructible, which can be tough to get around.

    My original crash was at 20 years old. I had recovery, then crash, then recovery, then crash again, then a long period where I was living a normal life but my functioning was gradually and subtly declining. But I did recover enough to live "normally" (full time school, work, parties, light exercise, marriage, etc.) for many years. I was able to work until about 12 years following that first virus and crash, though eventually it became EXCEPTIONALLY difficult to do so, and at that point I'd cut everything else out of my life to do it (chores, errands, hygiene, etc.). I didn't realize at the time how abnormally ill I still was, because I'd been that way my whole adult life and I had never received an accurate diagnosis the first time around. I thought I was mostly okay.

    Looking back on it, and now having some idea of what healthy people are capable of, I can see that I was still really sick through almost all of those years when compared with a "normal" person. But I still consider it a partial remission, since I was able to do normal things with my life and the PEM wasn't as obvious (I just thought I got sick a lot). And for a while, I really did feel like a healthy person pretty much. I think. Kind of. ...Okay, I have no idea what a healthy person feels like. ;)

    But I think having this pattern with the illness makes me more skeptical of treatments and the "recoveries" they trigger. I'm never sure whether the gains are really as permanent as they make them out to be. I'm pretty certain I'm a real ME patient, and I know that I thought I was recovered. I've been looked over by some very knowledgeable doctors who support the ME diagnosis very confidently, and I've since gotten severe enough that it makes the symptoms very easy to identify. I've got all the hallmarks in spades.
     
  17. justy

    justy Senior Member

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    No, not at all. She needs to know that it can come back - and in most cases tends to come back worse and take longer to recover from.

    On the other hand a near as normal as you can get life is possible. It is possible to raise a family, to exercise, to hike for days, to sleep out under the starts, to stay up drinking and dancing - just not all of them all of the time!
     
  18. justy

    justy Senior Member

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    What Sparrow said.
     
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  19. Sparrow

    Sparrow Senior Member

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    SOC - Feel free to use me as an example too, if it helps any. I thought I was fine. I was not at all. And now I am bed ridden. The huge evil crash of doom didn't hit me fully until a full 13 years after my first pass with the illness and about nine years after I thought I was "cured." And you better believe if I could go back and approach things differently, I would.

    There were warnings signs for me before becoming bed ridden, but no clear warning signs before I was housebound. It was a slow culmination of the ongoing damage I'd been doing.

    And for the record, it took my less than a year to recover from my first three early crashes. This one is two years in and I'm still lying down full time. I definitely agree with justy that the later crashes can be much, much worse.
     
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  20. justy

    justy Senior Member

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    SOC - my daughter has been ill - she missed out nearly a year of school and was pretty much bedbound - i was very ill myself and having to take her to the loo, bring her food etc. About once a week her boyfriend would take her out for a drive in her car and she would come back exhausted and crash into bed. She never had a diagnosis (she had some atypical M.E symptoms) and has gradually recovered to near normal - she works part time in a bar (she dropped out of college due to illness affecting her grades) she looks goos and has stamina now, and i know she missed out on a lot fo fun teenage years, but she does not listen to me.

    I tell her to presume she has an M.E type illness (still has poor stamina dn gets sore throats and flus etc all the time) but she doesnt really listen. She wants to pretend it has all gone away - she wants to be normal - she wants to party party party. (even though she ends up needing to go home to bed early, or just getting miserable) I have to let her get on with it - bad enough that she may have got this from me, without me constantly moaning at her to be careful.

    If she crashes later on i will (hopefully) be there to help and offer advice. My daughter is lovely, but has never taken my advice so i dont imagine she will start now.

    Take care, Justy.
     

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