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Are there citations re: recovery being rare after three years?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Gingergrrl, Sep 27, 2015.

  1. Gingergrrl

    Gingergrrl Senior Member

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    I have read in many threads on PR that recovery from ME/CFS after three years of being ill is very rare. I was discussing this by PM with @alex3619 and it is a very interesting topic to me as I am approaching the three year mark in January.

    I was wondering if anyone has any articles or citations to back up this statement? I have no agenda and not saying it is or is not true- it is pure curiosity and knowledge of wanting to know where the belief came from or if it is one of those folklore type statements that gets passed around the internet? Am not sure if a specific doctor or researcher found this to be true in a study or how it originated?

    Thanks in advance for any info or citations!
     
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  2. alkt

    alkt Senior Member

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    there is a link in your previous post end me marketing/ big data Were the fundraisers daughter recovered after more than five years .hopefully she will continue to manage her condition without relapsing.
     
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  3. Gingergrrl

    Gingergrrl Senior Member

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    @alkt This is true and I do hear of recovery stories after three years but they seem to be extremely rare. I guess I was wondering where the original citation or statistic came from to try to figure out if those who recover after three years are outliers or if they are still within the normal chances of recovery?
     
  4. Sushi

    Sushi Senior Member Albuquerque

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    What I remember reading on the internet is that 1) if you are young, and 2) if you begin appropriate treatment quickly, your chances of recovery/remission are much greater.

    All I remember regarding "3 years" is that this is the average time that Lipkin et al found for cytokine levels changing.
     
  5. Kati

    Kati Patient in training

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    I think chances of recovery at any time will be higher once we have a better understanding of the pathology and possible treatments.

    The chances of recovery in my opinion vary from the experience of the treating physicians. Dr David Bell returned to his initial cohort of ME patients, mostly high school students at the time (20+ years ago). ge found out that even those who counted themselves recovered were in fact using pacing in order to make it work in their lives therefore the recovery rate depends on how you define it. But he considered these folks still sick with it.

    Of course, the Pace trial is a blatant culprit in saying that you can be cured from ME throguh CBT and GEt, that their trial showed that. But that's a whole different problem on it own, since they lowered the recovery bar so low.
     
    Last edited: Sep 27, 2015
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  6. Forbin

    Forbin Senior Member

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    It's been a while since I read it, but I recall that Dr. Bell said there was a decline in recovery rates after five years in his book, "The Doctors Guide to Chronic Fatigue Syndrome." I think the original edition is from 1994, so there really should be more recent data on this.

    The oft repeated three year mark, though, obviously makes me wonder about the third year change from chronic immune activation to chronic immune "depression" seen in the Columbia study.

    Perhaps some people "recover" when the immune activation burns out, but, for some reason, they don't then fall into immune "depression."

    Along these lines, I think it would be interesting to ask patients whether they notice any significant change in their symptoms at around three years, even if that change is not an overall improvement.

    .[​IMG]
     
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  7. alex3619

    alex3619 Senior Member

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    @Gingergrrl and I got to discussing this. I recall the early literature, mostly comments from treating doctors, talking about five years. However the biggest recovery is in year one, and its very very low by year four. The first three years seem to account for most recovery stories. After five years though the chance of spontaneous recovery is so low its remarkable when it does happen. My guess, and there is nothing solid to back this up, is that many who recover later on were misdiagnosed.

    However there is no good epidemiological research on this. It just does not exist. So we are relying on expert testimony. We cannot be sure this information is correct.

    I added the cautionary tale from Dr Bell when he went back to ten "recovered" patients and found they were all still sick, its just that the symptom impact had become subclinical.
     
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  8. Gingergrrl

    Gingergrrl Senior Member

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    @Kati I totally agree and I am hoping once this happens, recovery can be possible at any year of the illness.

    @Forbin, I have not read that book but it is interesting that he is putting five years as the cut-off versus three.

    The three year mark is what I kept reading on PR and other internet sites and I read it long before the Columbia study came out (I just did not know where it came from!)

    I wondered that, too, except I did not know how to phrase the idea like you did! My immune system is over-reactive (MCAS, hashimoto's, haven't had a cold/flu in three years, etc) so I wonder if I am in that group?

    This is what Alex and I were talking about b/c he wrote it in another thread (I do not recall which one now!) and it reminded me how frequently I hear this statistic and wondered where it came from.

    That's what I wondered and a doctor I saw also quoted me the three year recovery mark but I do not know what he based it on?
     
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  9. Kati

    Kati Patient in training

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    My opinion is that if after a year you haven't recovered from EVB or whatever viral infection you had that triggered the illness, chances are you will have it for the long term.

    People who get diagnosed with lupus, rheumatoid arthritis and MS get the diagnosis and for the most part, it does not get revoked. Some may have remissions. And others not quite. Some have it quite bad and others it is a mere interruption of their lifestyle.

    i am at 7 years now. My sickversary is in 1 month. My doctor (GP) told me I'd get better over time. But what does she know? i lived and still live to this day with the hope of a breakthrough, the hope for treatments that work, and for the recognition that this illness deserves in the medical and scientific world. I think it is very possible we find answers in the next 5 years. Good grants have been awarded and most excellent teams are hard at work in finding solutions.

    The 3years mark most likely refers to the finding from the Lipkin team. But 3years from their paper, that's an average. It means what happens immunologically early on in the disease, and after a while. What does it say about the cohort? Some patients in the cohort are moderate, some are severe.

    In the Norwegian Rituximal trial, some of the responders were long time patients. What does it mean? It means if the treatment is appropriate and well targeted, you and I and everyone could get better. It doesn't mean Rituximab or any therapy works for everyone. i know too well. This is also true for RA, lupus and MS.

    Over the 7 years I have learnt to enjoy every day as best as I can. It may sound cliche and easy to say, but it is what I do.
     
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  10. Sushi

    Sushi Senior Member Albuquerque

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    I believe it was certain cytokines that were "depressed." Looking at the ones they reported on and matching my results on the cytokines I have had tested, mine were also "depressed," yet the Th 2 aspect of my immune system seems to be overactive and I also have not had a cold or flu for many years. So, Gingergrrl, I don't think the overactivity of your immune system necessarily correlates with the level of the cytokines they tested.
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    Thanks @Sushi and I have never had my cytokines tested that I know of. The "three year" mark that I kept reading about pre-dated that study (although the connection is interesting!) It sounds like from this thread that the three year mark that I read about is random and no real citations to back it up. Although if anyone finds one, I am still very curious to read it!

    Thanks again!
     
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  12. Forbin

    Forbin Senior Member

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    Yeah, I began noticing references to recovery happening in the first three years long before the Lipkin study came out, too, and I'm not sure exactly where it comes from.

    I think when people speak of "spontaneous recovery" they are generally referring to a fairly rapid return to normal health (although I'm not speaking of "miraculous recovery" where people assert they were more-or-less "cured" overnight).

    The concept pf "spontaneous recovery" may obscure the notion of "slow recovery," where some people experience gradual improvement over years or decades. This is sometimes written off as "adaptation," but I don't think that is always the case.
     
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  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I feel that im changing from the chronic activation to depression. My lymphocyte T cell testing and immunoglobulin testing have always been high and felt i was more the tired wired type.

    but this year things seemed to have changed especially post shingles. My immune testing done above are now heading south with these results looking low.

    I think the longer we are ill the chances are that we develop a type of immune exhaustion .
    Has anyone else noticed anything similar woth immune tests?
     
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  14. justy

    justy Donate Advocate Demonstrate

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    From the way I see it it is important to distinguish between 'spontaneous recovery' and recovery from interventions. I think the one year/three year thing is to do with spontaneous recovery, in other words the person did not do anything specific beyond perhaps resting and diet to get better. After three/five years the chances of this happening are rare, but with correct testing and treatment I think the possibility of recovery/remission becomes more possible.

    I had a 'spontaneous' remission after three years of being ill, back to around near normal functioning (I could do ALMOST everything, but had poor stamina, lots of recurrent infections, and a feeling of malaise quicker than other people when exercising, I couldn't work and look after the kids, my ability to withstand stress was lowered), but then 10 years after that had a severe relapse into a worse M.E state after measles and pneumonia. I have now been in this severe illness state for 7 years.

    So i'm not sure recovery with no chance of a relapse is really possible at all. I have met others who also had very long remissisons to normal or near normal like me and who subsequently became very ill again. Myself and all the others I have spoken to became MORE ill the second time than the first and none of them then recovered again (although we remain hopeful)
     
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  15. Sidereal

    Sidereal Senior Member

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    I'm not aware of any studies looking at this. I think the three-year belief comes from clinical observations by doctors who treat us and anecdotal evidence in the patient community.

    That has certainly been my experience too.

    I had mild ME with constant infections, mild dysautonomia, poor stamina and stress intolerance for about 10 years before the first serious relapse happened. In hindsight, I had mild PEM during all those years but I had no idea what it was, I just knew I didn't recover from exertion the way others did, and in fact I always felt worse for three days AFTER the exertion than on the day itself.

    The first major relapse involved sudden development of POTS, subjective perception of constant hypoglycaemia and a worsening of existing symptoms which were subclinical prior to that. The relapse lasted about three years during which I was moderately affected. Sure enough, I "recovered" without any treatment whatsoever, just resting and staying mostly housebound. Around the time I "recovered" from this relapse I developed four chest infections in one winter (2006-2007) and took lots of antibiotics. That was the last time I had a real cold/flu.

    For the following six years I was back to near-normal functional capacity in the sense that I could work etc. but I was still sick with poor stamina and tolerance of stress, as well as mild dysautonomia and lots of fibromyalgia pain (which responded well to exercise). I didn't have any noticeable PEM but my capacity to exercise was still greatly diminished compared to other people. I also had a peculiar inability to get normal illnesses when everyone else around me was sick. I would get a sudden feeling of severe illness every so often which would last a few hours, maybe half a day or a day, and I would think "oh, I'm coming down with something" but it never progressed to anything real. The only infections I continued to get during this period 24-48 hour GI viruses.

    Three years ago almost exactly to the day I relapsed in a massive way with POTS, PEM made a comeback, and I developed host of new terrifying symptoms. In the year leading up to this relapse I had been eating a very low carb diet (big mistake), exercising too much (for me; normal people would have found my exercise regime laughable), and was having an unusual amount of stress and overexertion at work. I also got floxed with Cipro around that time for a supposed UTI which was actually IC. Anyway, like a FOOL I continued to push for the first six months of this relapse and was still going to the office a couple of days a week. Any attempts at exercise made me dramatically worse instead of better. My condition then took another turn for the worse in the spring of 2013 when I got an apparent enteroviral infection and I became instantly bedridden with another host of new very severe symptoms including severe generalised pain, mast cell activation syndrome, diabetes insipidus, episodes of massive hypertension superimposed on a baseline of very low BP and pulse pressure, POTS so severe even sitting was impossible for longer than 5 minutes, muscle fasciculations 24/7, frequent shingles outbreaks etc.

    Anyway, I'm now at the three-year mark since the start of my last relapse in Aug/Sept 2012 and I get no impression whatsoever that there has been any tendency toward a spontaneous remission unlike during my first relapse 13 years ago. This time round, I get a sense that no meaningful recovery is possible (unless new treatments are developed targeting the underlying pathophysiology), and every bit of improvement I've made since the low ebb in 2012-2013 has been hard-earned via judicious use of various prebiotic interventions and ALA.

    I personally don't believe full recovery from this illness (ME) is possible. I certainly think that full recovery is possible from garden-variety PVFS but those recoveries usually happen within 6-12 months of the triggering infection. I have spoken to a few people who thought they had recovered from "CFS". Objectively they did not seem recovered to me but had managed to convince themselves that a somewhat reduced functional capacity combined with avoidance behaviours (of triggers like overexertion, food intolerances, stress etc.) constituted recovery.
     
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  16. justy

    justy Donate Advocate Demonstrate

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    @Sidereal - your experience is so similar to mine, a few details different, but you could have been writing my story, not yours.

    I am always struck by the similarities with MS - we have different 'types' eg Relapsing remitting, progressive and primary progressive, and like with MS some people stick with one type, others cycle from Relapsing remitting on to progressive (this is my experience so far)
     
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  17. Sidereal

    Sidereal Senior Member

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    Yeah @justy, same here. Sometimes I read your posts and I think "I could have written that".
     
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  18. Chrisb

    Chrisb Senior Member

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    I wonder whether the three years dates back to clinical experience of glandular fever. I was told by a consultant physician in early 1981 that most cases of ongoing glandular fever usually remitted within three years. He did not say what the outcome was for those cases that did not remit. It may be that this clinical observation was just carried over into the field of ME.
     
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