Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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Surprisingly good outcomes for people who get ME/CFS after Mononucleosis (Glandular Fever)

Discussion in 'Phoenix Rising Articles' started by Simon, Jan 20, 2015.

  1. biophile

    biophile Places I'd rather be.

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    Yeah, although it is wise to be very cautious about any definition of recovery, when you look at the earlier ME outbreaks, IIRC a sizable proportion improved or even recovered within months of onset (the definitions of recovery may have not been particularly rigorous or comprehensive though). It's the ones who failed to improve or recover early on which had the most problems later on. Some of the remaining patients improved very slowly over time but many remained severely ill for decades or relapsed frequently. However, I think Jason et al (?) published a very long term followup which found that even those who reported a recovery were still significantly worse off on most measures compared to healthy controls.

    My symptoms started as an adolescent around the same time a sibling began a struggle with suspected glandular fever. Even though I had chronic problems with sore glands and blocked sinuses (on top of a bunch of other symptoms I tried to keep to myself), at the time I didn't really put it together, and the first doctor I reached out to suggested that I probably have "growing pains", then after a naturopath failed to help I was left to think it was psychological, although I always struggled with that conclusion because its explanatory power seemed inadequate compared to symptoms.

    It was distressing but impairments were relatively mild in the early years, but I was open to mind over body ideology, pushing through symptoms, and (multiple failed attempts at) regular exercise. It was trying to live an ordinary life and being subjected to quackery which triggered long term descents into the pit. If I knew back then a fraction of what I knew now and got a proper diagnosis with proper advice, I don't think I would be nearly as chronically affected as I am now decades later. On the other hand part of me always felt down deep that whatever mistakes I made only accelerated the enviable.
     
    Last edited: Jan 22, 2015
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  2. Sidereal

    Sidereal Senior Member

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    This study?

    I think I remember David Bell talking about these kids and remarking that once they lost OI they considered themselves recovered but in actuality they were still sick compared to normal controls, they had just used various strategies to adapt their lifestyles to ongoing symptoms.

    My history is very similar. I never fully drank the psychology koolaid but when I was younger I struggled with many ever-changing symptoms which I kept to myself for as long as I could. I almost never went to the doctor as I was always somewhat doubtful about their organic basis and never did anything to really educate myself properly about the management of this disease because I preferred to pretend that ME/CFS doesn't exist, or if it does, that I didn't have it. I was doing all the wrong things for many years as a result of my ignorance.

    Doing exactly what psychology thinks we should all do, i.e. trying to live a normal life and ignoring/pushing through symptoms is what ultimately led to complete disability. I became bedridden after I stupidly went against my innate skepticism and gut feeling and gave in to the GP's badgering to embark on a diet & gentle informal graded exercise programme of daily walks. Doing that diligently for about 12 months is turned my previously mild ME (working full time with difficulty) into severe and almost completely bedridden.

    As for mononucleosis, I've never had it but when I was a child my brother who was a teenager at the time had a severe version lasting for months and his body temperature forever remained a degree lower than normal although he has so far not developed other ME/CFS symptoms. My own health problems soon followed including the low body temp which developed some years later.
     
    Last edited: Jan 22, 2015
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  3. meme1234

    meme1234

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    I would like to know out of the people who recovered what they did to help their recovery if anything- did they change diet for instance ?as maybe there is a link to why some people get well and others don't ?
     
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  4. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    In medical terminology, acute means of short and sharp course, often severe (but I don't think it has to be severe). It's in contrast to chronic, which is long-term.
     
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  5. Woolie

    Woolie Senior Member

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    This is an interesting thought, @Lynn. Your profile sounds very much like mine: onset at 25 with mono-like illness (not confirmed through blood tests at the time), followed by long mono-like episodes (low grade fever, etc.), but able to return to work at 29. I'm now 50 and having my worst crash in 22 years.

    Obviously, that sort of thing isn't going to show up in the time frame studied here.
     
  6. Woolie

    Woolie Senior Member

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    @Gingergrrl, what I meant was this: what if your prognosis depends not on your age, but on the nature of the event that triggered your onset?

    Now, we know that post-EBV ME is more common in younger than older people. This is because most people - with some exceptions like yourself - have encountered EBV by the time they get to their mid 30s, so ME occurring after this age is only rarely going to involve EBV/mono as the triggering event.

    If post-EBV ME has a better prognosis than other types of onset, then that younger group - which contains more EBV-onset cases - might show better recovery for that reason. Not because they're younger as such, but because more have EBV as their onset.

    I don't know if that's the case at all. But its a possibility. It does seem to me that there are mutliple ME's. Acute onset ones do seem to have a better prognosis than gradual, and I think this is probably because they reflect different disease processes.
     
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  7. Gingergrrl

    Gingergrrl Senior Member

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    @Woolie I guess what I am still trying to clarify (using the theory of the article- which I still have not read!) is, would my case be considered acute? I became very ill immediately after a minor surgery and five days later diagnosed with mono from EBV. I was extremely ill, the sickest of my entire life, from the mono for about 6-8 weeks. But then I fully recovered (or so I thought) until I got another infection about 10 months later which led to tachycardia, dysautonomia, and a gradual decline from Jan 2013 to the present but with the last six months being an extreme worsening of my symptoms. So is this acute or chronic?
     
  8. Snow Leopard

    Snow Leopard Hibernating

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    Neither. It clearly illustrates the problem with dividing between 'acute' and 'gradual' onset, when the real-life demarcation is not so simple.
     
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  9. Woolie

    Woolie Senior Member

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    I don't think this is all that uncommon in "acute onset" cases. There's an acute viral illness that appears to resolve, then later down the line, the person gets what seems to be a relapse. And so on. Maybe others could comment, but I still think this fits the sudden onset profile better than the gradual onset.

    If you can identify a clear turning point in your life when you went from being completely normal to quite messed up, then its sudden onset, even if there are some relapses and remissions along the way.
     
  10. deboruth

    deboruth

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    Simon, there is nothing pleasing about being in part time work in your 30s, as these people seem to be. In your 30s you need to be in full time work to be on a path that will enable you to support yourself and have a retirement. In this case only 27% have full time jobs, which is proper employment. "Part-time" could be five or ten hours a week. Also, being fatigued all the time, even if you are in the lucky 45% with full time work, does not allow for a full life. In fact 100% of these people are not leading the life they could if decent medical research were done and treatment available.
    Home-makers should be taken account of. Those with children and no child-care help should be scored as in full-time work.
     
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  11. Simon

    Simon

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    I would like to know too! But this was not part of the study, I'm afraid.

    I completely agree - the 'pleasing' part was that they used an objective measure (employment) rather than a less-reliable self-report scale as the primary measure:

    Again, I agree. I think the results are better than I've seen for other studies (which is what I meant by 'surprisingly good') but still not impressive. I'd tried to reflect this in the blog:
    * this edit was made early on for the blog but didn't get picked up by the system to change the version on this thread - apologies, this has now been done.


    That's a very good point. I did mention that even a healthy population probably wouldn't be working full-time at this age because of childcare, but the study would have been stronger if the researcher had measured home-making in an equivalent way to employment,
     
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  12. msf

    msf Senior Member

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    It seems odd to me that the authors would go to all the trouble of tracking these patients over a number of years, and yet not try to establish that it was EBV that caused their mono-like symptoms. Perhaps this was because it was (partly) retrospective, and they didn't have access to the patient's initial test results. I agree that most doctors should be trying to confirm EBV in cases of mono, at least in a country like Norway, but in a scientific paper you would hope that there would be some evidence of this. I couldn't even find the part that someone else quoted about it being based on physicians reports, in fact it seemed rather to be based on a retrospective questionnaire, which is hardly enough to define the cohort as 'ME mono.'

    Re: the twin peaks, I think both suppositions (i.e. that is it two diseases, or that it is the same disease) are plausible. But there is a third supposition too: that there are more than two diseases here. These could either contribute to the peak pattern (i.e. the first peak could represent the increased incidence of two (or more) diseases at that age) or they could just contribute to the overall incidence without significantly affecting the peak pattern (this is more likely to happen if there are many diseases).
     
  13. Simon

    Simon

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    Yes, it was because they saw all these patients after they developed cfs and after the initial mono - hence they recorded 'mono' not EBV as the cause. Which seems fair enough - they only claimed what they knew.
     
  14. msf

    msf Senior Member

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    Thanks for finding the quote, but again it's not very reassuring - perhaps we can ask Lansbergen, but what does "the diagnosis of mononucleosis was based on the physician report following the patient to the clinic" mean? It could mean what you assumed it meant, but it could also mean that it was based on the physician's report, following the patient being referred to the clinic. Plus, the diagnosis of mono is hazy one, since there are many mono-like illnesses out there.

    I think we will have to wait for the Jason study into EBV mono in university students to conclude before we can say that what proportion of people with EBV Mono might end up being diagnosed with ME.
     
  15. lansbergen

    lansbergen Senior Member

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    In the species I observed there is only one known herpes virus. That was not found in the population I was watching but it became a problem in some other populations.

     
  16. msf

    msf Senior Member

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    Sorry, I'm not quite sure what you mean, but I mentioned you because I thought there might be a Norwegian version of the paper that might be a little clearer about how the patients were diagnosed with mono.
     
  17. lansbergen

    lansbergen Senior Member

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    I am not from Norway.
     
  18. msf

    msf Senior Member

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    Oops, sorry, I think I confused you with someone else...there is a patient on here with a Norwegian name who is in a Haukeland trial, I was thinking of him.
     
  19. Gingergrrl

    Gingergrrl Senior Member

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    @deboruth I agree with you on everything you said (although certainly not Simon's fault and he is just the messenger reporting on the study!) But I agree that someone could still be extremely ill for decades but somehow be able to work 5-10 hours per week which would count as a "part-time" job. Plus others may be mild to moderately ill but killing themselves to continue working but have no other quality of life. At closer look, this study does not give me much hope.
     
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  20. GracieJ

    GracieJ Senior Member

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    Confirmed mono at age 35 preceded my symptoms worsening from a fibromyalgia definition to an ME definition. Reading this article was interesting, but it seemed somewhat misleading. Of course, working as opposed to being housebound or confined to bed is a much, much better "outcome" for anyone, but this disregards quality of life long-term. Were these people completely self-sufficient? How would they rate their own quality of life? I am not expecting answers to those questions from this study, of course, but it brings up factors to be used for the future.

    Currently, I am working part-time, and have been for nearly three years. My job is mostly physical, but with this illness, ANY job is physical. Sitting behind a desk is hard for me. My future is a question mark. My case looks good on paper - 75% function, back at work, mostly self-sufficient. But... my outcome is still being written. Can I make it to retirement age without a major crash and burn? Can I sustain this? Will I need more help? What happens to me with no retirement fund? Sure, I am ahead of the game earning a paycheck, but it does not take away other realities. I am still seen as short-sighted and irresponsible, for instance, that I do not have a retirement fund.

    Quality of life? Fantastic compared to being confined to bed. Still poor, though, as I have to come straight home from work and do little more than rest flat on my back. If income is the measure, I am cutting it. But we need far more factors than that to call it a great outcome.

    Long-term sustainability is my biggest goal in life right now!
     
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