The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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What is the course of your ME/CFS?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by JaimeS, Nov 12, 2017 at 6:17 PM.

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What is your ME/CFS course like? (Please answer only if you've been sick for 6-mo or more.)

  1. Relapsing-remitting (periods of better wellness and periods of worse wellness)

    19 vote(s)
    32.2%
  2. Secondary-progressive (relapsing-remitting, but with a slightly worse 'recovery' each time)

    20 vote(s)
    33.9%
  3. Primary-progressive (gradually worsening with no relapsing-remitting pattern)

    9 vote(s)
    15.3%
  4. Progressive relapsing (gradually worsening, with occasional sharp drops in wellness)

    11 vote(s)
    18.6%
  1. JaimeS

    JaimeS Senior Member

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    Please read before responding.

    I'm wondering whether people who have ME/CFS are willing to check off what their 'pattern' of ME/CFS is like. For the sake of expediency, I've copied the types of multiple sclerosis. I'd love to also characterize early vs later on in terms of symptoms, but for now I'd like to focus on overall course.

    [Edit: some clarification...

    Second answer choice might be better stated as:
    Secondary-progressive (relapsing-remitting, but general course of worsening)

    Fourth answer choice might be better stated as:
    Progressive relapsing (occasional sharp drops in wellness that are permanent; no remitting phase)

    ...you can change your answer if necessary. Thank you!]

    [Edit 2: Not relapsing-remitting AND not getting worse overall? Please mention in the comments. Thanks!]
     
    Last edited: Nov 12, 2017 at 8:30 PM
  2. Mary

    Mary Senior Member

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    Hi @JaimeS - mine doesn't relapse or remit. I just stay the same, except for some energy improvements made with certain supplements. But my energy envelope remains the same - 3-1/2 to 4 hours of light activity. Maybe you could add an option for an answer for basically staying the same? I've been sick for 19 years.
     
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  3. lior

    lior Senior Member

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    If there was an option which described relapsing-remitting, but gradually improving, I would tick that.

    At the beginning I was bed bound. Now I have short periods of being housebound, but mostly periods of being able to work a few hours a week, and periods of being able to work 3 days a week, lasting a few weeks at a time. A bad day now is much better than a bad day was at the start of my illness. I am gradually getting better. I have been sick for 14 months.
     
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  4. JaimeS

    JaimeS Senior Member

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    That's actually what made me want to discuss 'early' vs 'later on' because I have improved; however, I still relapse-remit without worsening overall, so I'd recommend the first option since it doesn't specify you're getting worse.

    Added: Not relapsing-remitting AND not getting worse? Please mention in the comments. Thanks!

    Sensibly, they won't let you alter a poll once it's live. Frustrating, but I understand why.
     
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  5. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    My vote: Not relapsing-remitting AND not getting worse.

    If i dont do too much the symptoms stay the same. My legs are a bit more lactic than at disease onset, but some other symptoms are not as bad, so id say its status quo.
    Sick for three and a half years.
     
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  6. TreePerson

    TreePerson Senior Member

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    After several years (4) of being very ill, I stabilised to the pattern described in the first option. This lasted for about 15 years. About 5 years ago this changed and my ME has become the second option.
    And now I am relapsing remitting worsening I occasionally also suffer sharp drops as described in fourth option.
     
    Last edited: Nov 13, 2017 at 8:42 AM
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  7. Rossy191276

    Rossy191276

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    Great question Jamie I have never seen a formal recognition of worsening over time being so common.. Why is this not talked about more often I wonder when I hear people in groups saying it all the time... there couldn't be a better example of someone who has been relapse bought on by exertions with less recovery each time where first time I got back to being virtually symptom free and running again to point after 3 major relapses where I am now bedbound and have only just started talking again quietly for a couple of minutes after 4 months... one weird thing with me however is that while I had severe brain fog early in disease I no longer have it as long as I don't exert physically or emotionally even though I am very very severe in physical symptoms...
     
  8. Cheesus

    Cheesus Senior Member

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    I am with Mary. My ME just doesn't budge one way or another. Stubborn as a mule.
     
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  9. aaron_c

    aaron_c Senior Member

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    Add another vote for basically staying the same. Yes, some symptoms do fluctuate enough to make making plans difficult, but they fluctuate within a certain range that doesn't really change.

    And as @Mary said already, many of the fluctuations are due to changes in supplements or changes in my body's reaction to supplements.
     
  10. Wonkmonk

    Wonkmonk Senior Member

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    I can very accurately pinpoint the start of my disease in 2007. From there, it went downhill veeeery slowly over several years. It didn't even occur to me that I could be sick until 2014.

    Everything deteriorated massively after my thyroid removal for benign overactive tissue. Things also get worse after infections (until 2014). As long as I was untreated, I never had periods of significant remission, it was only getting worse - until January 2017, when I started antiviral therapy, which is helping a lot.
     
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  11. lansbergen

    lansbergen Senior Member

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    I was worse everytime after a flare. When I started taking the immunemodulator I was a little better after a flare. It was very slow improbement but over time it made a big difference.
     
  12. Countrygirl

    Countrygirl Senior Member

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    I found it difficult to find an appropriate box to check.

    For ten years, I progressed from mild to moderate during which time I caught every infection possible it seemed and could never recover properly from them. I had repeated severe chest infections and pneumonia and then had a diagnosis of double bronchiectasis on account of the damage caused by the infections.

    Then I became severe very abruptly, almost overnight. This lasted and progressed for about 35 years. I have not had a cold since.

    Now, although some of symptoms are milder for some periods of time, I have meanwhile developed a number of other autoimmune diseases and cardiac and severe blood pressure problems (my hypotension abruptly reversed into stage 3 hypertension and instead of my BP plummeting when I stand on my feet (to 50/40 leading to fainting) it now shoots up to as high as 250/140 and is causing organ damage. I find the present combination of conditions with more fluctuating ME more unpleasant and distressing than severe ME alone.

    It would also be an idea to investigate what other conditions we develop after several decades of this illness. For example, a doctor I consulted in the summer told me that others who had been ill for decades were also experiencing the sharp spikes in severe hypertension aka malignant hypertension.

    I have ticked the first box, although it doesn't accurately describe my history.

    Thanks for the thread though @JaimeS . Good idea!
     
  13. JaimeS

    JaimeS Senior Member

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    I myself was saying, "the relapsing-remitting pattern is most common" and checked myself before I wrecked myself. ;) I realized I wasn't actually sure and didn't know where I'd heard it from.

    Some still relapse-remit with an overall experience of worsening, but in my head the most common pattern was relapsing-remitting and staying about the same (after the first few years of illness, anyway).

    Eeep, but me too. I still have periods where I'm worse and periods where I'm better, but the overall landscape hasn't changed. I still chose #1.

    If it were just about going off or on supplements that's nothing to do with the internal milieu. But if your reaction to a familiar supplement changes, making you worse, and you have to juggle everything until it's right again (which also often happens to me as well)... at least to me it implies a kind of shift?

    Ehhhhh, but after arguing that out, I'm on the fence about it. ;) Choose what you think fits best.

    From the survey by #MEAction last year, this really IS the most common experience of ME/CFS. People identify their trigger b/c it's often easy to pinpoint; but if you give people the option of a "combined" onset (both insidious and sudden) they'll choose it. It was the most commonly chosen option on that survey, though there were plenty of people who chose the others.
     
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  14. TreePerson

    TreePerson Senior Member

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    What immunemodulator did you take Ian?
     
  15. JaimeS

    JaimeS Senior Member

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    Just had my first cold in 3 years, @Countrygirl ... everyone in the house said "congratulations!" :eek::rofl::rofl::rofl:

    Of course, no robust immune response: sneezed several times a day, coughed lightly and delicately (!), ran a fever of 99.8F (that's 37.7C... barely a fever at all), sweat and shook by turns, and PEM'd until better.

    Ohhhh nooo. :hug:

    In this article (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3860797/) they discuss using clonidine, since a great deal of these issues are caused by spikes in adrenaline and noradrenaline. But with hypotension sometimes and hypertension other times, it gets thorny.

    Yes, longitudinal studies are where it's at!

    I appreciate that. It's always more complex than the neat little boxes created to describe patients... it probably is in MS, too.
     
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  16. lnester7

    lnester7 Seven

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    Well I would say relapsing remitting and not getting worst ( except that to that last relapse for trying to run).
    But at the same time I keep collecting autoimmune diagnosis. So Cfs is affecting my overall health ( or maybe age)?!!!!!
     
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  17. Countrygirl

    Countrygirl Senior Member

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    @JaimeS

    Many thanks for the paper reference. I may send it to my doctor when I have studied it.
     
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  18. lansbergen

    lansbergen Senior Member

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    I still do. Levamisole
     
  19. justy

    justy Donate Advocate Demonstrate

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    For me this was where i was at in the early years. I think this pattern is more normal in the first years and changes quite a bit over longer periods of time. Most people sick over 20 years seem to be picking up a lot of co morbids and autoimmune stuff and general worsening.

    I also recently had my first cold in about 7 years. Sadly, as i suspected it wasn't a wakening of my immune system, but a worsening back to the beginning of my illness when i caught everything going. I no have flu and chest infection straight after the cold. No temperature though, unless you count 98.7 as a fever, which is the highest my temp has gone in years.

    I suspect its a myth that we should be pleased to have infections again, at least for some of us.
     
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  20. aaron_c

    aaron_c Senior Member

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    I was thinking of "relapsing remitting" as more like people who sometimes "spontaneously" get mostly better for a while (I saw someone speculate this is more common in onset triggered by EBV?). I thought with MS relapsing-remitting the relapses aren't generally seen as being caused by anything other than perhaps stress? Aaaand as you say, having argued this I'm now ambivalent :whistle:.

    I'll tick the first box. Hope it helps!

    Probably depends on the circumstances? With a lot of things I can trace the problem back to yet another supplement I'm taking that has upset my use of a third thing. Like B2 messing with boron, which increased my apparent need for molybdenum, which all went to hell when I added boron back... Most herbs, on the other hand, work only briefly for me. Tracking my illness just gets so muddy because I'm always tinkering.
     
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