What is the course of your ME/CFS?

Discussion in 'Post-Exertional malaise and fatigue' started by JaimeS, Nov 13, 2017.


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)

    30 vote(s)
  2. Secondary-progressive (relapsing-remitting, but general course of worsening)

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

    28 vote(s)
  4. Progressive relapsing (occasional sharp drops in wellness that are permanent; no remitting phase)

    15 vote(s)
  1. JaimeS

    JaimeS Senior Member (Voting Rights)

    Stanford, CA
    I've asked on The Other Forum (TOF) as well, so please don't respond in both places. :)

    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: Not relapsing-remitting AND not getting worse? Please mention in the comments. Thanks!]
    Last edited: Nov 13, 2017
  2. Esther12

    Esther12 Senior Member (Voting Rights)

    For me, it fluctuates, but it's hard to distinguish between long-term changes in my 'condition' and differences in other things that affect my health, eg: external thing in my life changing, getting better at managing my symptoms, etc. It's hard to distinguish between change.

    I clicked 'relapsing-remitting', but feel like that may make it sound like there are big variations than there are.
  3. TigerLilea

    TigerLilea Senior Member (Voting Rights)

    Metro Vancouver, BC - Canada
    I voted 'relapsing-remitting' but I don't know how much of that is related to my allergies and sinus issues. But then again there is a good chance that they are related to my ME anyways.
  4. Alvin

    Alvin Senior Member (Voting Rights)

    Mine has been very slow progressing but getting worse and worse, never upwards.
    coFi94, Patient4Life, Angel27 and 9 others like this.
  5. AliceLily

    AliceLily Senior Member (Voting Rights)

    I voted the 1st one but it could be that I am the 2nd, 3rd or 4th.

    My ME has been progressive through mild to severe and now I don't know what is really happening at this stage of disease. I feel a worsening in some ways.

    Edit: Changed my vote to 'secondary progressive'.
    Last edited: Nov 15, 2017
    hedgehog, MeSci, Yessica and 2 others like this.
  6. Mij

    Mij Senior Member (Voting Rights)

    I voted the lst one. I'm not progressing and don't have other health issues. As long as I stay within my energy boundaries I'm ok, and if I have a viral re-activation I will eventually recover and return to baseline.

    I've had this illness for almost 27 years.
  7. Webdog

    Webdog Senior Member (Voting Rights)

    Holodeck #2
    Secondary-Progressive (relapsing-remitting, but general course of worsening) probably best describes my ME/CFS.

    However, in addition to the "relapsing-remitting, but general course of worsening", I've also had a number of "occasional sharp drops in wellness that are permanent". After the "sharp drops in wellness", I reenter a "relapsing-remitting, but general course of worsening" at a lower level.

    Had I been correctly diagnosed earlier not continually encouraged to try to do more, I likely would have been able to avoid some of the "sharp drops in wellness" and would have a higher health baseline.

    So it's really been a mix of Secondary-Progressive and Progressive Relapsing. That is, relapsing-remitting, with not so much a "general course of worsening", but worsening by "sharp drops in wellness that are permanent".

    ETA: I'm currently in a 4 year relapse, or perhaps my days of remitting are over and I've switched to "Primary-progressive (gradually worsening with no relapsing-remitting pattern)". My relapses and remissions have always been between 1 and 4 years duration throughout my 4 decades of illness. Time will tell if I remit again, I suppose.
    Last edited: Nov 13, 2017
    AliceLily, Aroa, JaimeS and 2 others like this.
  8. NelliePledge

    NelliePledge Moderator Staff Member

    UK West Midlands
    I'm genuinely not sure which to tick. I only got diagnosed 2 years ago although I have had mild me symptoms for several years before that. I had a worsening 2 years ago and have been worse again since August - more moderate when I'm worse. I find it hard to unpack what has caused ups and downs over that time partly due to the impact of going through the menopause. I'm hoping that I'm relapsing remitting but could be secondary progressive.
    MEMarge, AliceLily, Aroa and 4 others like this.
  9. Hoopoe

    Hoopoe Senior Member (Voting Rights)

    Fluctuating. Seems to very slowly get worse over time but it's hard to distinguish that from consequences of a sedentary lifestyle and aging.
    AndyPandy, Aroa, TigerLilea and 3 others like this.
  10. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    For the 1st decade it was relapsing remitting but then it seemed to change to primary progressive.
    Aroa, JaimeS, MeSci and 1 other person like this.
  11. alicec

    alicec Senior Member (Voting Rights)

    Brisbane, Australia
    I picked the second option. Have only had one remission. The relapse was worse than the original illness and I'm slowly getting worse. Whether there will ever be another remission who would know?

    And yes how to distinguish getting worse from the disease and the consequences of sedentary lifestyle and ageing is a difficult question.
    MEMarge, MErmaid, Aroa and 4 others like this.
  12. TiredSam

    TiredSam Committee Member

    Me too. Clicked the first one.
    MErmaid, Aroa, MEMarge and 1 other person like this.
  13. chrisb

    chrisb Senior Member (Voting Rights)

    Don't misunderstand me. I think this is a useful question, but may need some tweeking. Is the question merely asking about the current phase of one's condition? I do not think I could quite fit my condition into any of the alternatives at any of its stages, following an acute viral onset.

    I would say that I had a period of relapsing/remitting on a cyclical basis, with a cycle of about three weeks, but sometimes extending to about five. But I could not describe the relapses as "worse wellness". They were definitely illness.

    The second phase was generally ill, with much reduced capacity, but with occasional spells of better health, perhaps six to nine months apart, and lasting for perhaps two or three weeks.

    EDIT the first phase lasted 10/11 years, the second about twenty.

    The third stage is generally ill with no periods of remission, although there may be varying degrees of unwellness.

    Within each phase there has been no particular feeling of gradual worsening.

    As a result I don't think I can reply to the question.
    Last edited: Nov 13, 2017
    Ellie_Finesse, Aroa, MEMarge and 3 others like this.
  14. Trish

    Trish Moderator Staff Member

    I think my answer would have been different if I'd been asked it at different times during the 28 years. Over short time periods of a year or so, I would look back and say for that year I had a fluctuating condition, with periods of a few weeks at a time when I 'relapsed', then gradually returned to previous level.

    Now, looking back over 28 years, those short term fluctuations I just see as temporary PEM due to overactivity, stress or infection, not as relapsing/remitting of my overall state.

    Now I look back, and see that my health has steadily declined from mild through moderate to severe, with periods of approximately 10 years at each of these 3 levels. So I chose option 3, primary progressive.

    If you are going to use this information in any kind of research or summary, I think it will only be useful if you clarify what you mean, and split the sample according to how long people have been ill.
    coFi94, ProudActivist, inox and 16 others like this.
  15. Valentijn

    Valentijn Guest

    Might be easier to focus on a specific time frame, which excludes the first year or two when the disease is establishing itself. It was definitely progressive relapsing in the first 6 months for me, then mellowed out a bit to primary or secondary progressive. I seem relatively stable now, so perhaps more relapsing-remitting, with some weeks or months a bit better and some a bit worse.

    But I've also developed diabetes about a year ago, which is strongly related to my ME issues, and would seem to suggest a progression of the disease. And it's hard to factor in the impact of pacing, treatments, and lifestyle adaptations.
  16. Maria1

    Maria1 Senior Member (Voting Rights)

    North England
    I clicked the first one. However, I find it very hard to judge how I am overall as I’ve noticed I tend to do so depending on how I am at the time.

    So, for the last couple of months I have been feeling bad after a few months of feeling probably the best I have since I first got ill 5 years ago. However I still get good days in amongst the bad, and bad days (probably PEM mostly but I don’t know any more) in amongst the good. It's possible that I am in a long crash after months of over exerting myself. I always over exert myself when I'm feeling well, but I would find it unbearable not to.

    In a bad spell, if you give me one good day I am so overwhelmingly relieved to feel relatively normal, I forget how awful I felt yesterday. I feel like an elastic band that’s been stretched so tightly the relief of being released is amazing! Then, feeling crap again the next day is even worse as it’s mixed up with the disappointment of the good day not carrying into more days.

    For the first couple of years of illness I rarely had any time when I felt normal. I remember having a good spell of 2 or 3 days after a year of crap and it was just incredible to remember and feel what ‘normal’ felt like.

    In all I’m better physically than I was overall but, as others have said, that may be down to managing symptoms better over time, also getting thyroid and vitamin deficiencies sorted.

    On top of everything I've just said, I am concerned that my cognitive functioning is gradually worsening. Again, I have good and bad brain days but feel more and more mentally incapable.
  17. erin

    erin Senior Member (Voting Rights)

    I struggled to choose between the 2nd and the 4th. But I'm an optimist I thought the second options is maybe more appropriate in my case.
    AliceLily, TigerLilea, JaimeS and 2 others like this.
  18. Nellie

    Nellie Senior Member (Voting Rights)

    Really sorry but can't decide.
    AliceLily likes this.
  19. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

    I found this difficult to choose. I'm mild moderate gradual onset so it's difficult to tell how long this has been going on. I choose to start my onset year to be that when my symptoms first incapacitated me 4 years ago, rather than the earlier warning signs ( given beta blockers for heart palpitations in 2005, diagnosed with transient asthma in 2006, numb extremities since 2005 etc). I haven't counted the first bad year before I was pacing properly and reached baseline.

    On that basis I put option 2, mainly since the OI symptoms have been increasing at pace since April this year and have set me back quite a bit. This may be temporary ...I'm still waiting.
  20. EzzieD

    EzzieD Senior Member (Voting Rights)

    Hard to choose for me, too, the first choice being the nearest. Started out severe, got progressively worse for the next 8 years, then improved notably when I was able to get treated for Lyme Disease two years ago at a private clinic (NHS wouldn't do anything for me whatsoever, except to offer to refer me to the local 'Fatigue Clinic' for psych treatments. Yeah, thanks but no thanks). The antibiotic treatments for Lyme wiped out a 'layer' of illness, whether what I really had was Lyme or another infection (since there are no reliable tests for Lyme), to where I'm now thankfully moderate-to-severe instead of very severe. Am mostly housebound but at least not bedridden. Since the antibiotics, my condition has stayed at a plateau from which I haven't had any improvement since, and within that, it follows a relapsing-remitting course of flaring up and settling down.

Share This Page