Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
Discuss the article on the Forums.

Patterns of illness

Discussion in 'General Symptoms' started by AndrewB, Oct 11, 2011.

  1. AndrewB

    AndrewB Senior Member

    England, UK
    Last year in early june i got very ill, spent weeks in hospital and basically, was back on my feet by early september at around 80% of my former self.
    This year i relapsed at exactly the same time of year, june, and have been stuck in bed ill since.
    I cant walk around at all really.
    Im now really worried that i actually wont go into another period of recovery, even at a reduced rate, the way i did last year.
    Im wondering how may of you have had a similer start to this frustrating and debilitating illness, and id be very interested in your
    paterns of onset, recovery, relapse etc.
    Unlike a lot of people ive read about i dont have 'crashes', im either able to function for a prelonged period of time (8 months after the original onset i was able to function) or i relapse like i am now and am too ill to do anything.
  2. *GG*

    *GG* senior member

    Concord, NH
    Do you have any idea on why you relapse? Does the heat/humidity get to you? Sounds like you have an issue with pacing, but perhaps that is not it?

  3. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Hi AndrewB, this pattern of recovery-relapse is a known one in the history - it was noted particularly in the 90s. Sometimes people eventually relapse and don't recover, and sometimes they get worse, but it sometimes goes the other way too. Because ME or CFS have had no decent epidemiology done, we can't be sure what will happen. Bye, Alex
  4. Enid

    Enid Senior Member

    Similarly relapsing pattern for me but never as severe as the original years, and never as well as previous health in the "better" times. Everything can change on a daily or weekly basis - no long periods of relief. (One just knows the immune system is struggling to keep some infection at bay).
  5. wacat


    Mine is always worse in the fall.
  6. springblossom


    Norfolk, UK
    Same here. I seem to be better during the spring, before getting worse towards the end of summer right through to the following spring. I never operate at full capacity, but it is significantly worse in the autumn/winter.
  7. mellster

    mellster Marco

    San Francisco
    This could be related to reduced immune function due to flu and other bugs season and reduced exposure to sunlight. Since it seems now widespread accepted that reactivating infections wreak hormonal and mitochondrial havoc in the body causing relapses I think it is mandatory for every patient to be constantly on one or more immune modulators until these relapses/reinfection do not happen anymore or significantly lessen in severity - it is probably prudent to stay on modulators/supps forever, possibly at a reduced dosage, if you have a history of ME/CFS as well as monitoring of NK cell numbers and function and viral/bacterial/vitamin/hormone/mineral panels. Also, try and minimize anything that inhibits immune function (e.g. steroids). That's just my opinion though ;)
  8. Boule de feu

    Boule de feu Senior Member

    Ottawa, Canada
    Fall is dreadful...
  9. Sparrow

    Sparrow Senior Member

    When first hit, was mostly housebound, then recovered to around 80% or so over the next 4 months.

    For the next few years got into a pattern of suddenly going under again after a viral illness (very limited, but not completely bedbound), then recovering to around 80% functioning or more within about 8 months.

    Lived at around 60-70% functioning, slowly decreasing over about six years.

    Then crashed out badly over the last two years with the whole gamut of crazy symptoms, becoming bedbound and WAY more ill than ever before this year. Recovery this time seems to be painfully slow.

    This time around is definitely something new (or at least something much worse). I wish I'd had a diagnosis sooner so that maybe I could have prevented things getting this bad. Maybe that's wishful thinking...
  10. little_bird


    I first got ill in September 2006 (EBV). Each year after that I have relapsed completely in September - in 2008 my system completely collapsed and that was when I got signed off work / was diagnosed.

    The relapse lasts until spring, and is quite profound. I'm usually pretty good in spring (though very weak because each relapse costs more muscle tissue); but I go downhill when the summer gets hot. Downhill, but not into relapse.

    However, this year is the first year I have not relapsed in September, since I got ill.

    I am making a pint of probiotic yoghurt and drinking it for breakfast each day (with another probiotic, also B vits, selenium, chromium picolinate, alpha lipoic acid, and CoQ10); then a pint of fresh organic veg juice for lunch. One big bowl of bran - and it seems to be really helping. It seems in my case if I can support my gut I can at least avoid total relapse. Having said that, it's early days and I am treading gingerly...
  11. u&iraok

    u&iraok Senior Member

    I also am better in spring and summer and worse in fall and winter. The change of season from summer to fall is a difficult transition for me--more tired, headaches, more achy--and I don't handle the cold or lack of humidity well. I often get overheated in the summer which isn't good but maybe because I have trouble sweating and that's when I can sweat, I don't fare too badly, and I'm also getting sun which helps me a lot. I can see why ancient cultures used to worship the sun! I am also very senstive to the air and it's better in the summer, maybe more oxygen from plants and them absorbing carbon dioxide and pollution, humidity catching pollution and germs, people not burning leaves, I don't know. I have more trouble with toxins in the fall and winter. I get a virus in February every year, maybe because of lack of Vit D--I'm going to increase my D maybe around Dec or Jan to see if that helps--but after that spring is on it's way and I'm on an upswing (relatively speaking of course...veerrry relatively), as long as I don't try to do too much, which is the one benefit of winter, it's more restful.
  12. ukxmrv

    ukxmrv Senior Member

    My ME symptoms are pretty constant Andrew and I'll never had a remission.

    Started as an acute viral onset and the viral symptoms have continued since then. I was completely well when I came down with severe viral symptoms out of the blue nearly 30 years ago.

    The associated other symptoms like POTs change from season to season. For example winter is much better for blood pressure problems with ME. Allergies against pollen really hit me in the Spring. Changes from season to season are also really bad for me. Heat devastates me in the summer.

    There are other sets of symptoms that can change over 5 -10 years. Sometimes a treatments can help a little for 10 years and then stop for no apparent reason.

    Overall I'm not getting any better. It's a slow decline.

See more popular forum discussions.

Share This Page