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...
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I need your first month/season/year of illness for research please?

Discussion in 'General ME/CFS Discussion' started by Sandman00747, Jan 23, 2017.

  1. Sandman00747

    Sandman00747

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    United States, Kansas
    Would you please just tell me what year you got sick and what season of the year it was or as close as you can get. I'm doing some research to show to a couple of ID and research docs. Thanks all!
     
    Last edited: Jan 24, 2017
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  2. purrsian

    purrsian Senior Member

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    I first had glandular fever in Sept 2003, although I didn't get actual ME straight away. I was never quite the same after the glandular fever, but didn't start declining and getting bad PEM until 2006. I'm not really sure what set it off then, although it was near the start of the year so perhaps the xmas period stressed and exhausted me too much.

    One thing to note: if you're looking at anything seasonal (like if we tend to get sick in winter or something along those lines) then you need to look at season over month. I'm in Australia, so I got glandular fever in spring, while I first severely declined and started looking for a diagnosis in summer. Not sure if that's what you're looking at or not, but could make a big difference to your analysis as there are quite a few Aus/NZ peeps around PR :)
     
  3. *GG*

    *GG* Senior Member

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    Concord, NH
    May 2003.

    GG

    PS You might want to change Title to be more specific. Perhaps the small favor title will not grab much attention?
     
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  4. Sandman00747

    Sandman00747

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    Great points Purrsian! Thanks for your imput. I greatly appreciate it on one of my duller days! I will edit my post!
     
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  5. Sandman00747

    Sandman00747

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    United States, Kansas

    Thanks GG. I'm having one of those difficult days.
     
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  6. Hutan

    Hutan Senior Member

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    March 2013 in the Southern Hemisphere. So late summer. 3 of us in my family became ill, all at that same time.

    When I was young, I was sick for about 10 months with what was diagnosed as ME - same symptoms as now. That started in March 1976 (late summer). I had not realised until now that the time of year was consistent for both onsets.
     
  7. Cohen2

    Cohen2 Senior Member

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    New Zealand
    About June 2003, Southern hemisphere so winter. Interestingly I had a similar onset to @purrsian, also probably triggered by Glandular fever.

    This could be interesting but you may need a lot more data than you can get here if you are trying to find patterns
     
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  8. arewenearlythereyet

    arewenearlythereyet Biscuit Antagonist

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    I didn't have sudden onset. I had what I believe now was adrenal fatigue whilst already being depleted of b12/folate/ b6/biotin (for 10 years plus with peripheral neuropathy). The adrenal fatigue happened over 6 months before getting noravirus in Autumn (October) which I recovered from after a week off work. This was followed by a further bout of noravirus in February (winter). Following recovery from this I got a raft of skin infections from everyday small scratches, my peripheral neuropathy got suddenly worse and I then slowly declined over the next 4 months before getting PEM episodes proper and brain fog. The symptoms rapidly got worse after that. I was then diagnosed with CFS (took 6 months). In all from start to finish my onset was about 8 months to a year.

    I have all the symptoms of CFS and have been diagnosed by a specialist after discounting all other diseases using 2 scoring criteria (Canadian and one other ...can't remember)

    I believe there is a large subset of people that have CFS/me that don't fit into the viral model of sudden onset although do end up with dysfunctional mitochondria/immune system in the end. Anecdotally it seems that around 30% of sufferers seem to have the sudden onset. I say this because I keep seeing a third crop up in a number of studies and I wondered whether anyone had a view on this? Perhaps change the title to include sudden onset from virus to screen out the gradual onset people?
     
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  9. valentinelynx

    valentinelynx Senior Member

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    Tucson
    Spring 1993, Northern California
     
  10. Matthew Jones

    Matthew Jones Senior Member

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    February 2011.
     
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  11. halcyon

    halcyon Senior Member

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    February 1st 2014, Northern California.
     
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  12. trishrhymes

    trishrhymes Senior Member

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    UK
    Myself: Late October 1989, Autumn, UK.

    My daughter: November 1997, Autumn, UK.
     
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  13. Joh

    Joh Inactivist

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    Germany
    December 2002, Sweden.

    Never the same since mono, summer 1997, Germany.
     
  14. Jan

    Jan Senior Member

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    Devon UK
    September 1990 UK, following a 'glandular fever type virus'. This is when I first became ill with the virus, which became Post Viral fatigue Syndrome. Diagnosed by Dr Weir at the Royal Free Hospital early the following year.
     
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  15. Apple

    Apple Senior Member

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    2004. UK.

    Something wasn't quite right from Spring onwards (BCG vaccine?). I was 'fine' and at school and doing normal teenage things but struggled with nausea, brainfog (my grades slipped a lot), tiredness and any type of sport. Then by Oct/Nov I completely crashed and was diagnosed with glandular fever (mono) and never got better.
     
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  16. Dechi

    Dechi Senior Member

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    February 2013 and december 2014. Both times during the canadian winter.
     
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  17. PatJ

    PatJ far and free I gaze

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    2003, I think during summer. I came down with a one day 'flu' that cut my energy level permanently by 50%. I was working a stressful job at the time.

    In 2004 I also had a one day 'flu' that cut my energy permanently by another 50%. I think that was during summer as well. I was even more stressed than the year before. It was gradual decline from then onward.

    I'm in Canada.
     
    Last edited: Jan 24, 2017
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  18. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Toronto, Canada
    Aug 9, 2012 (summer in Canada).

    But 2 relapses, both in December (one relapse was the day after returning from Mexico).
     
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  19. hellytheelephant

    hellytheelephant Senior Member

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    S W England
    February 1993-Winter UK
     
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  20. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    USA
    December 3 1990, late fall: USA
     
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