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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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

meandthecat

Senior Member
Messages
206
Location
West country UK
Third week of September 2005, a severe virus ' like being hit by a train' . 3yrs going down and 7 coming back, generally a downturn in the winter and a slight rise in the spring, more noticeable as the symptoms became less severe. South west England
 
Messages
47
Location
Los Angeles
October 2009. Gold Coast, Australia. I live in Los Angeles but my husband was filming there so we went with him as I'd just given birth to our first child. Within a week of arriving I knew, looking back, that this was more than just post-natal discomfort.


Edit: What I meant to put across but didn't effectively was that I went from a very hot LA summer whilst heavily pregnant, to a place where temps were in the 90s and 100s from October thru Jan. I feel certain that heat was a factor.
 
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Mary

Moderator Resource
Messages
17,386
Location
Southern California
West coast U.S. - Very slow onset - health first started to go south in spring 1985, and kept going south, and had first ME/CFS crash in fall 1998. And have been crashing like clockwork ever since, have low NK cells, etc., though no brain fog or pain. I don't recall any viral infection causing the initial decline.
 
Messages
23
Mid September (fall - in N. America) in 2004.

6 weeks after visiting Michigan and camping there - may have gotten lyme, but zero herx on doxy, Zithromax, Flagyl or clarithromycin.

Had a flu-like illness, but no vomiting, just numbness and weakness that moved up my legs. The acute episode resolved in a week, but it took 3 months for me to be able to jump or jog with any coordination and I've had worsening post-exertional fatigue since. I can force my way through a CPET bike test - my oxygen drops to 93%, my HR stays at 140. The doc told me - you are actually in good shape - you didn't slow down on the highest resistance, but your VO2 max is reduced and something is off with your HR and oxygen, but I can't put my finger in it.

PDK enzyme inhibition makes total sense, maybe the low O2 is from a touch of diaphragmatic weakness.
 
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Little Bluestem

All Good Things Must Come to an End
Messages
4,930
I came down with the infection that I blame for my ME/CFS on March 23, 1986. I sometimes wonder if I would have been OK if I had received enough antibiotic to avoid the rebound infection that hit March 31.
 

Countrygirl

Senior Member
Messages
5,476
Location
UK
1972 late spring Oxford England. Started as a severe, undiagnosed infection, and encephalitis. Struggled on with what I would now call mild ME. Then in April 1982 in SW England suddenly severe overnight.

Over the years, I have heard of other students of the same age as me in Oxford who also developed ME and couldn't continue with their professions. Probably just coincidence, but just maybe 'something' was infecting all of us that made us prone to developing ME.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
January, winter, 1998 glandular fever which drifted into ME.

Also winter 2000 ME became disabling (unable to work/study) after ear infection

But major relapse hottest week of year July 2012 after tonsillitis and busy week (this might have been more POTS than ME).
 

ladycatlover

Senior Member
Messages
203
Location
Liverpool, UK
Hope I'm not too late to join in on this. I think this might be my first post here!

March 9th 1992 Liverpool, UK - sudden onset with what I thought was a mild virus at the time. Just chills and needing to sleep. Initially did manage a few days back at work, but felt dreadful. So my lovely GP signed me off sick, and I never returned to work (that's a story in itself!). Since then I've very gradually declined, to the extent that I'm at the severe end of moderate.

At the time I was working in a lab, culturing blood etc. I had Hep B course of vaccinations at start of this job, approx 4 years before I became ill. I have always wondered if this was one of the triggers of my illness, but this isn't the place to go into detail I guess.
 

unto

Senior Member
Messages
177
May 1985 Italy,
tiredness / sleepiness sore throat / ears and long periods took away my voice (if I'm not careful I also removes the now) digestive disorders also strong ...
then 1 + 1/2 years after the onset of a very sore from head cold that it lasted months m'è
and now (such as sore throat and ears) .I keep an eye on
it all depends on when it encounters the virus.......not the season
 
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