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POLL: what triggered you CFS/ME?

Discussion in 'General ME/CFS Discussion' started by Ambrosia_angel, Mar 10, 2014.

?

what triggered your CFS/ME?

  1. Epstein Barr virus (EBV)

    27.7%
  2. Other virus (norovirus, herpes, etc)

    17.0%
  3. bacterial infection of any organ(respiratory, kindney, stomach and so on)

    12.8%
  4. infection of unknown origin

    21.3%
  5. other health problem(s)

    8.5%
  6. injury or accident

    6.4%
  7. stress

    10.6%
  8. medical cause (vaccination, medication, surgery and so on)

    17.0%
  9. unknown cause

    19.1%
Multiple votes are allowed.
  1. Ambrosia_angel

    Ambrosia_angel Senior Member

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    England
    Additional question - Was your onset acute or gradual? Did you know straight away that something was wrong or were you able to continue with life until your symptoms became more prominent?

    I did multiple choice so tick more then one if it was multiple causes.
    I left fungal infection out as that's fairly rare and didn't want too many options.
    I tried to include the most common causes of any chronic illness so I'm sorry if your cause isn't there.

    Post more information if you can. Especially if your trigger is quite unusual.
    NK17 and Radio like this.
  2. Snow Leopard

    Snow Leopard Senior Member

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    Australia
    For me it was the oral polio vaccine (the one that has now been phased out in most Western countries...), rapid onset.
  3. peggy-sue

    peggy-sue

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    Onset happened in a split second. Acute.
    (I was crossing a road, in the middle of a long hike. I was fine when I stepped of the pavement, by the time I reached the other side, I was struggling through a lake of treacle, completely confused as to why I suddenly had to consciously push each leg forward, when previously, my legs had been striding along at their usual, effortless, joyful, high speed. I was very fit.)
    I've been in that lake of treacle for 10 years.
    Ambrosia_angel likes this.
  4. Nielk

    Nielk

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    Queens, NY
    Onset with a vicarious stomach flu.
    Ambrosia_angel likes this.
  5. Mij

    Mij Senior Member

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    Sudden acute viral onset (severe vertigo) that apparently attacked my thyroid. I may have recovered but I was also vaccinated x4 within the next 3 months.
  6. Ambrosia_angel

    Ambrosia_angel Senior Member

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    England
    An infection that attacked your thyroid :eek: ?! Wow I've never heard of that one before. Did you get thyroid symptoms suddenly? Or did you only figure out after that the virus ha gone.
  7. soxfan

    soxfan Senior Member

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    North Carolina
    For me it was severe cramping of my calf...excruciating for days with no explanation. About 2 weeks later I woke up unable to bend my elbows or use my fingers as they were stiff and very sore. This along with a 102 temp...headache...chills...muscle aches. Kind of like a 24 hour flu. I was never the same....over the next 10 years symptoms come and go...change...still only 50 percent of what I was before
  8. Countrygirl

    Countrygirl Senior Member

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    I would have liked to have added another option: exposure to organophosphates and organochlorines. In the UK, these are major triggers. I believe Dr Hyde refers to chemical-induced ME as 'Secondary ME'.Maybe the exposure to the neurotoxin is the trigger that causes the relapse in an individual previously infected by Agent X, whatever it may be.

    A number develop it following vaccination, especially, I understand Hep B. Also in the 80s the antibiotic Septrin also triggered a number of cases of apparent ME. Doris Jones MA investigated this problem and wrote papers about it which are now locked away under the Official Secrets' Act. Some of them were released for a three week period a year or so ago before being withdrawn again for many more decades. There used to be an action group for those who developed ME after taking Septrin. I think it was then withdrawn and re-marketed in the US under a different name,

    C.G.
  9. Pinkheaven

    Pinkheaven

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    ireland
    I got a really bad flu and it came on after i caught it.
  10. Hip

    Hip Senior Member

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    Was that a poliovirus vaccine containing a live but attenuated poliovirus?

    If so, I wonder if ongoing infection with this live poliovirus is causing your ME/CFS? In which case, some antivirals that are effective against poliovirus might be worth trying:

    Lapachol (from pau d'arco herb) significantly inhibits poliovirus.
    Chlorophytum borivilianum herb (aka: safed musli) has potent antiviral effects on poliovirus.
    Chrysophanic acid (found in rhubarb root) inhibited poliovirus types 2 and 3. Ref: here.


    One other thing: do you know that in 2013 the Federal US Court ruled that hepatitis B vaccine caused chronic fatigue syndrome on one patient, and awarded them $1.1 million...
    Last edited: Mar 12, 2014
    Radio likes this.
  11. Ella_14

    Ella_14

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    I contracted infectious mononucleosis at 29, which I've since learned is easy to recover from as a teen/young adult and not so easy once you're out of the early 20's, and either the virus won't shut off or it's done lasting damage to my brain/CNS. I've been ill since that bout with mono ages ago.
    golden likes this.
  12. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Midwest, USA
    Acute “flu” onset. At first I thought I was recovering, although the recovery was so slow that I twice went back to the student health service and told them that I was not recovering properly. They blew me off both times. Five months later, I somewhat arbitrarily declared myself recovered at the start of the fall semester. It was not too many more months until I realized that I was worsening and that I had never really completely recovered.
  13. stridor

    stridor Senior Member

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    Removal of amalgam filling with questionable safety measures (I had no control over drill speed, or coolant). Led to ME and loss of effective thyroid/adrenal function. I did not add to survey but feel free if you can find a "fit".
  14. meadowlark

    meadowlark Senior Member

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    Toronto, Canada
    I had rare outbursts of fibromyalgia since I was 17 (1968). Starting in 1981 I began to have intense, 12-hour migraines and numbing, inflamed pain down my left side. In 2000, the fibro returned on a regular and violent way. I also lost thirty pounds in 6 weeks without even trying, and had a whole list of ME/CFS symptoms (CCC criteria). I was diagnosed with ME/CFS that year. So I guess you could call that an extremely slow onset.
  15. Soundthealarm21

    Soundthealarm21 Senior Member

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    Dallas, TX
    Very gradual onset over many years. We believe it was black mold which leads to pituitary suppression, and black mold itself is toxic (which is not an option in the voting).

    Started with unrefreshing sleep then anxiety then panic attacks then insomnia then depression then finally the PEM started hitting (with plenty more symptoms). This happened over a period of about i'd say 5-6 years, but it really hit home a year and a half ago when no matter how much I rested I was still exhausted and my hormones started going all over the place.
  16. golden

    golden Senior Member

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    Clear Light
    Had heavy exposure to pesticides/chemicals.
    Acute severe onset. Viral like.
    Contributing factors no doubt x2 hospital anaesthetic to remove x4 molars. Plus amalgam filling.
    Vaccinations

    Followed by daily anti biotics for several years
    RoAccutane
  17. ithought

    ithought

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    Wales uk
    I knew I was different to my friends but I don't know if it was an acute onset or not I think it was but I just remember me constantly having ear ache as a child and always being exhausted.
  18. Hip

    Hip Senior Member

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    Dr John Chia's clinical data shows various apparent causes of ME/CFS, and the percentage of ME/CFS patients whose condition was triggered by each cause:

    Chia's Data:
    ———————————————————————————————————————————————
    Probable ME/CFS Cause · · · · · · · Patients
    ———————————————————————————————————————————————
    Chlamydia pneumoniae· · · · · · · · 9.0%
    Epstein-Barr virus· · · · · · · · · 3.0%
    Cytomegalovirus · · · · · · · · · · 1.5%
    Recurrent VZV · · · · · · · · · · · 3.0%
    Recurrent HHV6-like disease · · · · 0.5%
    Parvovirus B19· · · · · · · · · · · 1.5%
    Hepatitis C · · · · · · · · · · · · 1.5%
    Neurocardiogenic hypotension· · · · 1.0%
    Toxic mold exposure · · · · · · · · 1.0%
    Postvaccination · · · · · · · · · · 1.5%
    Enterovirus infection· · · · · · · 54.5%
    Unknown· · · · · · · · · · · · · · 22.0%
    ———————————————————————————————————————————————


    Source:
    Diverse etiologies for chronic fatigue syndrome Chia JK, Chia A.
    Clin Infect Dis. 2003 Mar 1;36(5):671-2; author reply 672-3.



    What's interesting about these figures is the surprisingly high percentage of ME/CFS patients whose condition was caused by Chlamydia pneumoniae — 9% of patients. We know that enterovirus is thought to be a major cause of ME/CFS, so you expect a high percentage of patients to have enterovirus etiologies. But Chlamydia pneumoniae is rarely talked about as a cause of ME/CFS, and yet these figures show that nearly 1 out of every 10 ME/CFS patients has Chlamydia pneumoniae-induced ME/CFS.

    Since Chlamydia pneumoniae is a treatable cause of ME/CFS, and since these figures suggest it is a pretty common cause of ME/CFS, it would really be a good idea for all ME/CFS patients to be tested for Chlamydia pneumoniae infection.

    If you test positive, your ME/CFS may be treatable and curable.
    Last edited: Apr 4, 2014
    Ambrosia_angel likes this.
  19. Sparrow

    Sparrow Senior Member

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    Acute onset, then gradual remission, followed by acute relapse, followed by gradual remission, followed by gradual worsening to profoundly severe levels.
  20. NK17

    NK17 Senior Member

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    I had a series of acute infections as a young child (such as impetigo and mycoplasma pneumoniae which resulted in a bad case of cold agglutinin disease and parvovirus that gave me rheumatic fever, plus scarlet fever), but all that was nothing compared to the nasty case of Infectious Mono that hit me while a freshman in high school, followed by a symptomatic case of Toxoplasmosis (treated for months with rounds of antibiotics) the following year, then the "grand finale ": a glorious VZV aka chickenpox case at 16.

    I hope I don't sound like a ME/CFS poster child, but I'm afraid I'm one and what makes me mad is that nobody ever told me that something was a bit off immunologically wise!!!

    I tried to give my best, during the remissions and all along the way, here I am 30 plus years after this roller coaster onset with a JD that it's pretty much useless and unable to do my part in the world and in my family.

    I've been diagnosed only in 2011 by Dr. Kogelnik, Dr. Chia and Dr. Carlo-Stella (by CCC and ICC).

    The hardest part for me is to think that I've might have passed this awful life-stealing disease to the next generation ;(

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