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"ME/CFS in Children" by David S. Bell MD

Discussion in 'General ME/CFS News' started by Webdog, May 14, 2016.

  1. Webdog

    Webdog Senior Member

    Fascinating reading for anyone who suspects they had childhood ME/CFS onset.

    A few excerpts:
    Did anyone else get the teen facial flushing rash? Abdominal pain? A childhood ADD diagnosis? Have medical providers not believe your neurological symptoms?

    Does anyone else suspect that "during adolescence the symptom pattern coalesces into that of ME/CFS, so that it becomes possible to say that ‘in retrospect’ the illness began in early childhood"?

    I was surprised the article did not mention vision problems.

    Hope this proves interesting to others with childhood/teen ME/CFS onset.
    Dolphin, Richard7, Sasha and 3 others like this.
  2. Forbin

    Forbin Senior Member

    I saw doctors a couple of times for unexplained abdominal pain in my late teens and had abrupt, post-viral onset of ME in my early twenties. I rarely saw a doctor back then, so the abdominal pain must have been pretty out of the ordinary.

    In college, about two years before onset, I had a very extreme case of "food poisoning" which lasted 2-3 days and was so severe I was considering going to the E.R. If there is a G.I. infectious pathway to ME, I'm really suspicious of that episode.
    Last edited: May 15, 2016
  3. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    As a child I had severe photophobia. Eventually I needed dark glasses on bright days, though I do not recall getting any till I was a young adult. I wish there was more research follow-up on encephalitis survivors.
    Richard7 likes this.
  4. justy

    justy Donate Advocate Demonstrate

    I also had severe photophobia as a child but no one believed me. back then they didn't give kids subglasses so I just suffered a lot. My daughter who was sick as a teen had severe stomach pain.
    Richard7 likes this.
  5. Richard7

    Richard7 Senior Member

    Photophobic too, I am also a glare and pattern glare migrainer. Which is to say I fall under that category of migrainer that has migraines triggered by glare of spacial or temporal high contrast patterns - say fluorescent light or the grid patterns made by the shadows of fences on the footpath/pavement/sidewalk.

    It is exactly the same trigger as triggers epilepsy in some epileptics, and the contrast does not have to be light to dark it can be between stimulating one set of cones to stimulating another. There was a tv episode in Japan that triggered a lot of epileptic seizures by switching rapidly from one colour to another and back again.

    As far as I can tell I have always had the photophobia. I know that from looking at childhood photos of me that the ones of me at the beach and other bright places show me squinting from say 1 year old onwards. Most of my siblings have the same problem.

    Indeed I was looking at some photos of some nephews who are about 18 months now and they too are rather photophobic.

    Two of my siblings had CFS in their late teens/early 20s.

    Which does not mean it is genetic. I have had worsening of symptoms with some probiotics. And its only anecdotal but I did have a conversation with an optometrist who said that in his experience patients who resolved gut problems seemed to loose the photophobia at the same time.

    I cannot remember stomach pain, I can remember nausea which seemed to be constant or at least continuous. But I was spending 200 days a year in fluorescently lit classrooms. I thought the nausea was most likely due to the migraines, but maybe not.
  6. Richard7

    Richard7 Senior Member

    Interesting the page on vision the @Webdog linked too states
    1 and 4 are the norm for me, but at the moment their severity seems to roughly track the severity of my ME. 3 is pretty common, short periods every day. 2 is interesting.

    A few years ago I went for an eye checkup and was unable to focus on the cards they were showing me. I was unable to change my focus. When I explored it at home I found I had one eye permanently focused at a medium distance say 3m, which was ok for reading the eyechart at the optometrists, and the other focused closer say 60cm or therabouts.

    It seems a sensible solution to not having enough energy to move those muscles and refocus the eyes.
    Webdog likes this.
  7. redrachel76

    redrachel76 Senior Member

    I once read in the blog of "no poster girl" that she was always the worst at sport in school, worse than the asthmatics. I was also like that at school P.E. I thought I wasn't fit enough.

    Anyone else was the worst at school P.E?
    Mrs Sowester and Richard7 like this.
  8. Richard7

    Richard7 Senior Member

    I know that Myhill writes about this describing patients who as children on a cross country run would make it to the school gate but then walk the rest of the way. Which is pretty much me, but I would walk then jog then walk then jog for the 10k.

    As a teenager I could walk very quickly at about 6 or 7 kmph for just about any distance, and did walk quickly just about everywhere (40km plus a week). At school sports days I could run 100 or 200m without any trouble but would come last. And I would do long jump and high jump, discus and so on, but was never much good.

    I could play field hockey as a wing or a half doing that sprint stop walk jog sprint stuff without any trouble but I afterwards I can remember getting home and sitting on a couch for an hour too exhausted to move or talk. This happened more than once but I do not now remember if it happened every time or not.

    So Myhill thinks this subgroup of pwme/cfs perhaps had an underlying energy problem, and I think that would apply to me.

    I was also probably the worst at sport. I can remember being useless at soccer at 6 or 7. Having trouble catching things, being uncoordinated and ungainly.

    The complication is that I have always being visually impaired with what is called visual disturbance. It is sort of like the field of your vision is full of pixels and maybe 10 or 15% of them flash white or or black or some other shade or tint of the colour their meant to be several times a second.

    Now I wonder if this too is an energy problem. If some of those cones or axons or other cells in my visual system have dodgy mitochondria.

    I was also diagnosed with dyslexia. One of the arguments is that there are two overlapping populations with dyslexia. One that has visual disturbance, gets headaches from fluorescent lights, and benefits from Irlen Filters (coloured glasses) and one that has problems breaking a word down into its component sounds and putting sounds together to make a word. I was in the first group not the second.

    When I got the glasses my depth perception improved and my ability improved. I became one of the best people in my year at playing handball (the type played informally with a tennis ball on concrete or tarmac or another hard surface) but I know part of my success there came from being able to clearly hear the ball. I was still pretty bad at other sports.

    When I was 16 or 17 I did a test at my local university which measures how much you can see in one saccade. A saccade is an eye movement you make 4 or 5 saccades per second as you read. I could see less than one character per saccade without my glasses and at least one but less than two with them.

    So it is no surprise that I often did not really understand the games I was playing, was bad at catching and hitting balls etc. And I do not know how much is down to poor vision and how much to poor energy production, or if there is a difference.

    And yeah I was pretty much the worst person at PE and most sports. Indeed in year seven I probably the worst cricketer in team 7h (the worst team). I never made a run, never caught anyone out and only bowled one person out.
    Webdog likes this.
  9. soti

    soti Senior Member

    count me in for underlying energy problem from childhood. my parents started noticing it when I was about 6, and I had trouble running at school (last, huffing and puffing, beet red).
    redrachel76 likes this.
  10. Mrs Sowester

    Mrs Sowester Senior Member

    I also had no stamina as a child, useless at running and catching. And poor co-ordination.
    I had recurrent tonsillitis and endless courses of antibiotics until I was well into puberty, when the tonsillitis stopped.
    I had terrible problems with low mood and energy in my teens and early 20s which I now wonder may have been the start of the ME to come... The skin sensitivities, reactions to immunisations and IBS arrived in my teens too.

    My daughter was even worse at sports. She had recurrent ear infections as a child, then problems with hormones, fungal infections and food sensitivities as a teen. She developed disabling ME at 21 which has settled into mild ME in the 5 years since.
  11. Tuha

    Tuha Senior Member

    I am opposite. I was always good in sport and was in the national football team till I was 20 years old. Then I got flu and never recovered.
    But I think it started a bit earlier. When I was 16 years old I had a half year period when I felt dizzy, I had tachycardia and some problems with breathing. But then the problems disappeared. What I know that I had always some GI problems but nothing big - I just ignored it.
    Mrs Sowester likes this.

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