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Chronic Fatigue Syndrome/M.E. Society watch

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    Hey!
    This thread has become the root thread for the All about M.E society! any one currently suffering with Me. know some one who is, or is just curious to know a little more about M.E and Chronic fatigue. is welcome to join the discussion
    ME stands for Myalgic Encephalopathy (My-al-jik En-kefa-lop-athy)

    The term Myalgic Encephalopathy indicates the pain in the muscles, neurological problems and general suffering that accompany this illness:

    Myalgic: Greek origin meaning muscle
    Encephalo: Greek origin meaning brain:confused:
    Pathy: meaning suffering or sickness:eek:

    There is no known cause of ME as yet, although in young people it most commonly follows persistent viral infection. It is often referred to as Chronic Fatigue Syndrome (CFS) or Post Viral Fatigue Syndrome (PVFS).
    There is no predictable pattern to ME/CFS. The profusion of symptoms can be confusing and alarming and symptoms can fluctuate greatly over short periods of time. with symptoms lasting from 18 months to several years. and in some cases sufferers never reach full recovery and too date there is no known medical 'cure'

    Symptoms
    Fatigue: Utter exhaustion, often to the point of collapse, totally different from the normal tiredness healthy people experience. Fatigue levels fluctuate over the day and are different from patient to patient. Pallor of the skin may be evident when fatigue is worst. If standing, some patients may need to sit or lie down very quickly wherever they are. Many patients experience post-exertional malaise (the delayed onset of fatigue) after too much activity. Persistent fatigue must be present for a diagnosis to be made but is not always the worst symptom.

    Pain: Anywhere in the body but particularly headaches and intense muscle and joint pain, especially in the lower limbs, which is usually difficult to relieve with standard painkillers. hyper sensitivity: skin contact causes intense sensations of Pain .Skin sensations such as skin crawling and pins and needles may be felt.

    Cognitive impairment: Poor short- and medium-term memory, mental confusion and mental fatigue; the brain seems to run out of steam. Difficulty concentrating, word-finding and thinking. Inability to plan. These symptoms together are commonly called 'brain fog'.

    I have Lived 7 years diagnosed and according to national statistics up to 1 in 2000 young people in the uk have been diagnosed or are in the process of diagnoses. but in 7 years I have never Met a single Person My age with the illness.
    is there anybody else out there?:eyeball:

    for more info Check out AYME
    http://www.ayme.org.uk/article.php?sid=10&id=58
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    #1

    my cousin got it wen she was 19, and she lived an amazing life, she got married, had a job, had a beautiful little girl. My dance teacher also has it but shes in remission? i think and takes a lot of medicine but shes living a full life, i do know she was in hospital at one stage and in a wheelchair 1o years ago.

    you can live a full life!

    xoxo
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    I've had it for a couple of years. It's rubbish but I've got a hospital appointment next week to try and help me cope better with it so things are looking up.
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    Yep. There was a thread on it a couple of days ago. I've had it four and a half years now.

    It's myalgic encephalomyelitis. Some people are campaigning to get it changed to a -pathy but it hasn't happened. ME, CFS and PVFS are also three similar, but very distinct things.
    (sorry, it's just been so long that I get really annoyed at people conflating things all the time)
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    There's an online journalist who mentions the fact that he has the condition every five minutes in his articles. Kind of gives everyone else who has it a bad rep I think.
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    I've had it over 4 years. I'm a member of AYME and Foggyfriends, feel free to PM me.
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    One of my friends has it. As a result, she had to repeat a year of school (her main GCSE year) and was only able to take a few GCSEs, because she was off school so much
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    Hey, I have it. I'm from B'ham too lol. I've been diagnosed for about a year, but it all started about three years back.
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    My sister was diagnosed with it around a year ago.
    She is now 14 and finds it hard to cope with it but has become a lot more accustomed to changes in her lifestyle now.
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    (Original post by BigScouser)
    There's an online journalist who mentions the fact that he has the condition every five minutes in his articles. Kind of gives everyone else who has it a bad rep I think.
    Well sometimes its difficult given that it affects absolutely everything you do or try to do. Maybe he's just trying to raise awareness - i can't see how it gives people a bad reputation.
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    (Original post by FadedJade)
    Yep. There was a thread on it a couple of days ago. I've had it four and a half years now.

    It's myalgic encephalomyelitis. Some people are campaigning to get it changed to a -pathy but it hasn't happened. ME, CFS and PVFS are also three similar, but very distinct things.
    (sorry, it's just been so long that I get really annoyed at people conflating things all the time)
    :o: Sorri i didnt know a similar thread was up.
    and yeah it gets my goat too Particulary the distinction between CFS and ME im diagnosed with the latter and am sick and tired with peeps saying " oh...so you like... get tired alot?", i thought that taking a sortuve shotgun approach with the name would help more people.
    At my last appt i was corrected by my doctor, the bloke had sat there for a whole 5 mins saying how( as usual) he didnt know much and couldnt particularly help me. then perked up to correct me with
    " er i belive its clasified as encephalopathy now"
    :shifty:
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    my friend's girlfriend got it last year...
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    (Original post by Addnightshade13)
    At my last appt i was corrected by my doctor, the bloke had sat there for a whole 5 mins saying how( as usual) he didnt know much and couldnt particularly help me. then perked up to correct me with
    " er i belive its clasified as encephalopathy now"
    Ahh my appointments are pretty annoying like that too! I mean, it just seems like note taking from what I'm telling him, but he doesn't seem to actually do anything

    So frustrating!
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    No it isn't. At least not according to the WHO.
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    Suki walk to the well.....

    http://uk.youtube.com/watch?v=Bj5WpaAA9_8
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    my friend at school had it
    got ill at the beginning of year 10
    and never came back to school until his GCSE exams
    passed, although he should have done a lot better, considering he was a genius
    got offered a job in america and amsterdam, working with relatives, but turned them down to go to college
    he's now doing A-Levels at college, part home-schooled, just doing a few hours a week
    hopefully, he'll be fine again soon
    we missed him
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    You sound like a really nice friend. Wish mine were a bit more, they tend to make jokes I'm skiving and then get annoyed when I do well in exams and stuff saying I don't deserve it cos I haven't been at college as much despite me doing extra stuff at home. Least my boyfriend is fantastically supportive.
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    When I was diagnosed (2006ish) it was called myalgic encephalomyelitis. (I know this because I spent a while learning the name!) I'm aware that people wanted to change the name, but I'm not sure whether they went through with it or not?

    I had a rough time during GCSEs and AS levels due to my illness, but I'm lucky enough to have found effective treatment since then. So long as I'm careful not to overdo it, I can function pretty much as normal now.

    (Incidentally, whether or not ME and CFS are distinct from each other is debatable. I know that some people maintain that the illness began to be called Chronic Fatigue Syndrome in order to discredit it (it just makes it sound like someone's really tired). There are people who campaign for the name to be changed back to ME permanently - although my doctors always used them interchangeably.)

    Seeing as it's a reasonably common illness among young people, I've often wondered whether there ought to be a society on here for it. I know when I've been in a bad way, it's been good to talk to people who are going through (or have gone through) the same sort of thing. Would anyone be interested?
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    I would because being in Kent there doesn't appear to be many societies and meet ups, they seem to be more in Sussex according to the M.E newsletters I get.
    Be nice to see what has actually helped people to cope better or even get over it as such.
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    Im sorri to hear your havin such a hard time of it Blink.
    the docs arent much help. but what helped me was pacing and management. i increased my general level of ability by being kind of uber healthy.
    over the course of 18months i went completely veggie and avoided processed foods, gave up sugar, and forced some outdoor activity( whether it was pottering around the garden or going to the cornershop) it gave my body time to rest and established a routine. later on i got into meditation and simple yoga to help manage the pain. M.E is most definately an issue with the body but I found coping with it requires primarily the mind.
    im currently fluctuating between 55 and 70 on the functional ability scale. but im still here! and you should always remember so are you!
 
 
 
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