13 Years Experience ;)

None of the general 'disability' groups seemed appropriate, and my apologies for using the term 'CFS'- search engines always change M.E to 'Me', making it impossible to find ;)

I caught Glandular Fever when I was 17 and never recovered. That is the short story; the long one is very long and typically depressing. I have worked for only 2.5 years of my adult life, and am severely affected (around 25-30%). I do however have plenty to say and try to experience as much as possible, if only vicariously.

I am sure in the knowlege that this is a serious physical neurological illness. I am up to date on all the current research I can find as I find looking for rays of hope uplifting, and I'm up for sharing experience on living with a neurological impairment, or anything else for that matter.

Oracle Oracle
26-30, F
6 Responses Aug 1, 2007

Hello, Oracle<br />
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Altho this is the first time I even heard of M.E., I too suffer from multiple neurological issues, all the way from headaches to Aspergers to ADHD, Chronic Fatigue, learning disabilities, personality disorder, and neuromuscular weakness brought on by 3 different episodes in my life which all happen to have exascerbated my neuro problems, or brought about new ones altogether.<br />
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If you are interested in communicating further, I would love to communicate with others like myselfl with rare neuro disorders. Surely we share some of the same experiences, hopes, dreams. I would love to know your interests, hobbies if any, dreams, issues - anything you're interested in discussing, really.

I've had ME since I was 10 years old, and although I fall on the 15-20% range of the spectrum, when I am ill it does affect me quite badly.

I'm convinced its something to do with migraine...have had cf symptoms on and off over 20 years

Thanks for that information! I hadn't heard of myalgic encephalopathy before (although from what you describe, it almost seems a misnomer given the spectrum of symptoms). <br />
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It's good to hear that you don't fall into the most severe end of the spectrum, although it sounds like it has been very disruptive to your life.<br />
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I'm sure that if you feel like doing so, you have a lot to share about what it's like to live with ME, not just in terms of having a condition, but also in terms of the perspectives you've gained into life that might have eluded those of us with different types of lives. I look forward to reading more stories from you, and seeing you about the site! :)

It is a neurological illness that causes multiple symptoms including muscle weakness and spasms, cognitive impairment and memory loss, abnormal lack of stamina and fatiguability (physical and mental), a permanent feeling of having a nasty case of the 'flu, multiple chemical sensitivity and food intolerances, and pain in muscles and joints. The full name is Myalgic encephalopathy. At present it is incureable, but it can be managed if you're lucky. Some people lead a full life and you'd never know they were ill, some people have to be tube fed because they're so ill. As it was only proven to be neurological in 2002 (and classified as such by the WHO), they still don't know a lot about it's causes, though research is ongoing. <br />
Hope that's a help :p

What is M.E.? (Other than a philosophical enquiry of dubious grammatical propriety :D) I'm curious, but suspect I am unlikely to turn up much in google searches for ME ;)