Chronic Fatigue Syndrome/M.E. Society

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.

im currently fluctuating between 55 and 70 on the functional ability scale. but im still here!

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?

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!

I vary from week to week, day to day. Sometimes I'm okay, and can function pretty normally, but other days I can't get out of bed, and randomly in the day I'll pretty much collapse and not be able to stand up. I'm getting worse and worse muscle and joint pain and have just come out of a patch where walking was difficult and very painful =[

It's driving me mad.

Most definately, i seriously thought about starting one, but chickened out as i wasnt sure how to go about it and was persuaded by some not so matey mates that no one would particularly care enough to join!!
needless to say they each got several imaginary kicks to the nuts.

if there were a society for M.E (Sufferers, info? general conversation about the illness)
what do you reckon it should be called?

My GP is sending me to the psychiatrist to help with coping and adapting, but I'm slighty skeptical to be honest lol.

it can be incredibly tough being diagnosed. M.E is most often a diagnoses of exclusion i.e you dont have anything else we can tick off on a list so you probably have M.E.
at one point 5 years ago i was immobalised from the waist down and wheelchair bound. the important thing to remember is that if you are feeling ill regardless of what is wrong (M.E or no) that rest is vital. pushing yourself will make things worse.
if you need to rant feel free to PM me.

That's what my boyfriend keeps telling me =/ but my degree is too important to me. Sometimes I have to miss lectures - I have a ay with three in a row, and frequently I either have to leave by the second one, or my notes just become non-exisant because I can't concentrate/maintain wirting for such a long period midway through. But I just push and push myself through the busy times then out up with the fact that i have to die for about a week in order to reocver a bit =[ It's probably totally unhealthy but I refuse to let it get in the way...
I don't think I have it particularly severly, if I have it at all. Going by that scale, I'd estimate between 70-80%, simply because it states the impact on education.. I mean I have to give more time for me to complete things, than other people would, but I had 7 years at grammar school with only a few days off. My social life was pretty non-existant though because I'd just get home from school and sleep all afternoon/evening.

I just want to know, y'know? Partly because if it's not ME, then I bloody well want/need to find out what it is and if it can be cured.

There are lots of things it could be that aren't ME. Things like glandular fever, problems with your hypothalamus and food intolerances would all cause fatigue, and depression also has similar symptoms. If your doctor suspects you might have ME you're usually tested for all these things and more - do you know if you have been?

If your fatigue is severe enough that it's affecting your education, it needs to be looked at. 70-80% on that scale is high enough that you ought to look into it - you might have it easier than some people, but that doesn't mean you're less worthy of a diagnosis.

(Also, if you do end up getting diagnosed, your uni should be able to support you.)

I can't for the life of me remember her name, although I think I should (sorry if its someone who already posted!!!) but there was someone who had her title thingie that subs get as the 'spoon of thoughtfullness', and i'm pretty sure she was an ME sufferer.

I've had a load of heart scans, blood tested for liver, hypothalamus, diabetes, anemia etc etc. Nothing on food intolerances. They've ruled out depression. My doctors pretty much did the basic tests and then once the hospital ruled my heart clear..they just dropped it. I got told to sleep more [er...] and 'teenagers sleep a lot, you'll grow out of it'


.

I've had a load of heart scans, blood tested for liver, hypothalamus, diabetes, anemia etc etc. Nothing on food intolerances. They've ruled out depression. My doctors pretty much did the basic tests and then once the hospital ruled my heart clear..they just dropped it. I got told to sleep more [er...] and 'teenagers sleep a lot, you'll grow out of it'


Like I sai, I'm going to take it up with my doctor's down here, as the one I've seen for a few other thins seems to be pretty sound. Have to see how it goes though. I've seen three others before - they kept going on maternity leave - and they were all the same.

Do you guys (those who already have a diagnosis) actually ever bother going to see your doctors? I simply don't see the point, given that there's nothing they can do about it.