Chronic Fatigue Syndrome/M.E. Society Watch

StandingOnAir
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#21
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#21
(Original post by charla)
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.
I think sometime's it's just good to be able to talk to people when you're having a bad day. It's nice to know that you're not the only person going through it all - and even if people can't offer constructive advice, they can offer support.

(Also, with regards to your earlier post: you're very lucky! As long as you have someone supportive, that's more than lots of people have. My friends would joke, but in the end they stuck by me - and they would often stand up for me when other people in the school had a go. My life would have been hell without them. I wish I could say the same for my teachers - it seems like so many people with ME go through awful things with their schools, who just don't understand it.)

EDIT:
(Original post by Addnightshade13)
im currently fluctuating between 55 and 70 on the functional ability scale. but im still here!
Which scale is this?
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Addnightshade13
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#22
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#22
(Original post by StandingOnAir)
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?
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?
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fredscarecrow
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#23
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There's a possiblity I might suffer from it, but the doctors are totally useless. I'm in anew city now and am going to start raising the issue with them; the doctors at home were just like...'err..we'll do some tests...there's nothing wrong with your blood or your heart so uhh..just try and get more sleep?'
*screams*

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.
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Addnightshade13
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#24
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#24
Which scale is this?
the functional ability scale
more info at:
http://www.ayme.org.uk/article.php?sid=10&id=11

its a self monitoring scale for the ilness to help keep track/ convey your current level of well ness. I think it was developed by cognitive behavioural therapists, its not just used for M.E, its used accross many chronic illnesses and disorders. i found out about it years ago on ayme. and use the scale in things like journal entries so i can keep a track of how i was doing and maybe even work out patterns of behaviour that sets me back.
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Blink.
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#25
(Original post by Addnightshade13)
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!
Ah it's ok, I'm just impatient as it's caused a few too many changes for my liking lol.
Yeah, I've cut lots of junk out too which did help and I go out for walks when I can.

I've heard yoga's good before. I might try that some time

My GP is sending me to the psychiatrist to help with coping and adapting, but I'm slighty skeptical to be honest lol.
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Addnightshade13
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#26
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#26
(Original post by fredscarecrow)
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.
:hugs:
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.
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StandingOnAir
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#27
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(Original post by Addnightshade13)
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?
I have a very limited understanding of societies (never having created one before), but as far as I'm aware, you just need a discussion thread that shows there is significant interest in the topic. As far as I can tell, this thread would do fine (others have already mentioned it comes up in this forum every so often anyway).

I reckon it would also be useful for people like fredscarecrow (with whom I have much sympathy - if your doctor is being useless, try to see a new one!) who have suspicions and would like to know more about the illness.

That scale looks incredibly useful. I'm worried about a post-exam low when I start to relax this week, and while I've tried to journal energy levels before, it's difficult when there's no clear way to link how you're feeling one day to the next. Thank you.
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Addnightshade13
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#28
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#28
(Original post by Blink.)

My GP is sending me to the psychiatrist to help with coping and adapting, but I'm slighty skeptical to be honest lol.
I got through 4 differant psyches before seeing a cognitive behavioural therapists, but TBH i was an awkward lil **** at first. even though it probably wasnt on the best motives ( less he needs help coping, and more he just needs help!) i found it a great help, having some one to talk to. M.E is a really personal illness as in the variety and intensity of symptoms can be unique person to person. and having a psyche that understands the frustration is good
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Addnightshade13
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#29
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#29
im really thrilled that i got such a positive response on this thread. you guys have made my week. ive been feeling particularly 1some lately.ill see what i can do about starting a society. if im successfull ill post the details up here. save peep searching. that cool by u guys?
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fredscarecrow
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#30
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(Original post by Addnightshade13)
:hugs:
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.
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InArduisFouette
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#31
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#31
the biggest problem that is seen with ME/ CFS is the somatisation of the problems and the reluctance ofsufferers to acknowledge even the possibility of a psychological / mental health health aspect to the condition ...
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StandingOnAir
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#32
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(Original post by fredscarecrow)
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.)
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Teao the Cat
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#33
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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 had a friend who had it, well, has it, and spent four years off school, basically going back and repeating the start of lower sixth every year and giving up after two weeks. Shes finally just decided to go to college, and I think shes stuck to it pretty well now!
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fredscarecrow
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#34
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(Original post by StandingOnAir)
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'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'
:shifty:

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:rolleyes: - and they were all the same.
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*Elbereth*
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#35
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Yes. I was diagnosed with this before being finally diagnosed with fibromyalgia in the end.

It's horrible.

What do you find the hardest symptom(s) to deal with? Mine is the brain fog - it really, really does my head in. I don't much like the fatigue and pain either, mind you. But the fogginess, especially when trying to study. Aarghh!

Re: the discussion on the naming: my GP preferred to use the label, CFS rather than M.E. as he doesn't agree with 'encephalo'...doesn't think it is brain-related. :dontknow: However he did say it was post-viral so I guess PVCFS(?) is what he felt more comfortable with. Then changed his mind and diagnosed fibromyalgia after some time.
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FadedJade
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#36
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(Original post by Teao the Cat)
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.
awww that was me! changed my usertitle ages ago though.


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.
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Amykins
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#37
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I've had ME diagnosed for 7 years now but had it at least 10.
Getting diagnosed was a nightmare because there was only one consultant for two counties (now he's retired there is the grand sum total of 0). It took GOSH cardiologists (I have heart problems to) to refer me to him to him after 3+ years of having blood tests every month, plus being on antibiotics literally every month. Got diagnosed straight away by him as I had 95% of the symptoms.
Dropped half my GCSE's, took 4 years to do my alevels (could only manage one a2 + one AS a year, and even that was a struggle), and just dropped out of uni because I've had a huge relapse and dropped down from 70%-30%.
I've never met anyone with ME but I've got some great friends and a brilliant boyfriend who just accept that there are some things that I can't do.
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Addnightshade13
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#38
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#38
(Original post by fredscarecrow)
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'
:shifty:

.
I almost hit a specialist thatgave me the "teenagers sleep alot" malarky, thankfully for him i coudlnt get out of my chair:sigh:
I went to grammar school as well, not to generalise but i believe a trend between sufferers is that many worked in particularly stressfull environments or put their bodys and minds through persistently high levels of stress i.e athletes

trust us on the rest thing, if you have to attend lectures buy a dictaphone to give you the option of taking notes at a later date
I heartily agree with Standing On air, further investigation to hopefully lead to a diagnoses should be persued. even if its just for closure.
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StandingOnAir
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#39
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Although I don't get many symptoms now, I still find I get quite foggy when I do maths - does anyone else find this? During the revision period I ended up taking frequent involuntary naps...


(Original post by fredscarecrow)
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'
:shifty:

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:rolleyes: - and they were all the same.
I hope you have more luck finding a doctor who'll consider an ME diagnosis, then. If you don't, perhaps ask them about it explicitly - there may be a reason all these doctors are ruling out ME. Perhaps the symptoms don't quite match up?

(I would suggest looking into food intolerances, though, as this is something that affects more people than you'd think.)


(Original post by FadedJade)
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.
The paediatrician signed me off when I was 17 because they said there was nothing they could do for me, and I haven't been referred to any other doctors since. One doctor did mention acupuncture, though, and that's the only thing that's helped me.
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Addnightshade13
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#40
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#40
Ive just finished applying for an M.E society here, if it gets accepted it will go up as "All about M.E" society. and its sites this thread as its influence.
And you're terribly lucky to have a sound BF AmyKins, he deserves a beer ( if he drinks lol). us blokes are notorious for being unable to cope with illness in relationships ( unless its us). but its good to see there are some great guys out there.
My wifey n me been together for 3 years now, and it sure as hell hasnt been easy but were getting on. its hard at the moment as im still dragging through the last year of college and shes working! but we are there for each other when it counts and that helps more than i could say.
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