Meaw

[Nyx]

No i havent gone nuts and think im a cat.

I would like to bring to your attention ME Awareness Week 2008.

The campaign runs from 11th May - 17th May

For those of you that dont know ME is characterised by severe, Disabling physical and mental fatigue, both of which are exacerbated by relatively small amounts of activity, something as simple of getting washed may take hours.

This is often accompanied by other symptoms including severe pain – muscular, rheumatic or neuropathic, severe headaches sleep disturbance, sore throat, enlarged gland, erratic temperature control, sensitivity to sound, light and smell, cognitive impairment.

In some cases young people may be bed bound in a darkened room being tube fed for long periods at a time.

It is estimated that 25,000 young people (5 yrs old – 25 yrs old) suffer from ME in the UK at any time.

ME is very misunderstood, people see it as people just getting “tired”. As you can see from above the reality of ME is very different to how people see it.



AYME is a fantastic organisation that’s helps and supports young people with ME.
I am a member of AYME as last year I was diagnosed with ME. I am a SAM (severely affected member) and it s huge help to have AYME to give advice on how to cope a little better.



The point of MEAW is to educate people on the dramatic effect ME has on peoples lifes. As a suffer i now know how important this is.




AYME is soley kept running by donations. It is a web, phone and mail based. Some great people work there at the end of the phone whenever you need some help or a friendly ear for the suffer and theirs cares, parents and partners, as it is also very tough on them.




Please pass this information to anyone possible as its about time people understood ME for what it really is.

Thank you for taking the time to read this. If you feel like being kind and have a spare few quid dontaions would be gratefully received. PM if you`d like to make a donation to help with the running costs of AYME.

 

[jug]

i share my office with a guy who has ME, we always say "its all about ME ME ME". he gets to go home early every day, what a skive.

there is no way to prove someone has it, so anyone can be diagnosed with it. all they have to do is go to the docs and say they have the symptoms.

 

[Nyx]

Lucky for him he can actually get up and go to work.

Its more than i can do.

See that is the typical way people see it. Come live with me for a day or a child that suffers from it... see what you say then

 

[jug]

it has a reputaiton as a lazy man's excuse to avoid work, but that is only because so many lazy gits pretend to have ME so they can stay in bed all day. once people find out that there is a disease like ME and no way to prove if you have it there is a huge potential for abuse.

 

[Captain Mike]

it has a reputaiton as a lazy man's excuse to avoid work, but that is only because so many lazy gits pretend to have ME so they can stay in bed all day. once people find out that there is a disease like ME and no way to prove if you have it there is a huge potential for abuse.

Ricky Gervais talks about it in his Fame tour but i cant find a link

 

[bludvl_x19]

What does AE stand for?

Michael

 

[Nyx]

would you abuse a disabled person? cos thats what im classes as.

Yeah people might "pretend" but there are so many of us out there that dont!

Do you have any idea how upsetting it is to read/hear what youve said when you have battled for the past 6+ months with it.

If you have nothing nice to say, dont bother postiong please, this is a serious thread about a serious illness!!

 

[Captain Mike]

What does AE stand for?

Michael

accident and Emergency

 

[bludvl_x19]

I thought that was A&E? Im confused now.

Michael

 

[jug]

would you abuse a disabled person? cos thats what im classes as.

Yeah people might "pretend" but there are so many of us out there that dont!

Do you have any idea how upsetting it is to read/hear what youve said when you have battled for the past 6+ months with it.

If you have nothing nice to say, dont bother postiong please, this is a serious thread about a serious illness!!

i wasnt accusing you personally, i was simply pointing out some well known facts about ME.

 

[Nyx]

if you mean what does ME stand for it Myalgic Encephalopathy

 

[Nyx]

i wasnt accusing you personally, i was simply pointing out some well known facts about ME.

Yes and the point of MEAW is to get people to understand ME, the poeple that really have it not pretend, so please keep your negative, unhelpful, and upsetting remarks to yourself

 

[bludvl_x19]

if you mean what does ME stand for it Myalgic Encephalopathy

Whoops, typo. ME sounds pretty crap to have, I think that I may have gone to school with someone who had it, she was rarely there, and would sometimes leave for no apparent reason.

I hope this weeks goes well.

Michael

 

[Chas Uno]

Jug does have a point. ME is only diagnosed via symptoms - symptoms that the sufferer tells a specialist. There is no physical test (i.e. blood test/ gene identification/ known change in the body pathophysiology etc.), so it can be open to abuse. What's to stop anyone just going to their doctors and saying they are tired all the time and have no energy, when in actual fact they're just lazy and don't want to do anything?

I have a friend who has had ME since 2003. Prior to that I was sceptical about it, moreso as it first came to light in the late 80's as "yuppie flu". It seemed to be linked to life 'burn out' from living life to excess and self induced stress.

Back to my friend, prior to getting ME he was always on the go, up for anything, full of plans and ambitions and was a real go-getter. Then in the summer of 2002 he contracted glandular fever, a viral infection that can give very similar symptoms to ME and can take up to six months to subside. No treatment is available and the body normally deals with it via its own immune system. It is also strongly linked to people who then go on to develop ME.

However, 6 months passed and he still suffered from symptoms of tiredness and exhaustion despite being very inactive. He had loads of blood tests done to check for conditions like anaemia but everything came back negative. A year after contracting glandular fever he was diagnosed with ME.

He is very fed up and has tried everything he can to find a cure. He's read books, articles, treatments, tried special diets, alternative therapies etc. etc. He also sees a 'specialist', though from what he tells me they aren't much help. At the end of the day he has a condition that nobody can tell him exactly what it is nor whether he'll ever be rid of it. He feels his life is on hold and being wasted and he is unable to work or support himself. For someone who was previously very independant that was crushing blow to him.

Therefore I have no doubt that the condition of ME exists. WHAT it is and WHY it happens is another matter entirely, and until an identifying physiological cause can be found it will always be open to mis-diagnosis, abuse and scepticism. I will also add that if my friend's experience is anything to go by then the so called specialists are totally neglecting to examine any possible psychological issues. Even if psychological issues don't cause ME, ME can certainly cause psychological issues for those that feel imprisoned in a body that won't function correctly. Not once has he really been supported psychologically or had any form of counselling.

Hopefully the cause will be identified one day and those afflicted with it can be given treatment.

 

[maddogmorg]

recently signed up to AYME the t'other day. i've been diagnosed with ME and the last 6months or so i haven't been able to work. i've had to give up uni and subsequently got a huge debt with nothing to show for it. i've been crap since getting glandular fever back in 2004. though at the moment i've been really bad since october?

it really is one of the worst things to have it makes you feel absolutely worthless as you can't do anything. i forget things that have happened as my mind has seemed to of slowly transformed into a rather small vegetable. if i do anything much i then end up spending the next few days in bed.

pretty much all my friends have gone on to uni and left weston. alcohol intolerant as i was told by the dr the other day but i had sort of already guessed. hmmmm theres loads more but like i say i have a vegetable for a brain at the moment.

but then looking into it i'm very lucky! as i can still do things though at the moment i am unable to do something for more than 2 hours at a time. as Nyx says those severely affected need to be looked after and are unable to leave their beds.

currently there is no real treatment for ME. the only real thing is to live your life around it. there is a trial called the pace trial http://www.pacetrial.org/ though this only considers four different approaches, and i'm a little cynical of some of their approaches and yet to make up my mind as to whether i would be able to take part.

possibly the worst bit though is the constant "it's all in your head" argument and the fact that it is sometimes classed as a psychological problem. if it is a psychological problem i should be locked up in a padded cell. its not me being lazy, or avoiding things and i miss out on things i really want to do. and if its my mind turning my life into what it is what else is it capable of?

 

[Nyx]

Sorry to hear that Besbie. Are you signed up in members area?

The thing that really bugs me is people think ME is just being tired.

Yes tiredness is part of it, but nothing like the tiredness " normal" people feel.

Correct there is no way to "prove" you have ME, it is normally "brought on" by being unwell or having a shock to your system.

Uno, there is no cure for ME, in some cases you can fully recover.

Doctors arent thick, they know the difference between someone pretending to be tired and someone who has ME.

Anyone who pretends to have it is sick in the head. Why would anyone pretend.

I had to be cared for by my mum and partner, i can do little things for myself now but cant over do it.

On a day to day basis this is what i have to deal with:

Extreme tiredness, even when ive just woke up
Sickness ( 90% of the day)
Muscle pain - not jus sore, like someone is tearing your muscle from your bones, even with pain relief it still hurts so bad my partner cant hug me without hurting me.
Sensitive to noise
Sore throat - feeling like you swallowed razor blades everyday isnt much fun.
Server depression - medicated and under the mental health team.
Boiling hot or freezing cold from one sec to the next.
Unable to sleep at night.
My mind lets me down alot, forgetting things, Knowing what i wat to say, but unable to get my words out.

Thats just a few, but you get the idea.

I had all this before i even knew what ME was, i didnt look it up or read anything about it for a long time as i was to scared.

Yes there ARE lazy people then there ARE people with ME, people need to see the differece

Thankfully i have the best doc in the world and he has helped me sooo much in all this.

 

[jug]

Doctors arent thick, they know the difference between someone pretending to be tired and someone who has ME.

i've tricked doctors before, its actually very easy because they dont question you. you say how you feel, they wirte it down, job done no more questions asked. its as easy as pretending to have whiplash to get a compo claim.

Anyone who pretends to have it is sick in the head. Why would anyone pretend.

people pretend to have it so they dont have to go to work and can claim incapacity benefit (you get at least £170 a week for telling one lie to a doctor). the only reason ME is so often used as an excsue is that it is impossible to prove if you have it. similarly stress and depression is abused a lot because no one can prove you are not depressed.

i dont know why you find my comments hurtful, i'm not suggesting you are a faker or that ME does not exist.

 

[Nyx]

A good GP asks questions.

I had to keep diarys over a ferw months to say how i felt and what pain i had each day, he didnt at first say what he thought it was. Not till the diarys came back for him to see.

Incapsity benifit is not £170 a week lol Be very nice if it was.

I just find your general attitude towards the subject unpleasant.

 

[Captain Mike]

A good GP asks questions.

I had to keep diarys over a ferw months to say how i felt and what pain i had each day, he didnt at first say what he thought it was. Not till the diarys came back for him to see.

Incapsity benifit is not £170 a week lol Be very nice if it was.

I just find your general attitude towards the subject unpleasant.

what stops you lying in the diary though?

not saying you did but what stops others lying?

 

[Nyx]

what stops you lying in the diary though?

not saying you did but what stops others lying?

True, but if they dont give you an idea of what they think it is, how do you know what to lie about?

Plus you can get called to see a doc thats picked by DWP, im sure its harder to lie your way round them as they deal with liars daily.

I just dont understand why someone would pretend to be ill