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To ask those who don't know how bad M.E is to watch this?

(23 Posts)
Pictureperfect Sat 15-Sep-12 19:47:25

www.youtube.com/watch?v=VH-puNCQxh4&feature=youtube_gdata_player

This short video is made by a friend I met in hospital, she spent years in hospital (from her teen years) not going home once. She is 21, not been out of bed for years and has the bones of a 100 year old lady.

I done old like people to know M.E (sometimes known as chronic fatigue syndrome) is 
!neurological
!affects children as young as 2
!leaves people paralysed and tube fed
people even die of it (my wonderful friend Emily died this year from it, you can read about Emily here http://www.telegraph.co.uk/health/3692639/I-had-three-years-of-nothingness-of-hell.html

I've been in bed for 10 years (since just before my 17th birthday) yet some think myself, Jessica, Emily and all the others shut away in bedrooms and hospitals are just tired, depressed or worse still attention seeking.

I wish for the world to wake up to M.E and you can help do just that by watching Jessica's video

Pictureperfect Sat 15-Sep-12 19:48:44

* I would like, not I done old!

MyLastDuchess Sat 15-Sep-12 20:00:59

Horrible, horrible. I haven't watched the video as partner is sleeping next to me, but I had (relatively, extremely mild) ME for two years and it was a nightmare. I cannot even contemplate what it must be like for people like you.

BlackberryIce Sat 15-Sep-12 20:03:35

I'm sure I've seen that same video linked here before, recently iirc

It's awful isn't it!?

CuriousMama Sat 15-Sep-12 20:04:54

My friend's dd has just found out she has it, she's 16 sad She shakes with it too I didn't know that happened?

So sorry for you and your friends op.

pickledparsnip Sat 15-Sep-12 20:10:34

Don't think I can watch it. My sister has had ME since her early teens (now late 20s). It's an utter bastard of an illness.

Well done for trying to raise awareness.

Pictureperfect Sat 15-Sep-12 20:10:47

Hi curiousmama, I'm sorry to hear about your friends daughter, not everyone becomes severely affected and some recover within a year or two (which feels like a life time I know). Does your friend know about the charities AYME and Tymes Trust? I found they really helped me when I was a teen.

thebeesnees79 Sat 15-Sep-12 20:11:34

my sister has it & has suffered around 12 years. its very debilitating and she has had so many negative comments, most from people thinking its all in her head!

CuriousMama Sat 15-Sep-12 20:15:17

Thanks Pictureperfect I'll tell her.

A few other friends have it, 2 have fibro as well. One friend who's in her 50s has M.E. and can end up in bed for days, with incontinece too. Some days she feels ok and is up and about. It's awful.

FushiaFernica Sat 15-Sep-12 20:15:24

http://www.mumsnet.com/Talk/_chat/1550459-My-very-brave-friend-made-this-incredible-video

Is it the same video as on this thread?

kim147 Sat 15-Sep-12 20:16:29

Message withdrawn at poster's request.

FushiaFernica Sat 15-Sep-12 20:17:56

www.mumsnet.com/Talk/_chat/1550459-My-very-brave-friend-made-this-incredible-video

Very sad

CFSKate Sat 15-Sep-12 20:59:04

I'd like to recommend investinme.org/ as people who are trying to change the situation. They are trying to set up a research centre in the UK. see blog.ldifme.org/

also voicesfromtheshadowsfilm.co.uk/ and for the severely affected 25megroup.org/

People can die of ME. I think Emily Collingridge was about 31, Sophia Mirza was 32, Alison Hunter was 19, and I've read of a teenager dying last year, and a few more people in their 30s quite recently.

There is hardly any funding for research. It affects about 240000 in the UK, IIRC.

Saltire Sat 15-Sep-12 21:01:41

It is a horible illness. I have Fibro so can realte in a way to how you feel OP. There are days when I feel fine then days (weeks even) where I feela wful. I have pain of some sort 24/7 and horrible fatigue.

catwoo Sat 15-Sep-12 21:07:01

A friend of mine whio has researched ME thinks its increase coincided with the end of bed rest being prescribed after nasty viral illnesses.

Pictureperfect Sat 15-Sep-12 21:16:23

Voices from the shadows is brilliant, cfskate I've lost 3 friends to ME now, Emily was one of my closest friends (and who supported me so much despite what she went through).

Catwoo there are so many different causes, mine is quite to opersite to your friends (and so many others start the same way mine did), I got glandular fever and instead of resting after a while I was pushed back into school for fear of getting behind, going undiagnosed meant I kept pushing myself which lead to becoming severe.

Thank you everyone for nice replies, was expecting someone to throw the usual ME insults!

Mumblepot26 Sat 15-Sep-12 22:26:00

Had indirect experience of ME for last 19 months when my DH was suspected of having it. In the end it turned out to be severe anxiety and treated with anti- depressants. When we did think thats what he had we did lots of research and looked in to something called the lightening process, which claims to have a very high success rate. I know there is controversy around it and I can't claim any direct experience of it, but just thought I would mention it, might be worth looking in to. My thoughts are with you.

whatthewhatthebleep Sat 15-Sep-12 22:45:03

I had glandular fever and didn't know it for a while. I was so drained and emotional about everything, dragging myself into work and just couldn't do it suddenly.
I was in nursing at that time doing 12hour shifts and overtime often. I was unable to work for years after being eventually Dx with Chronic Fatigue and depression.
I lost most of my 30's, my relationship and friends too. My home was re-possessed by the bank and I had many debts through not being able to maintain anything.
I am recovered to a large degree but have to be careful with pacing myself and have relapses and have never felt free of it or ever 100%.
I haven't met many others like myself and think it is a very hidden illness in many ways

It's all about planning and careful management for me but even this doesn't stop things getting really difficult at times.
I am very thankful that I have never been bedridden by it though and my heart is with anyone who has been. I fear this ever happening to me
(((HUGS TO ALL)))

Hopeforever Sun 16-Sep-12 07:48:30

I too got ME after having glandular fever. I was nursing and had the injection for Hep B. I went down hill very fast after that but kept pushing myself, nursing my grandmother at home as she died of cancer using up my annual leave and straight back to work just 48 hours after she died.

Looking back I can't understand why I pushed myself so hard. I got better after 8 years but 4 years ago the ME came back. Learning the lessons now.

I think catwoo is saying that bed rest is good OP, so agreeing with you

Thumbwitch Sun 16-Sep-12 08:09:09

I have an elderly relative who had ME back in the late 60s/70s, not quite as bad as the young girl in this film clip but enough to confine her to bed most of the time. It took years for her to improve her health and even now, many years later, she still has to be careful not to wear herself out. This is her book about that time - it may be sneered at by some because she found a form of spiritual healing that helped her to recover - but it may be helpful to some as well.

I also have friends who have had it in various degrees of awfulness - one had it after a dose of labyrinthitis (a fairly common precursor viral infection) and another after something similar to glandular fever that she caught in the Dominican Republic (wasn't Epstein Barr virus but had a similar effect) - and others whose initial cause I don't know.

One girl I know found that megadoses of vitamin C helped her. Others don't find that but may find help in other nutritional ways. Yet others may get no help from nutritional changes at all.

thebeesnees79 Mon 17-Sep-12 20:34:09

my sisters was caused through glandular fever. Lucky for me I had glandular fever in December and was diagnosed really quick so rested lots and now I am fine. although I did get caught pregnant a few days before my results came in lol.
It made me have more severe morning sickness and fatigue, the first 3 months were unbearable.

Parachutes Wed 26-Sep-12 19:14:54

Hello, I second the Voices from the Shadows book and video: both are harrowing but brilliant ways of explaining how awful this illness is. 
My son has been ill with ME for six years now. He had glandular fever and chickenpox more or less together. 
We found that The Association of Young People with ME (AYME) very much backed the NHS CBT/GET course of "treatment" but that made things worse. The Young ME Sufferers Trust (TYMES Trust) were the only ones to actually help us get the advice and support we needed. 
It's very difficult to deal with the medical profession as they mostly believe that it's a psychological problem. I know of many families that are referred to social services when their children don't get better on the "treatment" they're given. Horrific stuff. 

CFSKate Thu 27-Sep-12 10:06:12

"My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube." — Emily Collingridge.

We desperately need funding for research. e.g. We need further trials of Rituxan
www.youtube.com/watch?v=ZBCXKIRBQ-s it is arthritis medicine and it really helped two thirds of ME patients in a small trial, results were published last year and presented at Invest in ME conference investinme.org/.

thekafkapandemic.blogspot.ca/2012/09/politics-and-rage.html

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