Monday, 18 April 2011

MEAW (M.E Awareness Week)

Hello :)

So MEAW is coming up (8th - 14th of May) and I thought I would remind you all why it is so important to do something (however big or small)

M.E. is probably still the most misunderstood condition in the UK today. Children and young people with
M.E./CFS face disbelief, stigma, neglect and isolation.

Despite being classified by WHO as a neurological disorder like MS and Parkinson’s Disease, in 1969, and
affecting 250,000 people in the UK, 25,000 being children, there is still no cure, the cause is unknown and
the majority, 75% are unable to obtain suitable care or support.

In M.E. Awareness Week we want young people’s stories to be heard to help members of the
public understand that the world of children and young people with ME/CFS is shattered by this debilitating
and devastating illness.

M.E./CFS threatens the physical, emotional, personal and intellectual development of children and young
people, and disrupts education, social and family life at a particularly vulnerable time of life.

If you would like to do something but not sure what here are a few ideas

1. Sponsored silence, anyone can do this weather you are fully healthy or severely affected with M.E

2. Bake sale, if you are not well enough you could get you're mum, dad or loved one to sale them for you and you could maybe help with some of the cooking

3. Sell card/Jewelry, again if you are severely affected with M.E get someone else to sell them you can just make them

4. Sponsored run, now this one is for the healthy or less affected suffers.

5. Sell some of you're old stuff, this could be clothes, toys, jewelry, dvds etc. Then just give the profits to Ayme

I hope that helped if you can think of anymore ideas let me know

Rachel xx

Information from Ayme

Friday, 15 April 2011

My Story

Hi again,
So I'm going to tell you my story of M.E/CFS, here goes :)

I was first diagnosed with M.E when I was 8 (early year 3) and I started getting the symptoms when I was about 7 (mid to late year 2).

The first symptoms I got were, Stomach pains, lag and arm ace, headaches, fatigue and a few others. Whiten a few months after being diagnosed I got wheelchair bound and stopped going into school. I lost alot of friends, I went from being quite popular to very isolated. I missed most of year 3 and alot of year 4, then I started having home tuition.

I started getting back into school about late year 5 and then managed to walk using crutches, then started to walk properly a couple of months later, that was a huge achievement for me and my family were so pleased.

By the end of year 6 I was in school quite alot of the time and walking all the time. Then when I went into secondary school (year 7) they pushed me to go in full time for two weeks, in them two weeks I made new friends and felt reasonably normal for once. However that didn't last for long, I ended up having a big relapse and went back to having tuition.

Now I'm currently in year 8 and still having tuition, I haven't been in school at all for year 8. I see my friends occasionally, but still wish I could go into school full time and be healthy.

Thank you for reading

Rachel xx


I'm Rachel I'm 13 and from Cambridge. So this blog is basically about living with M.E/CFS so I suppose I should explain what M.E/CFS is shouldn't I?!

What is M.e/CFS?:
ME is a recognised relapsing and remitting medical condition with many complex fluctuating symptoms. Its existence is confirmed in the January 2002 report by the Chief Medical Officer of England and Wales. The report states that ME is: a genuine illness and imposes a substantial burden on the health of the UK population" and is a quite common, very heterogeneous condition of adults and children that lacks specific disease markers but is clinically recognisable."
ME stands for Myalgic Encephalopathy (My-al-jik En-kefa-lop-athy)

The term Myalgic Encephalopathy indicates the pain in the muscles, neurological problems and general suffering that accompany this illness:

Myalgic: Greek origin meaning muscle
Encephalo: Greek origin meaning brain
Pathy: meaning suffering or sickness

There is no known cause of ME as yet, although in young people it most commonly follows persistent viral infection. It is often referred to as Chronic Fatigue Syndrome (CFS) or Post Viral Fatigue Syndrome (PVFS).

Sometimes ME is still referred to by an older version of the name: Myalgic Encephalomyelitis. However, this is technically incorrect because the term 'myelitis' means inflammation of the brain and there is no inflammation found in the brain of ME patients. This was discussed by the doctors involved in the Chief Medical Officer's steering group and they agreed that 'pathy' was a more correct definition.

What are the symptoms?:
There is no predictable pattern to ME/CFS. The profusion of symptoms can be confusing and alarming and symptoms can fluctuate greatly over short periods of time.

Fatigue: Utter exhaustion, often to the point of collapse, totally different from the normal tiredness healthy people experience. Fatigue levels fluctuate over the day and are different from patient to patient. Pallor of the skin may be evident when fatigue is worst. If standing, some patients may need to sit or lie down very quickly wherever they are. Many patients experience post-exertional malaise (the delayed onset of fatigue) after too much activity. Persistent fatigue must be present for a diagnosis to be made but is not always the worst symptom.

Pain: Anywhere in the body but particularly headaches and intense muscle and joint pain, especially in the lower limbs, which is usually difficult to relieve with standard painkillers. Skin sensations such as skin crawling and pins and needles may be felt.

Cognitive impairment: Poor short- and medium-term memory, mental confusion and mental fatigue; the brain seems to run out of steam. Difficulty concentrating, word-finding and thinking. Inability to plan. These symptoms together are commonly called 'brain fog'.

Other symptoms: Body temperature disturbance, dizziness, vertigo, postural hypotension, sensitivity to light and noise. Possibility of sleep disturbance, nausea, loss of appetite, gastrointestinal disturbance, mood swings, panic and anxiety, acquired sensitivity to food, medication, alcohol and chemicals.

What is M.E like?

I can't walk straight and my balance is dreadful.
It's like a giant hoover has come down out of the sky and sucked out all my energy.
My energy is used up so quickly, even on simple tasks like sitting up, or getting dressed.

On bad days it can be hard work just lifting a spoon to your mouth.
Words come out all wrong and you forget what you're saying in the middle of a sentence.
I can't concentrate on any kind of reading, writing, or watching television for more than ten minutes.

My legs ache continuously; the muscles twitch and jump. I start off walking quite well but soon my legs grow heavier until they can't straighten under my weight.
All my senses are hypersensitive. And noise is painful and bright lights hurt my eyes.
I sleep all day and am awake all night. I try to sleep, but the inside of my head just goes round and round.

Even on the hottest day I feel cold, especially my hands and feet. They tingle and sometimes I can't feel my fingers.

What do children and young people with M.E have to do to manage their illness?

The patient has to find his or her limitations. They try a very small activity for 10 or 15 minutes, then rest. In severe cases of M.E, 'activity' can mean simply sitting up in bed or having a short conversation.
I tried to push myself and do a lot more than I was really capable of. It was a natural reaction for me, but now I realise that it wasn't brave. If you do that, you end up feeling worse than when you started. I then learned to pace myself and tried to avoid the urge to complete a task in one sitting. I alternated small mental tasks with small physical ones because I soon learned that it was as important to rest my brain as it was my body.

I hope this has been useful and you now understand what M.E/CFS
Thank you for reading

Rachel xx

Information from