Wednesday, 25 May 2016

The #MillionsMissing. Read it and weep.

#MissingMillions is a social media campaign
to raise awareness of the estimated millions of people who are missing from society
because there is so little funding into ME/CFS research.

Current NICE guidelines recommend graded exercise therapy.
At worst this has caused disability.
At best it has set patients back months, sometimes years.

Our personal experience of this was when our son Ryan was diagnosed with
Chronic Fatigue Syndrome in 2009.
He was 13 at the time.

Thankfully we found a Dr and physio who understood the illness.
18 months later he was fully recovered,
after doing the very opposite of current NICE guidelines.

He's now 22 and just completed a degree in Sports Coaching & Science.
The irony isn't lost on us.

ME is not a popular illness.

Don't misunderstand me,
no illness is popular.

But ME was christened 'yuppy flu' in the 80's.
I've heard it called the 'Pull yourself together disease'.

Can you imagine how that feels to someone who is in so much pain
they can't lift their head off the pillow,
put one leg in front of the other,
or open the curtains because the effect of the light is too much for their eyes?

When 'normal' noise can feel like a sounding gong or clanging cymbal.

When your brain is so foggy you can't string a sentence together.

Remember how lepers used to have to go underground?

They shut themselves away from society who were afraid of infection.

#MissingMillions is for the millions who have had to,
in effect,
go underground.

They have had to hide away from society because the medical profession has let them down.


The illness has been misunderstood,
and mis-treated,


There are horror stories of children with ME being taken into care
because parents have refused to do what the 'professionals' have recommended.
They knew the long-term effects were huge.
So patients 'go underground' in fear.

Finding a Dr who understands,
or even believes in the illness is like gold dust.
We were one of the lucky ones.

When Ryan was ill he was approaching year 10;
the year he was to start studying for his GCSE's.
At the time we were told CFS was one of the main reasons
for absenteeism in Secondary School.

A more cynical person might think the only reason we were given help
was because the government is so concerned about school attendance figures.
We were given a Dr.
A physio.
And a home tutor for Ryan.

My friend Catherine fell ill after she had left school.
She received nothing.
She still hasn't.

13 years later she is still housebound.
But thanks to her amazing Mum,
who gave me priceless advice when caring for Ryan,
they understand the illness and she is finally making progress.

But I have sat with her Mum, who is also her carer as she shared her more fearful moments.
Her sense of isolation.
Her despair at not knowing what to do next,
and the illness appeared to be winning.
Her amazing, inspiring courage when she stood to fight another day.
Her quiet, unshakeable faith that God had got them,
even though He wasn't answering their prayers as He'd hoped.

My sister was diagnosed a few years ago.
She has three young children.
She had to fight to find a Dr who understood.
But she has found one and receives some helpful treatment.

Today ME patients have sent their shoes to Downing St,
You don't need shoes if you can't leave the house.

Catherine's shoes.

It's a cause close to my heart because I remember so clearly how isolating it is to be a carer for someone with an illness that people don't understand.

The disbelieving looks.

The 'advice'.

I remember how lonely it is to choose not to tell your story because it's just too hard.

How exhausting it is to have to plan a day when everything had to be graded for its intensity;
 and cognitively.

We lived with this illness for 18 months.
Imagine living with it for 10, 15, 20+ years.

Like running a marathon with no idea where the finish line is.

Please pray for the #millionsmissing

They need you.

If you're feeling brave maybe lobby your MP.

If you want to donate, I recommend Invest in ME who are funding research.

Let's stand up for the #missingmillions.

Many of them can't stand up for themselves.....

1 comment:

Anonymous said...

Really well put and explained. Hope everyone you know with ME improve and get better. I'm also an ME sufferer but got it when I was 41 so had years of normal life but still hard now ten years later. I want a cure most of all for all the children and young people. Hoping that Rituxamib maybe an answer. Sally x