Millions Missing

Tommy missing from the five a sides

A different postman today

Jenny not out, not seen her about

Maybe she’s just gone away

No Mary at the Bingo

Charlie, where is that guy?

Rang the teacher, couldn’t reach her

Didn’t wonder why

Jack from the pub

Hayley down at the club

That barber’s missing too

What’s going on, where have they gone?

……Well let me explain to you…..

There are Millions Missing from their lives

Fathers, brothers, sisters, wives

Children who can’t get to school

Hit by an illness that’s so very cruel

A devastating hammer blow

To everyone who’s come to know

How so life changing it can be

To be struck down with this beast, ME

It doesn’t really care about who

So next, it could so easily be you

Your life being just left to dangle

Above this medical Bermuda Triangle

Where those of all ages disappear

Those you hold so very dear

A medical disgrace that this is allowed

I hope those in power are really proud

So many laid in their prison bed

Struck down in pain, from toe to head

Blackened windows to shield from light

No relief through day or night

But these Missing Millions still have a voice

And they will continue to make a noise

Though to label us activists is quite ironic

When our illness is so extremely chronic

To get to where we need to be

We have no adopted celebrity

No TV star, no magic elves

We have to take this on ourselves

So in countries all across the world

Flags and banners will be unfurled

Pairs of shoes sadly on display

For the Millions Missing every day.

Bill Clayton

If you have an ME related event you would like advertised here, just let me know.

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Sun 28 Apr 2019 - The York Inset Scooter Club will be setting off on their annual Mods and Rockers Charity Ride Out from Clifford's Tower in York to the coast in aid of The York ME Community. Departure time is 10.30 am. Why not come a long to wave them off with us ?

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Mon 6 May 2019 at 11 am - The York ME Community Coffee Club at Bar Convent, 17 Blossom Street, York.

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6 - 12 May 2019 #Missing Millions Events around the country.

For Birmingham, on Friday 10 May, 12 noon to 4pm, at St Philip's Cathedral.

For Leeds, on 11 May, full details can be found by clicking on the link below:

Link to Missing Millions Event in Leeds

For Bristol, 11 May, contact : BristolMissingMillions@gmail.com.

For Liverpool 11 May, contact ask@alishawitham.com

For Norwich 11 May, 11.00 am by McDonald's and NEXT.

For Durham, 11 May, 11.30 am to 3 pm in Durham City Market Place. Info at: www.menortheast.org

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12 May 2019 (but may be for the week around that date)

Clifford's Tower and city walls in York will be lit in blue for ME Awareness.

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To get involved in Nottingham on 12 May, contact: meshnottingham@gmail.com.

For Southampton on 12 May, MillionsMissingSouthampton@gmail.com.

For Glasgow 12 May, starts at 2 pm at George Square.

For London 12 May, starts at 12.30 pm, ends 2.30 pm, St John's, Waterloo Road, SE1 8TY.

For Hebden Bridge on 12 May, starts at 12.00 pm.

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Wed 15 May 2019 - at 2 pm - The York ME Community Coffee Club at Novotel York.

Sunday 19 May 2019 - #22 - Riga (Latvia)

Mike Harley's EU Marathons for Invest in ME Research

Link to Mike's Website For More Information

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31 May 2019 - Invest In ME Research Conferences, London.

This annual international, CPD accredited research conference provides a platform for the latest and most promising biomedical research into ME.
IIMEC14 will be the fourteenth conference and regularly attracts researchers, clinicians, doctors, nurses, occupational therapists, healthcare professionals and patient groups twenty countries from around the world.
The conference is a full day event from 09.00 to 17.30.

For up to date information, click on the link below:

Link to Invest In ME Research Conferences Information

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Weekly - Every Wed, 8 pm - 9 pm on Twitter, ME Awareness Hour using the #MEAwarenesshour hashtag.

Would you like to help your local community ?

By current research, there are around 800 people in the York area suffering from Myalgic Encephalomyelitis (ME). This might include the work colleagues you haven't seen in some time, or your friends and family, maybe one of the lads who hasn't turned up for five-a-side for a while.

There's information at the top of this site to explain how it affects people and ruins lives. These are your neighbours; would you like to help ? To read the rest of this request, click on the link below:

Link to Business Request

The social element of this site is via a Facebook Group called The York ME Community.

This is available to people in the York area looking for help, advice and support, whether those diagnosed, family or friends. We are a close knit group who discuss more than just ME, as we like to think that we are not defined by this illness. We discuss every day things, have a laugh, and try to meet via our Coffee Club if the beast that is ME allows us ! If you apply to join, please check your Facebook messages, as there are a couple of automated questions to be answered before being welcomed to the group.

Please don't apply to join if you are promoting your preferred remedy. I'm happy to mention your company within the group, but it's for individuals to choose what they wish to try in their battle to seek an improvement in their health.

After a pretty tough time, the guys riding as part of The Nomadic Knights group, made it to Everest Base Camp. I hope we can use this story to gain interest from media sources to help raise awareness for us all. It's the least the guys deserve for all their efforts.

19 May 2017.

“Very pleased to report that we reached Mt Qomolangma (Everest) Base Camp with the ME Awareness Flag at 1528hrs on Thursday 18th May. Three and a half hours after we had planned but time in Tibet can sometimes be very fluid. The base camp is located at 5200m, walking to the final destination was challenging in itself due to low oxygen levels.

Conditions at base camp were extremely windy (good for flag flying) with intermittent clouds with no particular destination in mind and the sun was not ideal for photos."

The Jen Brea ME film 'Unrest', about her story and struggle with Myalgic Encephalomyelitis (ME) was shown to a sellout audience at City Screen York on 1st November, prompting a second showing on 16 November. This film has won awards at The Sundance Film Festival and is a must see for all wishing and needing to know more about an illness affecting over 800 people in the York area alone.

Although still showing around the UK and worldwide, it's now also available on Amazon and iTunes and through the Unrest UK Store on DVD and Blu-Ray by clicking on this link: Unrest site to save having to undertake a journey to the cinema.,

Please spread the word through your GP, MP, Company HR Teams and any other people of influence you may know. Thank you.

Welcome to Broken Puppet Theatre Company.

We are a small team of creative professionals who live with chronic illness and invisible disabilities. We work with theatre, film and puppetry to support children, families, schools and communities who are learning to share their world with chronic illness and invisible disabilities too. Our aim is to provide creative expression and escapism wherever they are needed.

"Everything Broken has a Story..."

To visit the site, just click here

Upon request, North Yorkshire Fire & Rescue Service can carry out a home fire safety visit to your home, completely free of charge. This visit involves fire service staff coming to your home to give you advice on fire safety in the home, actions you can take to reduce the risk of fire, and discuss escape routes should fire occur.

If you don't aim to take up this offer, please at least check the batteries on your smoke alarms on a regular basis. If you want to read more, click on the link below:

Link to North Yorkshire Fire Brigade Site

York, United Kingdom

12^°C haze

tue04/23 wed04/24 thu04/25 fri04/26 sat04/27

12/7^°C

14/9^°C

11/7^°C

14/6^°C

12/7^°C

The York Inset Scooter Club is based in York (UK) and has a membership of around 250.

They are a thriving, active club and look to support local charities when they can. They have an annual Mods and Rockers charity ride out, and for 2019 have agreed to support The York ME Community.

They will head off from The York Eye (Clifford’s Tower) on Sun 28 Apr on a run out to the coast, and be set off by the Mayor of York and the York Normandy Veterans. They aim to depart at 10.30 am. Why not come along and wave them off with us ?

All money raised will be used to raise the profile of ME in York through posters being produced and put up in local business premises, clubs, schools, GP Surgeries and venues. The picture shows the club gathering before last year’s Charity Ride Out. More details will be given nearer the time, and will be highlighted on this site.

Good luck to all Company teams as we get into the business end of the 2018/19 season !

Last season was a great success with 15 teams involved, and this season is going brilliantly with the aim of spreading ME Awareness. As a bonus, we have also raised £725.00 for Invest in ME Research.

Let's see if NG Plumbing and Heating can hold onto the trophy, having won the league for season 2017/18, although Bransby Wilson were top at Christmas and so received a box of goodies kindly donated by Nestle of York.

This is a call out to all York Businesses, Clubs and Venues to put it in your diaries for next season and support your local ME Community.

To join in for next season and help raise ME Awareness in your local area, have a look at the tab at the top of the site for more information.

Our Coffee Club meets twice a month for a cuppa and a natter.

Dates and times will always be shown in our diary at the top left of this site.

The Coffee Club is open to anyone either with ME, or friends and family looking for support from people who understand.

Due to the nature of the illness, there will be times when numbers are low, but if you'd like to attend, either just turn up on the day, or email me at bill@York-ME-Community.org. If you're a member of our Facebook Group, you can of course say you'll be going via the notice in the Events area.

Euan’s Guide is the disabled access review website used by disabled people to review, share and discover accessible places to visit. The charity was founded in 2013 by Euan MacDonald, who is a powerchair user, and his sister Kiki. As Euan’s access requirements changed, both went in search of recommendations for accessible places to go, but a platform for this kind of information didn’t exist. Built as a friendly and honest alternative to hours of web searching and phone calls before visiting somewhere new, Euan’s Guide now has thousands of disabled access reviews and listings for places all over the UK and beyond.

To go to Euan's Website, click on the link below:

Link to Euan's Guide

A TRUE STORY BY JESSICA TAYLOR-BEARMAN

Book Description: From a darkened world, bound by four walls, a young woman called Jessica tells the tale of her battle against the M.E Monster. The severest form of a neuro immune disease called Myalgic Encephalomyelitis went to war with her at just 15 years old. From beneath her dark glasses, Jessica glimpses a world far different from the one she remembers as a teenage school girl. This true story follows her path as she ends up living in hospital for years with tubes keeping her alive.

This harrowing story follows the highs and lows of the disease and being hospitalised, captured through her voice activated technology diary called `Bug' that enables her to fulfil her dream of one day becoming an author.

It provides a raw, real-time honesty to the story that would be impossible to capture in hindsight.

To order the book through Jessica's site, click on the link below:

Link to Jessica's site

This book is also now available at York Library

An album of original songs and poetry composed and performed by people with M.E. from all over the world, was released to mark and support ME Awareness Day, 12 May 2018.

It was hoped that by releasing this album, it will help those with ME to know that they are not alone, and for others to understand the nature of this illness and give what support they can.

Please consider downloading the album, or even a couple of tracks to help raise awareness of ME, and much needed funds for research into this illness that affects so many, but is understood by so few who may be in positions to help. Proceeds to ME Research and Education. All further information and questions, please direct via the website below: The album can be downloaded now from:

www.music4me.net

PLEASE SPREAD THE WORD !

I had a very productive meeting with Cllr Aspden and Cllr Runciman of City of York Council where they have stated they will back efforts to raise awareness of ME, understanding that much more is needed to increase understanding of this debilitating disorder, in York and across the UK.

The motion put before Council with regard to support in raising ME Awareness in York was passed unanimously !

The City of York Council followed through on their promise by lighting up the city walls and Clifford's Tower in blue over ME Awareness Week.

Financial Year	£
2014-15	280,442
2015-16	295,626
2016-17	130,958

Links To Our Supporters Websites

Just A Few ME Events For Your Diary

If you have an ME related event you would like advertised here, just let me know.

Calling On All York Businesses !

By The Way, The York ME Community Can Also Be Found On Facebook !

Money Saving Tips And Discounts For Disabled People

MP Speaks Of Need For Government Funding For ME Research

Interview With Dr David Tuller DrPH, of Berkeley University & Link to Blogs

The Nomadic Knights Reach Everest Base Camp For ME Awareness !

Symptoms Of ME – (Myalgic Encephalomyelitis)

What’s Meant By ‘Invisible Illness’ ?

Wheelchair Friendly Walks In The Outdoor Guide

The Jen Brea ME Film ‘Unrest’ Now Available On Amazon And iTunes !

CFS and ME Comparison Chart

Citizens Advice York

The Broken Puppet Theatre Company

"Everything Broken has a Story..."

Helpfulpeeps….People Looking To Help You….Or Looking For Help…

York Samaritans

Fire Safety In The Home

Twitter News

AccessAble In York

The York Inset Scooter Club To Support The York ME Community

The York ME TGA Shield – Inter Company Fantasy Football League

Good luck to all Company teams as we get into the business end of the 2018/19 season !

Let's see if NG Plumbing and Heating can hold onto the trophy, having won the league for season 2017/18, although Bransby Wilson were top at Christmas and so received a box of goodies kindly donated by Nestle of York.

Why Not Come Along To The York ME Community Coffee Club This Month ?

Euan’s Guide – The Disabled Access Review Website

Raising Money For Invest In ME Research…At No Cost To You !

UK Government Funding Into Myalgic Encephalomyelitis Research By Year

A Girl Behind Dark Glasses

The Music4ME Project – Album Available For Download Now !

City Of York Council Backs The York ME Community In Raising ME Awareness !

Calling All York Sports And Fitness Clubs, We Need Your Help !

We’ve Been Raising ME Awareness At York Explore Library !

Featured Article On The ME Story By Nathalie Wright Of The Independent

#MEAwarenesshour

Mike Harley’s EU Marathons For ME

What Does Myalgic Encephalomyelitis (ME) Actually Mean Anyway ?

Carers And Disability Benefits Guide

Sally Duffin

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