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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The first Monday of each month at 11 am - The York ME Community Coffee Club at Bar Convent, 17 Blossom Street, York. There is parking available just around the corner at Nunnery Lane Car Park. Blue Badge holders can park for free.

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The third Wednesday of each month - at 2 pm - The York ME Community Coffee Club at The Novotel, York. Parking is free at the hotel.

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

IIMEC15

The 15^th Invest in ME Research International ME Conference 2020 - IIMEC15 - will take place on 30^th May 2020 in London.

15 years of researchers, clinicians and patients interacting.

More details of the conference day will be announced in the coming months. It will be preceded by the 10^th Invest in ME Research International Biomedical Research into ME Colloquium - BRMEC10 - a two day closed researchers' meeting with researchers from around the word, and the third year of a full day Thinking the Future - Young/ECR Conference for young and early career investigators.

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

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 aim is to share ideas in promoting various disability services, whilst continuing to raise Awareness of ME through both organisations. Through their #Think Access group and our own group, The York Access and Mobility Club, we will be looking at accessibility issues in the York & Harrogate areas, with the aim of advising on suggestions for change.

Disability Action Yorkshire aim to find solutions for disabled people whatever their aspirations. Whether you are a disabled person or support someone who is, they are here to support you. They provide a range of services, from training to accommodation and help with independence, among others. To find out more about Disability Action Yorkshire, click on the link below:

Disability Action Yorkshire

As we all know, especially those who need Wheelchairs or Mobility Scooters to get around, vehicles parking on pavements and blocking our way can have a major effect on our lives. It can mean that we are likely to put ourselves in danger by going onto busy roads because of inconsiderate parking.

If you live in Fulford York, the details of your local PCSO are below, and he should be contacted in the first instance. If he is not on duty, you may be dealt with by whoever is on duty. If you live in other areas of York, ring 101 and ask for the PCSO covering your area. In all cases, you will be required to give as much information about the vehicle and location as possible. You will NOT need to stay by the vehicle till the police arrive.

Simon Hall

PCSO 5648

North NPT

NORTH YORKSHIRE POLICE

Dial 101, press option 2 and ask for him by his full name or collar number

If using his collar number please state each number individually

Carol Monaghan SNP spoke in Westminster Hall about the need for support and funds for ME Research. Many other MP's spoke passionately on the subject as it affects their constituents UK wide. Click on the link below to watch the full debate.

Link To Parliament Debate

There has since been an All Party Parliamentary Group (APPG) formed to discuss the way ahead in helping MP's Constituents with ME. Contact your MP to ensure they're representing you !

York, United Kingdom

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The Changing Places Consortium launched its campaign in 2006 on behalf of the over 1/4 of a million people who cannot use standard accessible toilets. This includes people with profound and multiple learning disabilities, motor neurone disease, multiple sclerosis, cerebral palsy, as well as older people.

To use the toilet in safety and comfort, many people need to be able to access a Changing Places, which have more space and the right equipment, including a height adjustable changing bench and a hoist.

To find out more, click on the link below to go to the Changing Places website.

Link to Changing Places Website

Calling all Organisations wishing to enter teams into the league in time for the 2020/21 season, it's not too early to let me know !

This is open to any business, club, pub, or organisation looking to have a bit of fun whilst supporting your local community. Our 4th season is well under way and going great guns ! Although the aim is spreading ME Awareness, as a bonus we have also raised over £920.00 for Invest in ME Research, so why not join us ?

Let's see if Bransby Wilson can hold onto the trophy having won the league for season 2018/19. As an added incentive, the team top at Christmas receives a box of goodies kindly donated by Nestle of York. This year, as it's been won by The York ME Community team, it'll be on its way to a local food bank.

To join in for next season, click on the tab at the top of the site for more information, or just to register your interest through the email address supplied.

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 supported The York ME Community.

They headed off from The York Eye (Clifford’s Tower) on Sun 28 Apr on a run out to the coast, set off by the Mayor of York and the York Normandy Veterans.

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.

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

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. I will be aiming to keep up the pressure to ensure future support.

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

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

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

Links To Our Supporters Websites

Apply For A Blue Badge – City Of York Council

Just A Few ME Events For Your Diary

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

IIMEC15

A Call Out To All York Businesses !

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

The Nomadic Knights Reach Everest Base Camp For ME Awareness !

The York ME Community has linked up with Disability Action Yorkshire

Reporting Pavement Parking In York

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

Access Your Life

“Sharing real life impartial reviews, so together we can help people living with a disability improve their quality of life.”

MP Speaks Of Need For Government Funding For ME Research & All Party Parliamentary Group (APPG) On ME

Wheelchair Friendly Walks In The Outdoor Guide

The Jen Brea ME Film ‘Unrest’

CFS and ME Comparison Chart

Citizens Advice York

Tags

Posts By Topics

Carers And Disability Benefits Guide

What Does Myalgic Encephalomyelitis (ME) Actually Mean Anyway ?

Mike Harley’s EU Marathons For ME

Twitter News

Changing Places

The York Access and Mobility Club

Some Useful Phone Numbers

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

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

A Girl Behind Dark Glasses

The York ME TGA Shield – Inter Company Fantasy Football League

Calling all Organisations wishing to enter teams into the league in time for the 2020/21 season, it's not too early to let me know !

ME Research Summary 2019

UK Government Funding Into Myalgic Encephalomyelitis Research By Year

E-Learning Courses For Businesses With A Duty Of Care For Those With ME And CFS

AccessAble In York

The York Inset Scooter Club Ride Out To Support The York ME Community

Euan’s Guide – The Disabled Access Review Website

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

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

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