How My Life Has Changed Since I Developed ME/CFS

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.

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The third Wednesday of each month  -  at 2 pm - The York ME Community Coffee Club at The Novotel,  York.

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

Access Your Life is a site run by Felix and Lauren, with a little input from Fliss, the dog!

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

The site is full of great information that I feel will benefit many within The York ME Community and beyond.

To go to Access Your Life, click on the link below:

Link to Access Your Life

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.

Some companies and organisations offer discounts for disabled people and their carers – click on the link below to find out what you could save.

Link to Saving Tips

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

Anil's interview gives a great insight to the man and his ME mission !

Link to Anil van der Zee's Interview

Having read the above interview, I'd recommend a visit to David's Blog below:

Link to all ME Articles on David Tuller's Virology Blog

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."

Debbie North, our TOG wheelchair walk designer uses an off-road mobility scooter, also called an all terrain hopper to access the countryside and wants to inspire other wheelchair users to do the same through her wheel friendly walks.

Wheelchair friendly walks are a selection of walks that the TOG team have carefully selected for families using pushchairs, wheelchairs or bicycles.

Link to Debbie's Walks

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.

One of the major questions raised is the blending of ME with CFS. This chart on the Hummingbirds site illustrates the many differences between Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME).

Link to Chart at Hummingbirds

For confidential and independent advice for everyone on welfare benefits, debt, housing, employment, consumer rights and much more.

Click Here For Citizens Advice In York

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

Helpfulpeeps is a platform that allows people in any given area to ask for and offer help to one another.  Although this is a nationwide facility, by adding your street name, the system automatically drops a pin on that location and you only see posts from a 20 mile radius. You have the option to narrow or widen this radius.  I hope this is a useful facility for members of our Community.

Click Here For The Helpfulpeeps Site

If you're given the time and space to talk things through, you can find a way through your problems.

Samaritans help you to explore your options so you can make decisions that are right for you.

Click here for more information at York Samaritans

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

Calling all Companies wanting to enter teams into the league in time for the 2019/20 season, you've missed the boat and will now have to wait till next season !

Last season was a great success with loads of local company teams involved, and this season promises to be even better.  With the aim of spreading ME Awareness, as a bonus, we have also raised around £800.00 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, and were also top at Christmas and so received a box of goodies kindly donated by Nestle of York.

This is a call out to all York (and beyond) Businesses, Clubs and Venues to join us for next season and support your local ME Community.

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.

The aim of this group is to bring together everyone in York with a need for a little help in getting out and about in our beautiful city.

This includes those who use, or are thinking about using any type of mobility aid, from a simple walking stick, to a wheelchair or mobility scooter. This is where we can share advice, ideas and support on all things mobility, including any ideas that might help us around the house, or out and about.

It will also be where we can raise concerns of accessibility issues in York, and maybe create a strong enough voice to effect the changes needed to help us be a full part in what’s going on and live a fuller life.
We can share names of accessible shops, cafes and venues, as well as those that need to improve if they want to get our custom.
If you know of someone who might like to be a part of this group, please let them know, and let’s all join in with ideas, suggestions and support to those who might need it.

Let’s make York a better place for all of us.

To read the ME Research Summary 2019 by ME Action covering the last ten years, click on the link below:

ME Research Summary

There is a great need for the training of those with a Duty of Care to those with Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS).  For those in Healthcare, Education or Business with this Duty of Care, this E-Learning Course is the one for you.

To learn more, click on the link below:

Link to Stripey Lightbulb CIC

AccessAble in York provides information on Shopmobility, Talking Signs, Dial & Ride, York Wheels and accessible Hotels, Restaurants, Public Toilets and a whole lot more in our city.  To find out more before setting off for York, click on the link below:

Link to AccessAble

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

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.

Help us raise money for The York ME Community to pass onto Invest in ME Research every time you shop online, and it doesn't cost you a penny !

By using the link below, when you shop online with a huge number of shops, they will pass a percentage of your purchase cost to our fund.  THIS MONEY IS DONATED BY THE RETAILERS, NOT YOU !

Link to Go Raise

Written Question to the Department of Health and Social Care on 22 May 2018 by Carol Monaghan SNP, answered by  Caroline Dinenage Minister of State (Department of Health and Social Care)

Link to Written Question In Full

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.

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.

We had a brilliant day at York Explore Library raising ME Awareness.  Lots of interest in what we're doing from local health groups, charities, the council and most heart warmingly, from those dealing with ME themselves who now know we're here for them.

If you'd like to hear more about ME, get in touch.

 Time For Unrest: Why Patients With ME Are Demanding Justice.

If you want the full story on ME and will read just one article about it this year, please make it this one,

Link to Nathalie Wright's Article

 Are you on Twitter?  Learn more about ME every Wednesday, 8 pm - 9 pm (UK) using #MEAwarenesshour

Mike Harley is a very special guy who's running a marathon in each EU country to raise awareness and funds for Invest in ME Research.  Please visit his site to learn more.

Link To Mike Harley's Site

To go to the Government's Disability Benefits Advice Guide, click on the link below:

Link to Disability Benefits Guide