I know some of you regard yourselves as Techno Luddites but do any of you use Twitter ? Have family or friends who use Twitter ? As you will know, my big aim is to raise Awareness of ME. Belief will follow, then the funds to cure this beast. Part of what I […]
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.
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 ?
Mon 6 May 2019 at 11 am - The York ME Community Coffee Club at Bar Convent, 17 Blossom Street, York.
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:
For Bristol, 11 May, contact : BristolMissingMillions@gmail.com.
For Liverpool 11 May, contact email@example.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
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.
To get involved in Nottingham on 12 May, contact: firstname.lastname@example.org.
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.
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
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:
Weekly - Every Wed, 8 pm - 9 pm on Twitter, ME Awareness Hour using the #MEAwarenesshour hashtag.
Calling On All York Businesses !
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:
By The Way, The York ME Community Can Also Be Found On Facebook !
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.
Money Saving Tips And Discounts For Disabled People
Some companies and organisations offer discounts for disabled people and their carers – click on the link below to find out what you could save.
MP Speaks Of Need For Government Funding For ME Research
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.
STOP PRESS: FULL DEBATE TO BE HELD IN PARLIAMENT ON THURSDAY 24TH JANUARY 2019
Interview With Dr David Tuller DrPH, of Berkeley University & Link to Blogs
Anil's interview gives a great insight to the man and his ME mission !
Having read the above interview, I'd recommend a visit to David's Blog below:
The Nomadic Knights Reach Everest Base Camp For ME Awareness !
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."
Symptoms Of ME – (Myalgic Encephalomyelitis)
What’s Meant By ‘Invisible Illness’ ?
Wheelchair Friendly Walks In The Outdoor Guide
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.
The Jen Brea ME Film ‘Unrest’ Now Available On Amazon And iTunes !
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.
CFS and ME Comparison Chart
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).
Citizens Advice York
For confidential and independent advice for everyone on welfare benefits, debt, housing, employment, consumer rights and much more.
The Broken Puppet Theatre Company
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..."
Helpfulpeeps….People Looking To Help You….Or Looking For Help…
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.
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.
Fire Safety In The Home
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:
AccessAble In York
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:
The York Inset Scooter Club To Support The York ME Community
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.
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 !
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.
Why Not Come Along To The York ME Community Coffee Club This Month ?
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 – The Disabled Access Review Website
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:
Raising Money For Invest In ME Research…At No Cost To You !
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 !
UK Government Funding Into Myalgic Encephalomyelitis Research By Year
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)
A Girl Behind Dark Glasses
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:
This book is also now available at York Library
The Music4ME Project – Album Available For Download Now !
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:
PLEASE SPREAD THE WORD !
City Of York Council Backs The York ME Community In Raising ME Awareness !
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.
Calling All York Sports And Fitness Clubs, We Need Your Help !
We’ve Been Raising ME Awareness At York Explore Library !
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.
Featured Article On The ME Story By Nathalie Wright Of The Independent
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,
Are you on Twitter? Learn more about ME every Wednesday, 8 pm - 9 pm (UK) using #MEAwarenesshour
Mike Harley’s EU Marathons For ME
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.
What Does Myalgic Encephalomyelitis (ME) Actually Mean Anyway ?
Carers And Disability Benefits Guide
To go to the Government's Disability Benefits Advice Guide, click on the link below:
Hello to all the members of York ME Community. I’m Sally, a Naturopathic Nutritional Therapist at ‘Nutrition in York’ and Bill has asked me to share some nutritional therapy approaches for managing ME.
Many nutritional therapists – myself included – are trained in the Functional Medicine approach to healthcare which means we are less concerned with the name of a condition (ME, CFS etc.) and more interested in the underlying cause and contributing factors of the condition. (more…)
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