Why I Think ‘Chronic Fatigue Syndrome’ Is The Worst Name Ever

7th June 2019

Chronic Fatigue Syndrome, Disability, Invisible / Chronic Illness, ME Blogs, ME Support and Awareness in York - The York ME Community, ME Symptoms, ME Treatments And Therapies, ME/CFS Information, Medical General, Myalgic Encephalomyelitis, Personal Stories

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By Adele Paul in The Mighty.

Imagine the following conversation…

Friend: Heard you weren’t feeling well lately?

Me: You could say that.

Friend: So you’re just tired all the time?

Me: Yeah, and a few other things…

Friend: Girl, I hear ya. When I got back from Hawaii in January, it took me a week to turn around and then I made the mistake of going on a bender the weekend after. You know how that goes, and then last week I ended up with a flu and it feels like it’s been a month since I felt normal, you know?

Me: I can relate to that.

Friend: I remember last year there was like this three-week period where I couldn’t sleep past 5 a.m.
Man, I was so bagged at work. You don’t even know…

Me: Yeah, that sucks, but it’s a bit different.

Friend: How so?

To read the rest of this story, click on the link below:

Link to Chronic Fatigue Syndrome story

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

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.

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

York, United Kingdom

9^°C scattered clouds

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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

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

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

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

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

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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

Calling On All York Businesses !

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

Remembrance Isn’t Just For November – It’s For Every Day Of The Year – We Will Remember Them

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

Money Saving Tips And Discounts For Disabled People

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

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..."

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

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

The York Access and Mobility Club

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 !

A Girl Behind Dark Glasses

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

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

#MEAwarenesshour

Mike Harley’s EU Marathons For ME

What Does Myalgic Encephalomyelitis (ME) Actually Mean Anyway ?

Carers And Disability Benefits Guide

Fire Safety In The Home

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