By Taylor-Bearman in jaytay.co.uk. The most asked question of my book was how could I write it through the brain fog and illness? So I have decided that I need to explain myself, once and for all! What was really interesting about the book is most of it was written in the four year time […]
From YorkMix. A York park will have a new café this summer, run by a city youth organisation. Choose2Youth has been chosen to run the Hull Road Park café. It will be launched in temporary cabins that have been installed on the old bowling green on Alcuin Avenue, off Hull Road. They plan to […]
By David Tuller, DrPH. It’s been almost a year since the CDC removed its recommendations for GET and CBT as treatments for ME/CFS (or CFS, or ME, or CFS/ME, or even SEID or whatever else one calls this illness or cluster of illnesses). When questioned about the decision, the agency explained that people had […]
From Which ? Consumer Rights. The General Data Protection Regulation (GDPR) strengthens your personal data rights, including the way companies handle your data and redress for misuse of that data. What is GDPR and how will it affect me? On 25 May 2018 a massive change in the way companies must handle data, […]
By Carlton Boyce in SAGA Magazine. I have been an avid member of eBay for the past 14 years and a customer of Amazon for almost as long. Both have transformed the way I shop – and probably not in a good way if you happen to be a local retailer with a […]
From HPCarr.com. Millions of people around the world are trying to understand what is ME / CFS. It is a life-limiting condition that can affect anyone – dancers, athletes, Doctors, successful movie stars, the young and old. Imagine waking up tomorrow and suddenly your body isn’t working. You can’t walk, talk, or think clearly. Your […]
By Gordon Port in The Conversation. The warm, still weather of May is great for us and for many plants and animals, but some of these creatures are a nuisance. Around this time every year in many parts of the northern hemisphere, people begin complaining about a plague of tiny green insects filling […]
By Jo Cole in HUFFPOST. If you see a person who you know has a chronic health condition out and about it’s probably because they’re having a ‘better’ day When I bumped into a former colleague who told me I was looking well I had mixed emotions. I don’t want to seem ungrateful […]
By John Siddle, PR Manager, ME Association. A devastating disease that some experts insist is all in the mind led to the death of a young drama student, a landmark inquest today ruled. Merryn Crofts, 21, weighed less than six stone and had spent the last three years of her life totally bed-bound […]
By John Pring in Disability News Service. Imposing benefit sanctions on disabled people is counter-productive, ineffective and “probably too dangerous”, a trio of experts have told MPs. The Commons work and pensions committee also heard that the failure of the Department for Work and Pensions (DWP) to research the impact of its sanctions […]
From Brigham and Women’s Hospital in Science News. A study published this week in Nature sheds new light on the connection between the gut and the brain, untangling the complex interplay that allows the byproducts of microorganisms living in the gut to influence the progression of neurodegenerative diseases. Investigators from Brigham and Women’s Hospital (BWH) have […]
From Minster FM News. The York street entertainer Purpleman is planning a tribute the victims of the Manchester Arena bombing which claimed the lives of a Mum and Dad from the city. He will stay out all night as part of a 22-hour marathon on Stonegate in their honour. It comes as York Minster […]
From Spoonsekkerdotcom. Sorry I’ve not been blogging recently. I put the blog to one side to concentrate on another project but I didn’t realise how long it would take. Needing to take breaks every five minutes to replenish my brain when I’m writing doesn’t make for speedy progress. Today, however, it has been […]
From The Mighty. My name is Lauren Childs and I am the founder and organizer of the “All About M.E. Knitathon.” I live in the west midlands in England, UK. I wanted to create an awareness project which was going to be eye-catching and a way in which the ME/CFS forgotten individuals from […]
By Victoria Reay in The Conversation. The NHS is going digital. Slowly. After spending billions of pounds on IT projects of variable success, the aim is now for the NHS to be largely paperless by 2023. There is no doubt that the NHS needs to digitise its paper records, and it needs to link up the […]
By Jo Moss in The Mighty. I find hypersensitivity one of the hardest myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) symptoms to cope with as it can be so isolating. Hypersensitivity comes in many forms: hypersensitivity to light, touch, noise, smells, foods, medication, chemicals, heat, cold and irritants like pollen and dust. All of these […]
By KentOnline reporter in Lynn News. An Upwell teenager has spoken out about her fight with a debilitating illness that has left her on daily medication and with no energy. Annie Fowler, 15, has ME (Myalgic Encephalomyelitis) a chronic fluctuating neurological condition which affects around 20,000 young people in the UK. She is sharing […]
From YorkMix. A competition has been launched to see which York pub can transform its beer garden into the best blooming oasis in the city. Bloom! – the brand-new, four-day horticultural festival – has teamed up with YorkMix to launch the hunt for York’s Best Blooming Beer Garden 2018. The idea couldn’t be simpler. Any pub […]
By Melissa Bailey in stuff.co.nz. OPINION: This week is M.E (Myalgic Encephalomyelitis) awareness week. M.E. is a multi-system disease, affecting not only the neurological system but also the immune, musculoskeletal, endocrine and cardiovascular systems. It is a neuro immune disease that is in desperate need of research and a cure. Millions of people are affected […]
By Adam Behr in The Conversation. In 1985, the best selling song in the UK was Jennifer Rush’s The Power of Love. Thirty years later, it was Uptown Funk, by Mark Ronson, featuring Bruno Mars. From soft-rock power ballad to dance track, these were two very different chart toppers. It’s obviously difficult to […]
The Invest in ME Research Biomedical Research into ME (BRMEC) Colloquiums are research meetings organised by the charity to encourage biomedical research into ME and international collaboration amongst researchers. This has been one of the main objectives of the charity. Invest in ME Research began arranging biomedical research conferences in our first year and have continued them […]
By Corina Duyn in The Journal. We have all heard the news that yet again the HSE and the government are letting the ill people, especially women, of Ireland down. One illness that rarely receives the attention of the press, the HSE and the government, is called ME. ME ME (or Myalgic Encephalomyelitis) is classified […]
By Megan Klenke in The Mighty. I’ve been struggling with writing a lot lately. Who am I kidding, I’ve been struggling with everything lately. I feel this need when I write and a lot of the time in person (basically anytime I’m talking to anyone outside of my family, my boyfriend and my best friend who is […]
From STV News. (Although written prior to ME Awareness Day on 12 May, this article still has an important message.) Scotland’s only nurse specialising in myalgic encephalomyelitis (ME) has called for urgent change to help improve the lives of at least 20,000 Scots affected by the condition. NHS Fife’s Keith Anderson said […]
From YorkMix. They are a part of York entertainment history – and now they have been saved from the wrecking ball. This row of 180-year-old stone arches once adorned York Theatre Royal – but they have been at 79 Fulford Road since the theatre was remodelled in 1879. Despite their history, a developer […]
From the ‘A Ship Of My Own Making’ blog. ME/CFS can’t be prevented, we all know that. But do we? Certainly it isn’t something that medical professionals talk about, or ME/CFS advocacy and patient support groups, and equally certainly there is no proven method of prevention. I, personally, don’t believe that that means […]
By Dan Flinn in The Conversation. The jobcentre. It used to be a staple of the British high street, where the unemployed went to sign on and look for work. But Britain’s national network of jobcentres is currently undergoing radical change as the government implements multiple welfare reforms and cuts as part of its continued […]
By Carmel Breen in The Irish Times. Imagine: you slip gently into the Land of Nod as a high-drive, progressive, active, healthy person only to awaken to an unexpected, uninvited invader. Under the cloak of darkness, it has stealthily and rapidly colonised your world, rendering you a useless, frustrated spectator in the brutish […]
30 - 31st May - The Invest in ME Research Biomedical Research into ME Colloquium 8 (BRMEC8) will take place in London over two days. For more information, click on the link below:
Fri 1 Jun - Invest in ME Research International ME Conference, London. Our local York MP's have been sent details. For more information, click on the link below:
Mon 4 June at 11 am - Coffee Club at Bar Convent, 17 Blossom St, York.
Wed 20 June at 2 pm - Coffee Club, Novotel York.
Weekly - Every Wed, 8 pm - 9 pm on Twitter, ME Awareness Hour using the #MEAwarenesshour hashtag.
Carol Monaghan SNP spoke in Parliament about the PACE Trial and how it effects those with ME. Click on the link below to watch the full debate:
Looking after your Accessibility Holiday needs with escorted coach tours with qualified care teams. To find out more, click on the link below:
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:
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:
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.
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).
For confidential and independent advice for everyone on welfare benefits, debt, housing, employment, consumer rights and much more.
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.
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.
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:
This is a call out to all York Businesses, Clubs and Venues to sign up for the new Fantasy Football season and support your local ME Community.
To join in for the 2018/19 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.
An album of original songs and poetry composed and performed by people with M.E. from all over the world, has been released to mark and support ME Awareness Day, 12 May 2018.
It’s 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 !
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.
Are you a member of a York based Sports or Fitness Club ? Looking for a local cause to run or do an activity for ? The York ME Community are looking to be 'adopted' by anyone willing to maybe run for us and help raise our profile. There are around 800 people of all ages in the York area who would be so very grateful for your help.
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.
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.
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 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.
To go to the Government's Disability Benefits Advice Guide, click on the link below:
DisabledGo in York provides information on Shopmobility, Talking Signs, Dial & Ride, York Wheels and accessible Public Toilets in our city. To find out more before setting off for York, click on the link below:
To make sure you know the best place to go in order to get the most suitable treatment this winter, click on the link below:
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.
This annual international CPD accredited research conference at One Great George Street, London provides a platform for the latest and most promising biomedical research into ME, and will be attended by researchers, clinicians, doctors, nurses, occupational therapists, healthcare professionals and patient groups from twenty countries around the world and is open to all.
To read more about this conference, click on the link below:
FEATURED ARTICLE
By
Sally Duffin
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…)