From Stuff and Things. It’s M.E. Awareness Month in May. We’re supposed to brand ourselves as a congruent whole – patients, loving carers, a few good doctors, and our allies – versus – the system that failed us. But what about the carers that stop caring? Is there a time limit on how […]
By Sophia Komninou in The Conversation. The Conservative Party’s manifesto pledge to replace free school lunches – for children in the first three years of primary school in England – with free breakfasts is curious to say the least. Since it was announced, researchers have found that the cost of the project is hugely […]
Carers Week is a national campaign to celebrate and recognise the UK’s 6.5 million carers who look after family or friends who are older, ill or have a disability. York Carers Centre are committed to helping the city’s estimated 18,000 carers within Carer Friendly Communities; places where local people and services understand a carer’s […]
By Katie Grant in iNews. The Minister for Disabilities was asked in front of an audience to comment in one word – yes or no – on whether she thought it was acceptable that a wheelchair user had had their overnight care axed and that a nappy had been deemed a […]
York community transport Don’t spend your week trapped between four walls! York Wheels Cars or the Dial and Ride Minibus can take you wherever you want to go. Book now by clicking on the link below ! Link to York Wheels
By Tracie White in Stafford Medicine. For three years, Whitney Dafoe’s world has been a darkened room at the end of a hallway in the back of his childhood home. An insidious disease, one with no known cause or cure, has slowly stolen his life from him, turning his body into a […]
From Independent Age. There is a range of benefits for older people. Make sure you claim what you are entitled to. A lot of people miss out on extra money they could be getting each week. It is well worth checking whether you might be entitled to more than you claim at […]
By Jennifer Bolton in The Mighty. We are the forgotten ones. The ones who are housebound. The ones who need help just to sit up. The ones society doesn’t see. We are the ones trapped in our houses and behind closed doors. We are the ones articles don’t talk about but neighbors whisper about. […]
The brand new sixth edition of the Rough Guide to Accessible Britain is now available to view for free via our online reader. It’s packed with over 200 inspiring ideas for fantastic worry-free days out with reviews, hints and tips on some of the UK’s best attractions written by and for disabled people. To […]
Welcome to the February 2017 email update from York Carers Centre. Carers Café The first Carers Café of the year is on Wednesday 1 February, 10 to 11.30am at the Spurriergate Centre, York. Please come along and enjoy a free drink and teacake and an opportunity to meet other carers. You can bring […]
By Mark Brown in The Guardian. he inescapable logic of austerity is looking likely, once again, to reduce people with disabilities to objects – and in doing so to reduce their independence, options and enjoyment of life. According to the Health Service Journal, Freedom of Information (FOI) requests from campaign group Disability United […]
We are pleased to let you know that The York ME Community has linked up with Disabled Access Holidays to add another string to our bow in creating a One Stop Shop for those with a disability needing assistance in the York area. Mike and Lynn Davis started Disabled Access Holidays after their own […]
By Catrin Hedd Jones in The Conversation. We live in a society where care of young and old is increasingly segregated, with very limited opportunity for the two age groups to interact. If we just thought a little more socially, however, these “book end generations” could become great resources for each other – […]
From BT.com News. Airports will provide more support for people with hidden disabilities under new guidelines introduced by the aviation regulator. The Civil Aviation Authority (CAA) guidance sets out how UK airports can make air travel more accessible for people with conditions such as dementia, autism, hearing loss and visual impairment. The guidelines, […]
By John Harris in The Guardian. he 82-year-old man said he wanted to remain anonymous. Then he spent half an hour telling me about the increasing difficulty of his day-to-day life. “I feel helpless,” he said. He lives alone around 40 minutes from London, and has a neurological condition that leads to long spells […]
By Johanna Harris in The Conversation. In today’s society both young and old increasingly find themselves living in a bubble of like-minded and similar-aged peers. This is especially true of university students who leave home at 18 to live with people of the same age – who have quite often had similar […]
By Emma Keef in YorkMix. Thousands of people looking after a disabled, older or seriously-ill loved one in York may be missing out on vital benefits and support. It’s estimated that there are over 18,000 carers in York alone. Carers can find out more about what help and support is available to […]
Join us this Friday 25 November, 9.30 to 11.30 am at Barclays Bank, Parliament Street, York for a special breakfast event for Carers Rights Day. Carers Rights Day is a national awareness day organised by charity Carers UK. The aim of the day is to reach out to the 6.5 million people in […]
Great News ! The York ME Community has linked up with the UK Care Guide as part of its aim to raise ME Awareness and lend support to those with ME, their families and friends within the York area. UK Care Guide is a website that helps to bring together a lot of key […]
From Business Matters. Fewer than 8 per cent of the 7 million UK jobseekers’ CVs posted on Indeed refer to volunteering, even though more than half of people in Britain have done some kind of voluntary work. But candidates’ reluctance about mentioning their voluntary work is at odds with what many employers look for in […]
After a pretty tough time, the guys riding as part of The Nomadic Knights group, have made it to Everest Base Camp. Their brief report is below. 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 peak of Mt Everest is located directly above the left hand corner of the flag with the snow being blown from it, not ideal climbing weather. Directly behind the flag in the valley you can just make out the orange tents, this is the base camp for the mountaineers, their teams and their support crew waiting for windows in the weather to commence their attempt on the summit and move to the next stage camp. Lots of waiting unfortunately.”
17 May 2017.
“We are now at Tingri which is the last stop before Everest Base Camp, the plan is to head to Base Camp early tomorrow morning.
Unfortunately two of our team have been hospitalised with quite serious cases of Altitude Mountain Sickness which can be unpredictable and affect different people in different ways, unfortunately their ride is over and they will be transferred back to Lhasa hopefully within 3/4 days. Naturally the team is extremely disappointed for them, so close to seeing and experiencing Everest. Our thoughts and spirits are with them. Today’s photo of the Flag on route was taken at the entrance to Mt Qomolangma National Park at an elevation of 5248 mtrs which is the highest we should be going. “Qomolangma” is the Tibetans name for Everest. In 2012 this area was awarded the National Park status, it is the highest national park in the world and covers 78000 sq kms. It holds 5 peaks over 8000 mtrs – Mt Qomolangma (Everest), Mt Shishapangma, Mt Chi Oya, Mt Lhotse and Mt Mhakalho.
The park is a holy land for scientists, mountaineers, tourists and pilgrims.
13 May 2017. ME Awareness Flag Update from the group heading to Everest Base Camp for The York ME Community / Invest in ME !
“Here it is on display inside the Potala Palace in Lhasa, built in 7th century and home of Dali Lamas and the centre of local Tibetan Government. Has over a 1000 rooms. Just after this we were approached by Chinese officials who confiscated the flag, obviously with hindsight westerners openly displaying and photographing a flag inside such a highly politically sensitive area was a bit suspect and ignorance on my part.
Anyways eventually they allowed me to continue with the tour. At the end I went back to try to collect the flag but main entrance was closed, there was me in a ludicrous position of banging my fist on the Dali Lamas main door shouting “hello, hello” anyone home” no one answered, only advice I got from a colleague was “pretend you are planting something and I bet the police come running” not entirely wise.
Anyways found a side entrance and a surprisingly helpful security guard, they confiscated 4x flags that day but couldn’t find mine. Eventually they got it, returned it and wouldn’t accept a tip so all good and faith in human being truly restored.”
More updates to follow as I hear back from the guys !
12 May 2017. Just to let you know that The York ME Community / Invest in ME Flag has reached Lhasa in Tibet, on its way to be raised at Everest Base Camp for ME Awareness ! Future communications might be difficult with the Internet and emails in Tibet being controlled by the Chinese, but hopefully it’ll make it !
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…)
The Coffee Club
Our Coffee Club meets on the third Wednesday of each month for a cuppa and a natter at The Novotel York.
Our next get together is on Wed 19 July at 2 pm. 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 (below), you can of course say you'll be going via the Events area.
ME Awareness At York Explore
Friday 28 July 2017
The York ME Community will have a 'Table' at York Explore Library on 28 July 2017 to inform visitors about ME and raise awareness. Please pop in for a chat if you're in town.
Our Facebook Group
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 on a monthly basis if the beast that is ME allows us ! If you apply to join, please check your Facebook messages, as I tend to get in touch for a quick 'chat' before adding applicants 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.
Congratulations to Bransby Wilson Ltd, the York based Parking Solutions company who have been one of the companies to support The York ME Community this year. One of their teams entered into our Inter Company Fantasy Football League were top on Christmas Day and so received a box of goodies from another of our supporters, Nestle of York, and so a big thank you to them and all the other York businesses taking part and supporting us. Now they've only gone and won the league and The York ME TGA Shield ! Our league is sponsored by TGA Mobility and the shield will be presented in due course.
If your company would like to take part next season, all it takes is a £25 registration fee which goes directly to Invest in ME Research. We make sure all businesses get a good mention in social media with their business Tweets being re-sent to hundreds more potential new clients.
Please get in touch by dropping me an email at bill@York-ME-Community.org to register your interest.
Why not take this opportunity to support your local community and raise the profile of ME Awareness in York, an illness that affects around 800 people in the York area, with 200 being severe, meaning house or bed bound. Tomorrow it could hit you or one of your family, so you could be helping yourself too.........
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 Enecephalomyelitis (ME). This might include the work colleagues you haven't seen in some time, or your friends and family, maybe one of the lads that hasn't turned up for five-a-side for a while.
There is information above to explain how it affects people and ruins lives. These are your neighbours; would you like to help ?
The York ME Community is here to help support those in the area in need whilst raising awareness. Unfortunately, this is hard to do when you have the illness ! I'm looking for more foot soldiers to spread the word. Can I come into your workplace and chat to your HR Staff maybe ? It could be that ME is having an effect in your workplace.
How would you like to take part in our online Inter Company Fantasy Football League in support of Invest in ME Research ? Nestle of York have already donated a prize to the business team that was top of the league at Christmas and there's a trophy to be had at the end of the season. Why not enter a team for next season ?
Is your business taking part in any runs coming up such as The London Marathon, The Great North Run, or maybe something similar ? If you haven't decided on what cause to run for, what about Invest in ME Research ? Any donations can be passed via the Just Giving link at the top of the site, but I'd also be able to advertise your generosity and your business name to thousands across the world via our social media connections.
There are lots of things going on locally to try and raise awareness, but we need your help to help others. Please get in touch. Be a part of your community. The York ME Community. Thanks.
