From the ‘This Thing They Call Recovery’ Blog by Jenny. Sickness is scary, end of. It’s something that you carry with you, you can’t just leave it at home and forget that it’s there. If I’m being honest, my own body scares me a bit. I don’t feel safe in my own skin. Your […]
York Neighbours supports people over the age of 65 living within the City of York in 3 different ways, please see the What Do We Do section for further details. Although we are a church-led initiative we positively welcome people of any or no faith as volunteers and users of our service. Our history We […]
By James Moore in The Independent. Discrimination against disabled people is, in theory, banned in law, even if it’s depressingly common in practice. Unless, that is, you happen to be selling, say, travel insurance. Then the law says, go right ahead. Feel free to put the boot in. If that means people can’t travel, well that’s just […]
By Christina Baltais in #MEAction. When a sudden and unexpected illness catapulted my life into a completely different path, life as I had come to know it, was irrevocably changed. Prior to this, I thrived on the fast paced career trajectory that our Western ableist society promotes, rewards, and idolizes. I was by […]
By Lisa Alioto in The Mighty. The doctor walks into the room and gives me my diagnosis – myalgic encephalomyelitis (ME). Finally, a name (and what a name!) to what has been happening. A sense of relief actually washes over me. Almost a weird sense of elation. Even though I’ve just been told I […]
By Ben Glaze in The Mirror on 21 August 2017. United Nations officials will hear evidence of how British ministers are breaching disabled people’s rights today. The UN’s Committee on the Rights of Persons with Disabilities is investigating the UK’s progress in implementing the UN Convention on the Rights of Disabled People. […]
By Sean Dilley & James Melley in BBC News. Some 800 cases of charity fraud were reported in the UK last year. But with police warning that they represent just a fraction of the number actually taking place, is enough being done to deal with the scammers? Within hours of the Grenfell Tower […]
Pike’s story from Health Rising. The Brown Envelope I recently received the dreaded brown Department of Work and Pensions (DWP) envelope. Fully expecting yet more bad news, I tore open the envelope, ready to rip up the letter and fling it in the bin. The letter informed me that in light of my […]
From Laura’s Pen Blog By Laura Chamberlain. I am a member of several ME support groups on Facebook and it has shocked me on several occasions to see people ask “My doctor/ME clinic have told me not to nap, but I can’t get through the day with out it. How do you […]
By Maria Popova in brainpickings. I had lived thirty good years before enduring my first food poisoning — odds quite fortunate in the grand scheme of things, but miserably unfortunate in the immediate experience of it. I found myself completely incapacitated to erect the pillars of my daily life — too cognitively foggy to […]
By Jordan Baker in The Sunday Telegraph. Every time she went to see Prime Minister Malcolm Turnbull, Federal Liberal MP Lucy Wicks thought it was nerves that left her feverish and stammering. It took her a while to work out it wasn’t her, or even him — it was his office making her […]
By Elizabeth Wright in The Guardian. Returning from Rome after a holiday, my plane taxied to its stand and I waited for all the more ambulatory passengers to disembark. I had wheelchair assistance booked – a much-needed service for someone who, like me, struggles to walk long distances – and the drill […]
By Russell Logan in Shout Out About ME. Leading international me/cfs experts have written a primer for diagnosing and managing the illness in children and adolescents. The new primer lifts the veil on a poorly-recognized disease ravaging our most vulnerable, leaving some children wheelchair dependent, housebound, or bedbound and many more unable […]
From the Blog, puffins&penguins&me I have been wanting to write about The PACE Trial for some time, about the background, the controversy and where we are at today. I have tried, but unlike my usual posts it is very technical, involves a lot of research and there’s a lot to cover. I just don’t […]
“What happened to you, then?” There’s no ideal time to acquire a long-term chronic illness, but becoming disabled halfway through your undergraduate degree has to be up there in the Least Convenient Life Situations list. Adapting to the student experience whilst learning to live with a painful and debilitating neurological condition isn’t a […]
By Cort Johnson in Health Rising. Researchers and doctors get interested in ME/CFS in different ways. Many have a personal connection, but for David Systrom, a pulmonologist, it was all about demand. He didn’t seek chronic fatigue syndrome patients out – quite the contrary. When Systrom was given control of a clinical cardiopulmonary […]
By Isabel Walter in Huffpost. On holiday in the Peak District in June 2007, three months after being diagnosed with ME, I sat down one afternoon with a pile of postcards and discovered I could no longer write. The words were clear in my head, but the pen in my hand made […]
By Jerome Burne For The Daily Mail. Myalgic encephalomyelitis (ME) is a debilitating condition that can leave those affected bedridden for years. It’s linked with as many as 60 symptoms, the most common being a feeling of constant exhaustion — ‘like a dead battery’. The condition first reached mainstream consciousness in the Eighties following […]
By Clare Rudderty in The Mighty. I’m going to tell you something only my husband, parents, sister and one friend know. Why would I share such a secret with thousands of people? Well, I hope having the courage to do so helps some of you know you’re not alone in your experiences. So, […]
By David Tuller, DrPH. On Friday, I had an e-mail exchange with Sir Andrew Dillon, chief executive of the NICE Guidance Executive. The other seven Guidance Executive members are various directors within the NICE hierarchy, including the communications director. This group will make the final decision about whether to accept the provisional decision of a […]
From YorkMix. Want to know where you can find some of the best indepenedent shops and businesses in York? There’s a map for that! Indie York’s new map details more than 100 of the city’s independents, from bars to bookshops, designers to delicatessens. It is now stocked across York, helping both visitors to […]
19 May 2017.
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.
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 20 September 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.
STOP PRESS: There will be a Morning Coffee Club on Monday 4 September at 11.00 am at The Bar Convent on Blossom St,York to provide a chance for those who would like to get together for a natter and a cuppa who can't always make it to the usual afternoon gathering.
Raising ME Awareness At York Explore Library
Friday 28 July 2017
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 it themselves who now know we're here for them.
Thanks to the Anne twins, Mal and Dionne who turned out to man and woman the table, but also to all who were there in spirit and would have been there in body but for a certain little beasty we all know so well......
More to come on York TV........
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 won The York ME TGA Inter Company Fantasy Football League sponsored by TGA Mobility for season 2016/17.
The second season has just got underway ! With the aim of raising ME Awareness, it has attracted 10 business teams, including two from Belfast, up on last year, raising over £400.00 for Invest in ME Research.
Why not put it in your diary to join us next season ? Take the opportunity to support your local community and raise the profile of ME Awareness, an illness that affects around 800 people in the York area alone, 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.........
Hopefully, even more teams from across the country next season.....
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.
