By Annie Fields in The Mighty. I thought there would be a time when I would be done with doctors. I was tired – tired of the appointments, the endless blood work, the scheduling, the MRIs, explaining everything over and over. I told myself that before I came back to school I would […]
By Veronique Mead in Chronic Illness Trauma Studies. This post introduces the relationship between chronic fatigue syndrome aka ME/CFS and freeze and similar death-like states such as hibernation. It draws from a 2016 study showing statistically significant objective metabolic changes in ME/CFS and how it is a very real physiological state that is not psychological. […]
By Grace Newton in The Yorkshire Evening Post. It’s official – Ed Sheeran will play two outdoor gigs in Leeds next summer. The pop superstar has announced two dates in Roundhay Park on Friday August 16 and Saturday August 17. Tickets will go on sale on Thursday September 27 at 10 am from […]
By Kate Burridge in The Conversation. A bad start It was a rocky beginning for English spelling. Quite simply, the 23-letter Roman alphabet has never been adequate — even Old English (spoken 450-1150) had 35 or so sounds, and our sound system is now even bigger. More spelling problems came in when French […]
By Laura Denman in The Mighty. Living with chronic illness, especially one involving chronic fatigue, is hard. Often we rely on others for help to do those every day tasks that most people take for granted. We need to take care of ourselves to minimize the effects of our illness and yet, even these […]
From Market Insider. LOS ANGELES, Sept. 20, 2018 /PRNewswire/ — Open Medicine Foundation (OMF), the premier nonprofit organization investing in research to cure myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), sponsors the Second Annual Community Symposium on the Molecular Basis of ME/CFS on September 29, 2018, at Stanford University. This event is expected to draw more than 300 scientists, […]
By Cat Soave in Minster FM. The multi-award-winning festival will run from 21-29 September (excluding 24 and 25) on Parliament Street, York and will feature 28 musicians and bands from across the north of England. The biannual event which hosts a small festival in the spring and a large festival alongside the York […]
By Jo Moss in The Mighty. When you live with an invisible chronic illness there’s a phrase you hear a lot: “You don’t look sick!” It’s so common that many of us don’t even bat an eyelid when these words are uttered. But whether it’s from a well-meaning friend, a doctor or a complete stranger, it’s […]
Hi everyone. I’m sure you will all know of the Jen Brea ME film, ‘Unrest’, and may well have seen it in York or Selby. This is just to let you know that there is to be a further showing in Otley Courthouse Arts Centre on Fri 5 Oct at 7.30 pm. Tickets at […]
From YorkMix. Food, drink, music and family fun are back on the menu as the York Food & Drink Festival returns. The ten days of the festival are packed with fabulous flavours, delicious demonstrations, tasty trails and lots of free samples! Festival director Michael Hjort said: We’re delighted to offer a rather different […]
By Hannah Deal in The Mighty. Have you ever felt unable to put an experience into words? As if the only way to truly get your thoughts across was to write about it? That’s sort of how I’m feeling about life right now. My life looks pretty good from the outside. In the […]
By Frances Ryan in The Guardian. Afflicted has enraged its participants, but it wouldn’t be the first TV show to use people with disabilities as entertainment fodder. An open letter to Netflix was published on Tuesday criticising its recent docu-series, Afflicted, which chronicles the lives of seven people with chronic illnesses. The letter highlighted what it called the […]
By Cort Johnson in Health Rising. “I think some people are angry for good reason. This disease hasn’t gotten enough attention.” Vicky Whittemore My partner and I made our way to Vicky Whittemore’s office in a building off the NIH campus. Security was tight as always. We signed in and were […]
By David Tuller, DrPH. I’ll be in Bristol later this week for the CFS/ME Research Collaborative’s annual conference. I was not welcome last year, since I was at that point engaged in harshly criticizing the organization for its unwillingness to acknowledge that its deputy chair had falsely accused me of libel. This year, things […]
By Kendall Kuzma in The Mighty. I have been unwell for three years now and unable to work for the bulk of that time. Having a chronic illness can create a complex range of challenges for relationships. Everything from guilt and resentment to feeling like one partner is contributing more than the other. Although my husband and […]
By VERONIQUE MEAD, MD, MA in Chronic Illness Trauma Studies. This post introduces the relationship between chronic fatigue syndrome aka ME/CFS and freeze and similar death-like states such as hibernation. You’ll learn how recently identified metabolic changes are regulated by the autonomic nervous system to cause symptoms. And why they are real and not psychological. […]
By Cort Johnson in Health Rising. “The bottom line is that we should rethink this whole area and encourage proper clinical trials.” Dr. Nancy Klimas This article is the last of a three-part series on IVIG which came out of my attending the 2018 Dysautonomia Conference in Nashville, Tennessee. An IVIG Chronic Fatigue […]
Editor’s note: Although this article does not specifically address ME/CFS, Naviaux’s metabolomics study on ME/CFS is clearly related to this theory. Press Release: University of California – San Diego, September 9, 2018. Much of modern Western medicine is based upon the treatment of acute, immediate harm, from physical injury to infections, from broken bones and the common […]
![Jenna_Coleman,_SDCC_2015_by_Gage_Skidmore[1]](http://www.york-me-community.org/wp-content/uploads/2015/10/Jenna_Coleman_SDCC_2015_by_Gage_Skidmore1-150x150.jpg)
From YorkMix. The stars were out in York last weekend as scenes were shot for the smash ITV drama Victoria. Jenna Coleman, playing Queen Victoria, and Laurence Fox as her Foreign Secretary Lord Palmerston, were among a cast dozens strong who took over the Eye of York. York Crown Court was standing in for Dublin […]
By Susan Cole in #MEAcion. ME history was made this week in the historic capital of Scotland when delegates at the Scottish Liberal Democrats autumn conference voted to support conference motion SC5: Investing in ME – Recognition, Research, and Education. So it’s official, the motion, drawn up in consultation with #MEAction Scotland, is […]
From YorkMix. Music superstar Sir Rod Stewart is to play his first ever gig in York. The rock and roll legend will be live in concert at York Racecourse on Saturday June 1 2019. A temporary concert arena will be built specially for for the event next to York Racecourse’s Clocktower Enclosure. It is […]
From The Open Medicine Foundation. OMF Ambassadors support our research efforts and are helping build awareness of ME/CFS and chronic complex diseases worldwide. OMF Ambassadors are promoting our work through videos and messaging on their social media and websites, personal appearances, and face-to-face interactions with their communities and fans. In addition, they are invited […]
By Dr Charles Shepherd – 12 September 2018 Seasonal flu (also known as influenza) is a highly infectious illness caused by several types of flu virus. It spreads rapidly through small infected droplets that are coughed or sneezed into the air by an infected person. Even people with mild or no symptoms can infect other people. […]
By Charlie Middleton in The Conversation. The idea that healthy food costs more than junk food is something I hear a lot. Students tell me they’d like to eat better but can’t afford to. There is a strong belief that cooking from scratch costs a fortune, and with takeaway meals priced as low as […]
By F. Estévez-López et al. • ProHealth.com. Prevalence and incidence of myalgic encephalomyelitis/chronic fatigue syndrome in Europe-the Euro-epiME study from the European network EUROMENE: a protocol for a systematic review Abstract INTRODUCTION: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic disease involving central nervous system and immune system disorders, as well as cardiovascular […]
From Paradigmchange.com. More than 1,000 peer-reviewed articles have been published demonstrating a wide variety of physiological abnormalities in patients with myalgic encephalomyelitis, chronic fatigue syndrome and ME/CFS. To read the citations and a brief description of each article, please click on the topic links below. The full abstract for each article can […]
By Kendall Kuzma in The Mighty. For someone in reasonable health, it can be hard to understand what a loved one is going through if they are struggling with some kind of ongoing health issue. It’s especially tough for everyone if the illness is one which is unseen, as in, no obvious signs of the […]
By Cort Johnson in Health Rising. Without any warning the NIH, in a letter sent to current Chronic Fatigue Syndrome Advisory Committee (CFSAC) members, told them their services were no longer needed. The 15-year experiment that was CFSAC – a panel of ME/CFS experts brought together to advise the federal government on […]
By Felicity Nelson in Medical Republic. NICE’s clinical guidelines still recommend potentially damaging treatments for chronic fatigue syndrome, but they won’t be updated until 2020. The 2007 NICE guidelines currently recommend the use of graded exercise therapy (GET), a treatment that only helps a minority of patients and can cause significant harm in some […]
By Josh Barrie in iNews. A research team has said that foods branded as probiotic, such as yoghurt and milk drinks, have little impact on the body. Foods hailed as ‘probiotic’ have been called mostly ‘useless’ by a team of scientists who have been studying their effects. Researchers at the Weizmann Institute of Science […]
From SAGA Magazine. Do you have cupboards full of old bills and documents? Read our guide to how long you should keep old bank statements, bills and paperwork. Do you feel like you are drowning in documents? Has your home been consumed by seemingly never-ending mountains of old pay slips, bank statements and old […]
By Kerry Regan, in IC News. IC professor Betsy Keller is among the leaders of a comprehensive new study of the misunderstood disease. In the early 2000s, seven decades after chronic fatigue syndrome (CFS) was first recorded by doctors, those who suffered from the disease still struggled to convince the world that something was physically wrong with them. Then as now, the disease — known outside the U.S. as myalgic encephalomyelitis (ME)— had […]
By Carlton Boyce in SAGA Magazine. Smartphones and smartwatches have earned their place in our lives – but could they go one step further and actually save our lives? I’m not a fan of stuff. Stuff clogs your life up and traps you into a never-ending arms race to buy the latest, newest and shiniest […]
From notjusttired.com. This is the second interview of my new blog feature – “Interviews with people living with ME/CFS.” The idea is to interview people living with ME/CFS, and gain an insight into their lives, to help raise awareness and increase understanding of this disease. You can read more about it here. Here is my interview with […]
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Mon 1 Oct at 11 am - Coffee Club at Bar Convent, 17 Blossom St, York.
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Thu 4 Oct 2018 - 7 pm - 9.15 pm
Dr David Tuller will be at The Mourne County Hotel, Belfast Road, Newry, talking on the Government funded PACE Trial.
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Fri 5 Oct 2018 - 7.30 pm
This is just to let you know that there is to be a showing of the Jen Brea ME Film in Otley Courthouse Arts Centre on Fri 5 Oct at 7.30 pm. Tickets at £5.00 are available from the Court House box office or on 01943 467466.
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Wed 17 Oct at 2 pm - Coffee Club, Novotel York.
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Sun 28th Oct 2018 at 1 pm.
Fundraising Zip Slide across the River Tyne. Our 2017 Zippers had an amazing time, why not join us this year and help raise much needed funds for our charity. Only 10 places available so don't hang around! If you are not up for it - what about your friends and family? email jennifer@menortheast.org to book your flight.
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April 2019 (Date tbc) - The York Inset Scooter Club will be setting off on their annual Mods and Rockers Charity Ride Out from York to the coast in aid of The York ME Community.
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Weekly - Every Wed, 8 pm - 9 pm on Twitter, ME Awareness Hour using the #MEAwarenesshour hashtag.
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.
Some companies and organisations offer discounts for disabled people and their carers – click on the link below to find out what you could save.
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.
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:
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 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:
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 !
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)
| Financial Year | £ |
| 2014-15 | 280,442 |
| 2015-16 | 295,626 |
| 2016-17 | 130,958 |
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 help raise ME Awareness in your local area, have a look at the tab at the top of the site for more information.
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
Gary Burgess has produced a great new podcast series, 'The ME Show', covering all things ME. He talkied to researchers, carers, those dealing with ME every day and those who might be able to help going forward.
Just click on the link below to catch up on the series. Hopefully there will be another to follow soon !
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 a run out to the coast, and be 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. 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.
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.
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:
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…)