By Jo Moss in A Journey Through The Fog. We all know the anxiety inducing feeling of the dreaded brown envelope falling on your door mat. Being assessed, or reassessed for health and disability benefits, is both exhausting and scary. We are often made to feel we are faking it or exaggerating our symptoms. […]
By David Tuller, DrPH I have written many posts about BMJ Open’s 2011 school absence study, which reported that school absence records could be useful in identifying children with chronic fatigue syndrome. However, for reasons not yet adequately explained, the investigators exempted the study from ethical review on the grounds that it qualified as “service […]
By Tanveer Mann in Metro. Today is Purple Tuesday – and no, it’s not yet another day for crazy shoppers trying to bag a bargain. It’s actually pretty serious and is the first of its kind aimed at highlighting some of the challenges disabled people face while shopping. The national day was founded […]
By Natasha Hinde in Huffpost. Almost one in five people in the UK are disabled. That adds up to 12 million people with a collective spending power of £249 billion, yet neither the high street nor individual retailers are catering to them. “We are an untapped market and at a time when the high […]
By Lucy Middleton in the Metro. A mother with a disabled daughter is fighting for stores and restaurants to not ‘jump the gun’ when it comes to banning single use plastic straws. Karen Grimwade’s daughter Lucy, 15, was diagnosed with severe Myalgic Encephalomyelitis (ME) in 2015 and cannot drink without a straw. But […]
By Lesley Dobson in SAGA Magazine. When Gill Wing suffered a couple of unexplained falls, she discovered a surprising cause, which could have proved fatal. Falling over on my way to work was the first sign of carbon monoxide poisoning – although I didn’t know it then. I’d taken my usual route and […]
By Jennie Spotila, For the Inquirer. I recently went to a new doctor. He looked over my chart: “Chronic fatigue syndrome,” he read, and then he glanced up at me. “You don’t look tired,” he quipped. “There, I made it go away.” I’ve been sick for 24 years, and I get comments like […]
By Jessica Taylor-Bearman. My escapades with the change of drugs reached fever pitch three weeks ago, when I rang up the doctors with a blood pressure of 80/50….The dearest junior doctor had told me or more like made me promise that if my blood pressure went under 90/60, that I’d ring for an […]
From Forces.net. A series of events will take place up and down the UK for the centenary of the Armistice. Millions of people will fall silent this weekend to mark 100 years since the end of the First World War. A series of events will take place up and down the UK for […]
By ME Foggy Dog in Innovate My School. Founder of ME Foggy Dog, ME advocate and ME sufferer. I have raised over £10k for ME research since 2014, and am now in the process of setting up a social enterprise that will offer ME training to healthcare, business and education professionals. I don’t ‘do’ […]
By David Tuller, DrPH. Below is an exchange between members of the Australian ME/CFS community and Professor Michael Sharpe. The open letter from patients and advocates was prompted by a tweet this week from Professor Sharpe that many considered offensive. He has since deleted it. This post includes the initial tweet as well as […]
By Cort Johnson in Health Rising. “New data collectively supports the presence of specific critical points in the muscle that are affected by free radicals.” Fulle et. al. A group of pioneering Italian researchers have been studying the muscles of people with ME/CFS – a rather lonely task – for over 15 […]
By David Tuller, DrPH. This morning I sent the following letter to Fiona Godlee, editor-in-chief of The BMJ and editorial director of BMJ. I cc-d Carol Monaghan MP, Darren Jones MP, and Nicky Morgan MP. ********** Dear Dr. Godlee— More than a dozen years ago, a group of leading medical journals agreed that […]
From The Yorkshire Times. A former Ripon Grammar School student has achieved his dream of circumnavigating the globe by bicycle after arriving back home in Yorkshire, where his epic 17,134-mile journey began 15 months ago. Iain Johnston successfully completed his monumental challenge when he cycled into his home town of Ripon after pedalling […]
From Solve ME/CFS Initiative. I was an elementary school music teacher, community volunteer, church pianist, wife, and young mother when I became ill in March, 2000. My doctor said I had mono and I was totally bed bound. The sickness wiped away my memory and I lost memories of my children as babies, […]
By Sue Jones and Mel Storey in The Conversation. More than 50% of care home residents are being prescribed medicines that they do not need, or which do not properly address their health problems. Antipsychotics, for example, are often overused to treat the behavioural and psychological symptoms of dementia. But this problem is not easy to remedy. The […]
By Brian Hughes in Not The Science Bit. Lines are drawn A quarter of a million Britons have been diagnosed with myalgic encephalomyelitis (ME), the condition also known as chronic fatigue syndrome (CFS). ME/CFS is a severe debilitating illness that renders patients either temporarily or perennially immobile. Sufferers will have often led very active lives […]
By Kirsty Hire in The Mighty. I remember in the late 1990s watching a film about a group of teenagers who dabble in witchcraft, with disastrous consequences. They use a form of magic called a “glamour,” which allows the witches to create an illusion, concealing the true form of something. In the film, glamours are used […]
By Rebecca Giddings in The Mighty. Everyone knows when you are ill, you are in bed and can’t do anything. Obviously this example is great for someone with the flu, but what if you have a chronic illness, an illness that is going to last your lifetime? Are you supposed to just hide away in […]
From Syndrome A. When I was in second grade, a little girl started calling me Weird One. I was elated. I felt that I had been knighted with some sort of public identity and it felt wonderful. I felt as though I belonged in some way and I hardly ever felt as though I […]
By Gabby Klein in Relating to ME. My thanks to advocate Eileen Holderman for her consultation on this blog post The US government health agencies and some organizations who purport to represent people with ME (pwME) are deceiving this community by purposefully conflating names and criteria for myalgic encephalomyelitis (ME), and the government constructs […]
By Hannah Gibson in The Spinoff. What is it like to have a disease that nobody can ‘see’ and which society can shame you for talking about? To mark International ME/CFS Awareness Day, Hannah Gibson writes about her experience with ME/CFS, and the struggle to have her condition legitimised in Western medicine. When […]
From SAGA Magazine. Seeds such as pumpkin, sesame and sunflower pack a powerful health punch and a quick look at their nutrient content will tell you why. Seeds contain high levels of essential fatty acids, the full profile of amino acids needed to form complete and digestible protein, plus vitamins A, B, C […]
From YorkMix. Welcome one and all to the land of crackles, oohs, aahhs, hot dogs and smoky-smelling coats. Yes it’s time to celebrate York’s most famous plotter Guy Fawkes by setting fire to things. There are lots of bonfires and firework displays in and around the place. Nothing at York Maze this year though. […]
By Emily Hennings in This Is Local London. Claudette Lawrence, 49, is an activist and campaigner who also suffers with myalgic encephalomyelitis (ME), which can cause extreme mental and physical exhaustion. She has set up the petition because she has recently come into contact with a lot of people who are having problems when it […]
By Ryan Prior in CNN Health. yan Prior visited 16 doctors with various specialties to identify his illness. Ryan Prior is a cross-platform associate producer at CNN. He has suffered from chronic fatigue syndrome for 11 years. The views expressed in this article are solely his. Atlanta (CNN)Every morning, I shave, brush my […]
By Richard Tol in The Conversation. Venice has flooded. But while worry about the worst floods in a decade and warnings about the impacts of climate change and sea level risedominate most of the media coverage, there’s a more complex story to be told. In Venice, floods are a feature, not a bug. The city was founded by people fleeing […]
This is the text of an email I’ve sent to York MPs to gain support for a Parliamentary Debate on ME. We are entering an extremely crucial period where NICE are reviewing their guidelines to potentially remove the harmful Graded Exercise Therapy (GET) as a recommended treatment for this illness. They are however loading their […]
By John Siddle in Surrey Live. The cruel condition affects 250,000 people in the UK. An 80-year-old from Farnham has had to skip every family gathering, birthday and Christmas over the past 20 years after a shock diagnosis of a devastating ‘living death’ illness. Nancy Collins a former NHS nurse was struck down with Myalgic Encephalomyelitis (ME) 20 […]
From Dizzy Girl Writes. In view of my last blog post, I have decided to email NICE to talk about my experiences of having ME under the current guidelines and to raise my concerns about their panel. The latest tweets I’ve seen suggest that their panel for the review of guidelines for treating […]
By Veronique Mead M.D. in Health Rising. Thanks again to Veronique for providing her intriguing take on chronic fatigue syndrome (ME/CFS). This is one of a series of articles from Health Rising which feature hypotheses created by health care professionals with ME/CFS or who are associated with ME/CFS. (It is a long post – you […]
From Invest In ME Research. Comment After failing ME patients for so many years with their guidelines, and despite being taken to a judicial review (by patients), and despite the NICE guidelines director seeming to admit that the current guidelines were unfit for purpose, NICE were able to begin afresh and really concentrate on […]
By Alex Evans in The Yorkshire Post. Two blood-chilling Yorkshire roads have been named in a list of the most haunted routes in the country. Stories of gruesome deaths, haunting spectres and a ‘terrifying’ hairy creature have lingered on certain Yorkshire roads for many years. Haunted roads in Yorkshire The B1249 between Driffield […]
By Mark Vink and Alexandra Vink-Niese in Health Psychology Open. Abstract The analysis of the 2017 Cochrane review reveals flaws, which means that contrary to its findings, there is no evidence that graded exercise therapy is effective. Because of the failure to report harms adequately in the trials covered by the review, it cannot […]
Wed 21 Nov at 2 pm - Coffee Club, Novotel York.
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Mon 3 Dec at 11 am - Coffee Club at Bar Convent, 17 Blossom St, York.
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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.
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:
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:
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:
The Sandbag Times is an Online Magazine written by Veterans for Veterans
which brings you all the latest national and international Armed Forces and Veterans news. With insights each week into Veterans Charities, organisations, events and lots more. It also supports the work being done by The York ME Community.
To keep in touch with all things military, click on the link below:
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.
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.
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 |
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
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…)