By Frank NM Twisk in World Journal of Methodology. Abstract Although myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are considered to be synonymous, the definitional criteria for ME and CFS define two distinct, partially overlapping, clinical entities. ME, whether defined by the original criteria or by the recently proposed criteria, is not equivalent […]
By Cort Johnson in Health Rising. Having any disease is scary, but having chronic fatigue syndrome (ME/CFS) and/or fibromyalgia (FM) often adds a hefty dose of confusion and bewilderment to that fear. Not only are people with ME/CFS and FM typically exhausted and in pain, but problems with short-term memory and information processing […]
By Tom Kindlon in Journal of Health Psychology. Abstract Reporting of harms was much better in the PACE (Pacing, graded Activity, and Cognitive behavioural therapy: a randomised Evaluation) trial than earlier chronic fatigue syndrome trials of graded exercise therapy and cognitive behavioural therapy. However, some issues remain. The trial’s poor results on objective measures […]
By Gracie Bonds Staples, The Atlanta Journal-Constitution. Chronic fatigue syndrome. For more than two decades, those three words have consumed Liz Burlingame because, well, words mean something. They convey feelings and connote action. They can comfort or cause pain. They can be our best friend or our worst enemy, failing us completely. That’s how Burlingame […]
By Erin Migdol in The Mighty. Everyone has said “I’m tired” at one point or another. But those deceptively simple words can have so many meanings. Without knowing the extent of the exhaustion someone with chronic illness is feeling when they say they’re tired, people may think your “tiredness” can be cured by a nap or early night, like theirs, not […]
Abstract Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disease characterized by chronic, profound, disabling, and unexplained fatigue. A variety of studies have been performed to establish objective biomarkers of the disease, including positron emission tomography (PET) molecular imaging and neuro-functional imaging using magnetic resonance imaging (MRI) and magnetoencephalogram (MEG). In this chapter, we summarize […]
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 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 […]
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 Christen Marie in The Mighty. For those of us dealing with chronic pain or chronic illness such as fibromyalgia, autoimmune disorders, or any host of other physical or mental health issues, there is often this one overriding issue that can wreak havoc on our lives and yet be very difficult to explain to the average person. Chronic fatigue. Chronic […]
By Dr Nick Knight in GQ. For years this debilitating disorder was viewed with scepticism and doubt, but the GQ Doctor and most medical professionals now agree it is a real and serious condition. Dear GQ Doc, Is chronic fatigue syndrome the same as ME? David, via email. For years, chronic fatigue syndrome […]
By Cort Johnson in Health Rising. Breaches in the Barrier The last article reported that Younger speculated that people with chronic fatigue syndrome (ME/CFS) have an immune-triggered metabolic disorder. The widespread neuroinflammation found in ME/CFS patients provides a clue, he thinks, to what’s going on. It suggests that immune cells are breaching […]
By Linda Pecone in The Lyons Recorder. Chronic Fatigue Syndrome (CFS) has been described like getting the worst flu you have ever had, times 10, that never gets better. CFS currently affects more than one million Americans, striking more people than multiple sclerosis and many forms of cancer. The main characterization of CFS is […]
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 […]
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 […]
By James Moore in Patient Worthy. According to a story from Medical Xpress, chronic fatigue syndrome is one of the most poorly understood diseases. Although the name chronic fatigue syndrome seems to merely suggest that patients are just run down or overly stressed, the reality is that the disorder can lead to severe […]
By Nkayla Afshariyan in abc.net.au. There’s been a major breakthrough for people living with chronic fatigue syndrome, with new research into the causation of the disease undercovering it’s a pathological illness. Researchers found chronic fatigue syndrome and the related myalgic encephalomyelitis, or ME, is a calcium ion channel impairment condition. For those who are living with […]
By Linda J. Dobberstein, Chiropractor, Board Certified in Clinical Nutrition, in Wellness Resources. Cutting-edge research published just days ago, shows that patients dealing with Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (CFS/ME) have neurological inflammation and it is widespread throughout the brain. Up until recently, it has only been able to be hypothesized that these individuals dealing with […]
By Sasha Nimmo in ME Australia. Three senators have formed Parliamentary Friends of Myalgic Encephalomyelitis (ME) and chronic fatigue syndrome (CFS) group in Australia’s federal parliament. The Parliamentary Friendship group is co-chaired by Western Australian Greens Senator Jordon Steele-John, Tasmanian Liberal Senator Jonathan Duniam and Queensland Labor Senator Claire Moore. This group will provide a […]
From Living With Chronic Fatigue Syndrome. In a subsequent blog entry; when the phase III trial is fully released, I will detail the theory behind using Rituximab as an ME treatment as well as present the studies investigating its usage. This blog entry is focused on my experience with Rituximab. I had to […]
By Daniella White in The Canberra Times. Susan Hutchinson was never shy of an adventure, from climbing volcanos in Rwanda to joining the army reserves. She now uses a mobility scooter to get around, can only work 10 hours a week on her PHD and relies on other people to help with everyday tasks […]
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 […]
From BBC News. A common treatment for chronic fatigue syndrome should be scrapped immediately, according to one of the UK’s leading experts in the illness. Dr Charles Shepherd says graded exercise therapy (GET) can actually be harmful to some people. He argues the idea of getting patients to do increasing amounts of exercise […]
By S. Eyssens. Preface: “The public have an insatiable curiosity to know everything, except what is worth knowing.”Oscar Wilde. Until Europeans discovered Australia, Black Swans did not exist, let alone could they even be imagined. They did not make sense, nor could they be, as they challenged common sense and common knowledge at that time in our […]
By Alecia Humphreys in Ladue News. You are officially one month into 2018. Maybe it’s the year you pledged to work out more, read more, travel more – do anything and everything more. While it’s great to have goals, it’s hard to implement more into an already hectic schedule, especially when you aren’t allowing yourself […]
By: Katie Medlock in CARE2. Chronic fatigue syndrome is one of those disorders that many people may joke about having, but the reality for actual sufferers is no joke at all. Because the main symptom, fatigue, is something that everyday folks experience every now and then, they don’t necessarily understand that those with a diagnosis experience […]
By David M Perry in Pacific Standard. In her new film Unrest, Jennifer Brea offers a groundbreaking look at the power of community where medicine falls short. When Jennifer Brea was 28 years old, she got sick and spiked a fever of 104.7 degrees. The fever went down, but soon she found herself […]
By Eleanor Pringle in North Norfolk News. The hidden struggles of life with Chronic Fatigue Syndrome (CFS) will be highlighted this month as the Sheringham Little Theatre and Norman Lamb back an inspiring North Norfolk organisation. The Sheringham CFS group is the only support group in North Norfolk which focuses specifically on the disease. Now, […]
By Chris Goudreau in ValleyAdvocate.com. Erica Verrillo of Whatley has written more than half a dozen books and launched a non-profit national organization, all while being partially bedridden for the past three decades. Verillo has Myalgic Encephalomyelitis (M.E.), a chronic and fluctuating neurological disease characterized by extreme exhaustion, muscle weakness, sensitivity to pain, confusion, forgetfulness, […]
By Ellen Wiles in The Express. Before I fell ill life was sweet and full of promise. Fresh out of Oxford University, where I had somehow come top in the year, I was working in consultancy while I figured out what I really wanted to do. Then just before Christmas I got flu. I spent […]
By iamclarkellis in The Self Taught Author Blog. There’s a very interesting discussion about wearable heart rate monitors on Science for ME. I’m not going to reproduce those discussions here but you might want to check them out. It’s free to become a member and it’s a very good forum. There’s some research which suggests post […]
Rebecca Baker, Social Affairs Reporter, The Advertiser (Australia). World-first research in Adelaide that involves taking the blood samples of donors every seven minutes aims to unlock the mystery of a debilitating illness that has no cure or treatment. Thousands of samples taken for the study are now being stored in a freezer to […]
From Better Health Channel. Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), is an illness that affects a person’s nervous system (commonly called a ‘neurological illness’). It can occur at any age and can affect children as well as adults. At least 35,000 Victorians have ME/CFS. The term ‘myalgic encephalomyelitis’ means pain in […]
By Ruchira Sharma in International Business Times. The illness myalgic encephalomyelitis (ME), more commonly known as chronic fatigue syndrome, is bewildering for a number of reasons. For one, there are thought to be around 250,000 sufferers in the UK, most of whom are women. Women account for four times the number of male sufferers. While ME follows […]
Wed 19 Dec at 2 pm - Coffee Club, Novotel 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…)