By Jennie Spotila, in 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 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 […]
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, […]
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 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 Cort Johnson in Health Rising. Despite the current lack of consensus as to the underlying biological basis of CFS, there is considerable evidence … to highlight an abnormality of the autonomic nervous system as a unifying pathological factor. Newton et. al. 2013 A fascinating case of research confluence took place a couple of […]
By Skye Wheeler in HUFFPOST. Myalgic Encephalomyelitis, chronic fatigue syndrome, CFS/ME. These are just a few terms to describe one of the most destructive illnesses known to man. Manifesting as unrelenting fatigue and profound pain, ME/CFS is destroying the lives of 250,000 people in the UK. One in four are so severely affected […]
By Jo Hadler in ME Support. I was 14 when I began to notice that I was different from my school friends. I had what I thought were growing pains in my legs, stomach problems, felt sick, had frequent headaches and worst of all, I had no energy. After many blood tests and […]
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 Anil van der Zee, from his Blog, Capture, Dance, Words. This year I’ve arranged for saline IV’s. As I have a hard time tolerating any medication, and I’m not improving enough because of it. Saline IV’s seemed to be the best solution to help with my orthostatic intolerance or rather my postural […]
By Gemma Cresswell in The Mighty. Years ago, I was able to confidently see the positive sides of how myalgic encephalomyelitis (ME) had affected my adolescence and made me the person I’d become. Yes, it had been tough, isolating and upsetting, but being seemingly on the other side of it, I could see how […]
By Guy Kelly in The Telegraph. It has been more than 60 years since a bewildering epidemic swept through the Royal Free Hospital in north London, rendering almost 300 members of staff incapacitated and forcing the place to close for three months. At the time, in 1955, the mysterious, polio-like outbreak (called […]
From the CDC (Centers for Disease Control and Prevention) Website. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, long-term illness that affects many body systems. People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. People with ME/CFS have severe fatigue and […]
By David Tuller. First, for those who might have missed it, here’s a conversation from This Week in Virology (TWiV), posted a few days ago. Dr. Racaniello and I discuss the CDC, NICE, Esther Crawley’s ethically challenged behavior, the CMRC, and other stuff. Second, earlier today, I sent the following e-mail to Sir Andrew Dillon, […]
By Jerrold Spinhirne on his Facebook Page. Increasingly, researchers, doctors, advocates, and patients are using the mixed term “ME/CFS” as if it had some clear, specific meaning and referred to some identifiable disease. In actuality, however, the mixed term “ME/CFS” is ambiguous, logically incoherent, and a major impediment for making progress in research […]
The York ME Community has linked up with The Disability Employment Company evenbreak. This is a company run by disabled folk who believe that disabled people deserve an ‘even break’. Evenbreak, a not-for-profit social enterprise, was formed to achieve three aims: • To help inclusive employers attract more talented disabled people; • To […]
By Jane Shaw in The Mighty. Like its name, myalgic encephalomyelitis is also rather complicated and extraordinary. The illness made Little Miss Brain Fog feel like Little Miss Dotty, Little Miss Scatterbrain, Little Miss Fickle, Little Miss Whoops, Mr. Bump, Mr. Topsy Turvey, Mr. Forgetful, Mr. Lazy, Mr. Muddle, Mr. Dizzy, Mr. […]
By Linda Avey in prweb. Precise.ly, Inc. has been selected to be the patient portal in a $40 million, five-year NIH-funded, multi-center study focused on the study of chronic fatigue syndrome (ME/CFS). It represents the first major research support for a condition that affects millions of Americans. SAN FRANCISCO, (CALIF.) (PRWEB) OCTOBER 09, 2017 […]
By Riki Janssen in Observant. Mythbusters Patients are not just a little bit tired, but are permanently exhausted. Sleeping doesn’t help much – if they can sleep properly at all – and they usually pay a high price for any physical exertion: remaining even more tired than they were, for days on end. According to […]
From The Occupy ME Blog. In aggregate, 2017 turned out to be the biggest year of ME/CFS funding at NIH ever. But when I scratched the surface, I found bad news buried within the superficially good news. We are still at the bottom of the funding ramp that Dr. Collins promised us, and […]
From Helse Bergen. RituxME is a multicentre study conducted in five study centres in Norway: the Oncology Department at Haukeland University Hospital, the ME/CFS Centre at Oslo University Hospital (Aker), the Dept of Medicine at Notodden Hospital, the Dept. of Pain and Complex Disorders at St. Olav’s Hospital in Trondheim, and the […]
A guest post by Dr. Keith Geraghty Honorary Research Fellow at the University of Manchester, Centre for Primary Care, Division of Population Health and Health Services Research in James C Coyne’s website, Coyne of the Realm. The Advertising Standards Authority previously ruled that the Lightning Process (LP) should not be advertised as […]
By Michaeleen Doucleff in npr.org. Health organizations are emphasizing that myalgic encephalomyelitis/chronic fatigue syndrome is a serious long-term illness, not a psychological disorder, and that standard forms of exercise do not help. Instead, they’re acknowledging that exercise can make the disease much worse unless doctors and patients are very careful. The Centers for Disease Control and […]
By James C Coyne. Those of us who are accustomed to the Science Media Centre UK (SMC) highly slanted coverage of select topics can detect a familiar defensive, yet self-congratulatory tone to an editorial put out by the SMC in reaction to its broad coverage of Esther Crawley’s SMILE trial of the quack treatment, Phil Parker’s […]
By Julia Manning, Founding Director 2020health. About this report. It is hoped that policy makers and commissioners will use this information to make decisions on the planning and funding of CFS/ME services and research. For the sake of clarity and relevance to UK public health, we adopt the nomenclature of ‘CFS/ME’ throughout this […]
By Julie Rehmeyer and David Tuller in statnews.com. For years, people with chronic fatigue syndrome have wrangled with the Centers for Disease Control and Prevention over information on the agency’s website about this debilitating illness. The website highlighted two treatments that became the de facto standards of care: a gradual increase in exercise and a form of psychotherapy […]
By Litsa Dremousis in The Washington Post. Remember the last time your WiFi went out? How you felt alone in an empty world? You tried to restart it yourself, to no avail. Then you called tech support, which was as helpful as pouring glue down a clogged drain. You were baffled that no one […]
By Cort Johnson in Health Rising. Unrest is about to spring into action. Scheduled to go into widespread theatrical release in dozens of theaters over the next couple of months: on Sept 22nd in the U.S. and Oct. in the U.K., Unrest is about to really make its mark. Jen Brea and her […]
In Blog by Alyssa Reid. According to USDA guidelines, it is believed that up to 80% of Americans are deficient in magnesium. When you read through the symptoms of magnesium deficiency, many of them ring true in regards to fibromyalgia and CFS/ME/SEID symptoms…So, I have to ask, is magnesium deficiency possibly the root […]
From the Solve CFS/ME Initiative. Myalgic encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS), also known chronic fatigue and immune dysfunction syndrome (CFIDS), is a complex and debilitating chronic disease with a serious impact on one’s quality of life. What are the symptoms of ME/CFS? The most common symptoms of ME/CFS include post-exertional malaise (PEM), […]
From ME Research UK. Fatigue is a disabling consequence of a wide range of chronic diseases, including cancer and multiple sclerosis. It was one also of the symptoms associated with past outbreaks of myalgic encephalomyelitis (ME); in his famous 1959 review of outbreaks Sir Donald Acheson described, “…a period of convalescence prolonged by fatigue, […]
Sasha Nimmo reports on David Tuller’s blog in #MEAction. In his Virology blog post, David Tuller examines results of ‘sister’ to the PACE trial In 2003, when the United Kingdom (UK) Medical Research Council announced the PACE trial, they also announced the Fatigue Intervention by Nurses Evaluation (FINE) trial. Why haven’t we heard […]
By Russell Logan in shoutaboutme.com An international group of scientists has added to the growing condemnation of the PACE trial study, published in the Lancet in 2011, which has propped up poor government and clinical care policies for those with the serious neurological illness myalgic encephalomyelitis (ME), sometimes called chronic fatigue syndrome. An open letter from […]
Hello! My name’s Barnaby Eaton-Jones, but that’s my problem. I’ve had M.E. since 1991, so that means I’ve been unwell for longer than I’ve been well. This, as you may imagine, is described by me as ‘a bit of an arse’. Which is somewhat of an understatement. So, picture the scene – a young, lithe, […]
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Wed 19 June 2019 - at 2 pm - The York ME Community Coffee Club at The Longboat, Blossom St, York.
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Mon 1 July 2019 at 11 am - The York ME Community Coffee Club at Bar Convent, 17 Blossom Street, York.
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Weekly - Every Wed, 8 pm - 9 pm on Twitter, ME Awareness Hour using the #MEAwarenesshour hashtag.
Access Your Life is a site run by Felix and Lauren, with a little input from Fliss, the dog!
The site is full of great information that I feel will benefit many within The York ME Community and beyond.
To go to Access Your Life, 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:
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.
STOP PRESS: FULL DEBATE TO BE HELD IN PARLIAMENT ON THURSDAY 24TH JANUARY 2019
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:
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 York Mobility Scooter Club has been set up as a Facebook Group with the idea of being somewhere for anyone in the York area to talk about all things mobility scooters. From those first steps of being so wary of taking that first step of admitting that you need help, to the best scooter for individual needs. All reviews are welcomed !
It will also be where we can talk about accessibility issues in York for scooters, and if this develops into a strong theme, I may open a separate group on that subject.
My aim is also ideally in time to meet up for some sort of wheeled rambles, and so suggestions of sensible routes would be welcomed.
I don't aim to set many rules, just that we all support each other and lend a help when we can. Please feel free to invite others who are aiming to get a scooter, or have one, for whatever reason, and let's see where this little adventure takes us.
To read the ME Research Summary 2019 by ME Action covering the last ten years, click on the link below:
There is a great need for the training of those with a Duty of Care to those with Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS). For those in Healthcare, Education or Business with this Duty of Care, this E-Learning Course is the one for you.
To learn more, click on the link below:
AccessAble in York provides information on Shopmobility, Talking Signs, Dial & Ride, York Wheels and accessible Hotels, Restaurants, Public Toilets and a whole lot more in our city. To find out more before setting off for York, 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 supported The York ME Community.
They headed off from The York Eye (Clifford’s Tower) on Sun 28 Apr on a run out to the coast, 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.
Last season was a great success with 15 teams involved, and this season is going brilliantly with the aim of spreading ME Awareness. As a bonus, we have also raised £725.00 for Invest in ME Research.
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 join in for next season and help raise ME Awareness in your local area, have a look at the tab at the top of the site for more information.
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:
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.
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, was released to mark and support ME Awareness Day, 12 May 2018.
It was 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: