By Marianne Granger in #MEAction. In my forties I was moving forward fulfilling my drive to be a community organiser/communicator/coach (my day job) and also a screenwriter (a remnant of my earlier training and work as a stage actor). Being there for my grown children and reveling in the bliss of holding my grandchildren […]
From #MEAction. Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. It often follows an infection and leaves 75% of those affected unable to work and 25% homebound are bedridden. An estimated 15-30 million […]
By Wilhelmina Jenkins in #MEAction. When I became ill in 1983 with what is now called ME/CFS, my life as I knew it was abruptly destroyed. I dropped into a world of pain, exhaustion, and dozens of other baffling symptoms, most particularly the cognitive disruption that robbed me of the life in […]
By Jack Croxall in #MEAction. I came to on the floor of a supermarket in an affluent London borough. I was staring up at a paneled ceiling, half-blinded by piercing white lights. After a groggy moment of confusion, panic set in. I leapt up, finding myself in the middle of a queue […]
From #MEAction. Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. It often follows an infection and leaves 75% of those affected unable to work and 25% homebound are bedridden. An estimated 15-30 million […]
By Adriane Tillman in #MEAction. Allies are critical to the success of any movement and even more so in the case of people with myalgic encephalomyelitis (ME). So many people with ME are bedridden or housebound and unable to participate in some advocacy and activist actions. While we at #MEAction work hard to […]
By Erica Verrillo, who is President of the American ME and CFS Society (AMMES) in #MEAction. Years ago, Dr. Bell made the observation that many people currently living in cars most likely had chronic fatigue syndrome (CFS). (The acronym myalgic encephalomyelitis (ME/CFS) was not used at that time.) Under any circumstances, the threat of homelessness […]
From #MEAction. As always, our community continues to amaze us with its tenacity, creativity, intellect, hard work and generosity. Enjoy a round-up of some of the community happenings these past few months where people with myalgic encephalomyelitis (ME) around the world continue to fight for recognition, treatment, care and dignity. Austrian broadcast station @ATV […]
By Zeraph Dylan Moore in #MEAction. Here is a question for you: Is your life small or large? How do you know? Is it possible to have a big life in a single, small room? Or to lead a small life that is lived in many places? Questions like these have become more pertinent to […]
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 #MEAction. On 25th May 2018, NICE held an engagement workshop with stakeholders, looking at the draft scope for the new guideline on ME/CFS. This is the second workshop held by NICE in which stakeholders were given a chance to influence the development of the new guidelines. The draft scope will be amended […]
By Caroline Christian in #MEAction. I am lucky in that I did not realize the fallibility of medicine until I reached the age of 38. This is when I was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a devastating neuroimmune disease wrongly believed by many doctors to be a psychiatric condition. Throughout the past decade of navigating […]
From #MEAction. ME advocate Mary Dimmock has written a comprehensive report about the flawed science that led to the recommendation of cognitive behavioral therapy (CBT) and graded exercise therapy (GET) for people with Myalgic Encephalomyelitis. The patient community has long reported these treatments to be ineffective and harmful, and, yet, health societies and […]
From #MEAction. Trial Uses Flawed Methodology That Can Lead To False Positives Following the release of the results of the SMILE trial, Ben HsuBorger of ME Action said: “The SMILE trial of the Lightning Process, a known quack treatment, for ME/CFS, used unblinded treatment coupled with subjective, self-report outcomes. It illustrates that such serious […]
By Adriane Tillman in #MEAction. Johanna Kaiser, a person who has had ME for decades, sent this open letter over Labor Day to Dr. Walter Koroshetz, director of the National Institute of Neurological Disorders and Stroke (NINDS) and Dr. Francis Collins, director of National Institutes of Health (NIH). Staff member Adriane Tillman only posted the article. Dear Dr. Walter Koroshetz and […]
By Cort Johnson in Health Rising. An entire state goes “ME”. That’s never happened before. Courtney Miller of Simmaron, Emily Taylor of the Solve ME/CFS Initiative, MEAction and the USAWG worked together to enroll the entire Nevada Congressional delegation to put its total support behind increased funding for ME/CFS. This is notable not just […]
By Adrianne Tillman in #MEAction. Government moves slow. Any action requires lengthy processes – all of the checks and balances intended to create better, more deliberate legislation. Activists for Myalgic Encephalomyelitis (ME) across the country understand the sausage-making well as they have sought for their state legislators to recognize the urgent challenges […]
From #MEAction. A view from the US. The National Institute of Health’s RFA for ME/CFS Collaborative Research Centers breaks new ground. For the first time, the funding agency is strongly encouraging researchers “to establish partnerships with patients groups and solicit their input” as part of their research plan. #MEAction assembled a […]
From #MEAction. Whether you are a musician, poet or puppeteer, expressing yourself through a body devastated by Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) is suddenly an impossible feat – and an improbable opportunity. #MEAction is excited to announce the launch of a virtual concert called #Bedfest on May 6th to […]
By Sasha Nimmo in #MEAction. The University of South Australia has approval to begin the trial, “Active video gaming to increase physical activity in adults with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.” The study has no set research criteria, despite studies that show 2 out of 5 patients are misdiagnosed with CFS/ME in Australia. The study does not […]
From MEAction. Recently, #MEAction sat down with Julie Rehmeyer to discuss her new book Through the Shadowlands, her op-ed in the New York Times with David Tuller, and next steps. What made you embark on a project like Through the Shadowlands? I’m a writer, and it was a big experience I was […]
From #MEAction. A View From The USA. The Illinois House of Representatives will vote on a state resolution this Thursday, March 23 that recognizes Myalgic Encephalomyelitis (ME) as a tragic, disabling disease, and that commits the state to improving the availability and quality of medical care, as well as encourages universities in Illinois […]
By Adrianne Tillman in #MEACTION. Momentum continues from the #MillionsMissing campaign that was born last May. Activists took to the streets worldwide in 11 cities in May – and in 25 cities in September – to protest their government’s neglect of people with ME. While the posters are now stored away, activism […]
Demand equality for people with Myalgic Encephalomyelitis #MillionsMissing is a movement to raise awareness for M.E., an underfunded and ignored disease. This September 27th, 25 cities in nine countries will demand change. We will present protest demands asking for increased government funding for research, clinical trials, medical education and public awareness. It’s not too […]
#MEAction has sent an 11,000-signature petition to The Lancet, calling for the retraction of “misleading” analyses and claims published in a 2011 PACE trial paper concerning the effectiveness of cognitive behavioural therapy and graded exercise therapy for ME/CFS. Copies of the petition, which when printed were over 400 pages, were also delivered to the UK […]
What was the study? Researchers used 100 blood samples from the Solve ME/CFS Biobank of patients who were long-term patients of expert clinicians and met the Fukuda and/or Canadian Consensus case definitions. These blood samples were compared in a blinded method with 79 healthy control samples from people who were matched on criteria such […]
Story by Sasha Nimmo in MEAction. (A view from Australia). Most of the $2.4 million in research the government says is for ME or CFS is spent on research into psychology, exercise or for other conditions such as hepatitis C. No studies funded in a decade. For Australia’s 94,000 people with ME, or possibly […]
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 […]
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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: