Carol Monaghan, MP for Glasgow NW. SNP Spokesperson for Education, Armed Forces & Veterans, is delighted that @CommonsBBCom have granted a Backbench debate on #ME. This debate will take place on Thursday 24th January. Thanks to everyone who has campaigned to achieve this.
By Cort Johnson in Health Rising. The Best, Most and Least of 2018 A look back at a most interesting year which has to start with Cortene… Treatment Nicest Surprise It wasn’t supposed to go like this. First, in a disease like ME/CFS, you’re supposed find a repurposed drug or two to treat […]
By Torstein Egeland et al in Tidsskriftet. Although there are good diagnostic criteria for myalgic encephalomyelitis, knowledge of the disease is often lacking and this can result in misdiagnosis and incorrect treatment. There is a need for more research, greater expertise among clinicians, and refinement of the diagnostic criteria. In the literature and […]
From YorkMix. The York Ice Trail is on its way, with some spectacular new additions. Taken out of the Christmas frenzy, the event has been moved to help boost a quieter time of year. It runs on Saturday 2 February, between 10am-6pm. It’s the biggest outdoor ice trail in Britain – 35,000 people visited […]
By Eiren Sweetman et al in Sage Journals. Abstract. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a poorly understood disease affecting 0.2%–2% of the global population. To gain insight into the pathophysiology of ME/CFS in New Zealand, we examined the transcriptomes of peripheral blood mononuclear cells by RNA-seq analysis in a small well-characterized patient group […]
By Michael B. VanElzakker, Sydney A. Brumfield and Paula S. Lara Mejia in Frontiers in Neurology. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is the label given to a syndrome that can include long-term flu-like symptoms, profound fatigue, trouble concentrating, and autonomic problems, all of which worsen after exertion. It is unclear how many individuals with this diagnosis are […]
Many people don’t give their workplace health and safety a second thought each day, but there are more than likely many dangers that surround you and your colleagues, such as trip hazards and work-related stress. While your boss has a duty of care to protect you onsite, it’s also up to a company’s employees to […]
By Jaime in #MEActionNet. Though science may speed along a bit fast to ‘catch’ on audio, you can also listen to me read this article on #MEAction’s Soundcloud here. We are pleased and proud to announce that our two research fellows, Sydney A. Brumfield and Paula S. Lara Mejia, have written and released their first […]
By Adam Harris in thejournal.ie. As schools open up across Ireland this week, it is business as usual for most students. They will be taught by the same teacher, in the same way, with the same curriculum and supports that were always in place. Indeed, after a day or two, it will probably feel […]
By Eleanor Segall in Metro Lifestyle. Chronic fatigue syndrome, also known as ME (myalgic encephalopathy) is estimated to effect 250,000 people in the UK. It is a serious and debilitating illness that at times can render its sufferers unable to function effectively due to the level of fatigue. ME is more than just exhaustion. […]
By John Pring in Disability News Service. Campaigners have welcomed the decision to install what is believed to be the country’s first accessible parking bay for disabled people who need to recharge their electric vehicles. Only holders of blue parking badges who also need to recharge their electric vehicles will be allowed to […]
By Simon McGrath in ME/CFS Research Review. OPINION Although there are no treatments for ME/CFS on the horizon, things are looking up thanks to recent findings and a substantial increase in the amount of high-quality research. The field still needs much more funding. Do you remember the buzz around rituximab? Oncologists Dr Fluge […]
By John Pring in Disability News Service. A disabled campaigner who took nine journeys on the same day to check the accessibility of the services provided by the UK’s largest coach operator experienced signifcant problems on all but one of them. Wheelchair-user Doug Paulley had booked assistance in advance for services between Leeds and Bradford […]
By KATARINA ZIMMER, in The Scientist. EDITOR’S CHOICE IN CELL & MOLECULAR BIOLOGY The paper B.H. Abuaita et al., “Mitochondria-derived vesicles deliver antimicrobial reactive oxygen species to control phagosome-localized Staphylococcus aureus,” Cell Host Microbe, 24:625–36, 2018. According to biology textbooks, a macrophage engulfs a bacterium, internalizes it in a toxin-filled vesicle called a phagosome, then shuttles the […]
By Henry Claypool In The Detroit News. Saturday marks the opening of the 2019 NAIAS Detroit Auto Show, led by its presentation series on the future of the automobile, Automobili-D. Conference attendees can expect panels on innovations such as vehicle to infrastructure connectivity, urban mobility, smart cities, building a mobility workforce, ride sharing, cybersecurity and […]
From Georgetown University Medical Center. WASHINGTON (January 10, 2019) — Findings from a novel online questionnaire of people with chronic fatigue syndrome (CFS) who rated their perceptions of care in a hospital’s emergency department suggest the majority of these patients do not receive proper care, say researchers from Georgetown University Medical Center. The study, […]
By JENNIFER SPOTILA in statnews.com. When I first developed myalgic encephalomyelitis in 1994, I had no idea that I would be just as sick 25 years later, or that there would still be limited scientific understanding of the disease and no effective treatments. Nor did I imagine that my career as a lawyer was over, and […]
By John Pring in Disability News Service. The roll out of the government’s much-criticised universal credit benefit system has not been delayed and will proceed as planned, the Department for Work and Pensions (DWP) has confirmed. Reports at the weekend suggested that new work and pensions secretary Amber Rudd had decided on a […]
By Victoria Venable in The Mighty. When people talk about the “isms” in society, racism and sexism are usually the first that come to mind. Later in the list comes ageism. Often forgotten and misunderstood, is ableism. Ableism: Discrimination or prejudice against individuals with disabilities. In the last nine months of my […]
By Valerie Eliot Smith in valarieeliotsmith.com. The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times. IntroductionI strted writing this blog in 2012. For several years since then, I have kept starting drafts on a particular topic, only to then abandon them because the subject-matter is complex […]
From YorkMix. Two friends from Rome have brought the authentic taste of Italian food to the streets of York. Alessandro Venturi and Robin George this week opened up A’Roma Pasta Bar on Silver Street, next to Shambles Market. It serves up a mix of home-made pasta dishes, bread and cakes. And they […]
From Science Magazine. Sunlight allows us to make vitamin D, credited with healthier living, but a surprise research finding could reveal another powerful benefit of getting some sun. Georgetown University Medical Center researchers have found that sunlight, through a mechanism separate than vitamin D production, energizes T cells that play a central […]
From The Sydney Morning Herald. Alison Hunter used to say she had lemonade in her legs and “shimlers” in her face. Still in primary school when she first became ill, those were the words she chose to describe the bizarre and frightening sensations that afflicted her. Vocabulary was still an issue when Alison died. […]
Having chronic illness or pain can be very frustrating and debilitating. It affects all areas of your life and your physical as well as your emotional well-being. The upside is that it can be manageable with the right approach and mindset. Review the following four strategies so that you can better deal with chronic […]
By David Tuller, DrPH In addition to giving a couple of talks in Norway, I also answered some questions from Trude Schei, assistant Secretary General of the Norwegian ME Association. I doubt I said anything I haven’t stated many times before. However, members of the GET/CBT ideological brigades–in Norway and elsewhere–continue to maintain […]
From the Life Of Pippa blog. Although I’m not a particularly superstitious person, there’s always been something about the number 18 in my family. It’s when all the birthdays and anniversaries and life events seem to fall, it’s the addresses we live at, and it always seems to be an intrinsically lucky […]
By Daniel Coughlin in SAGA Magazine. Keen to drop a few pounds? Losing weight is all about burning more calories than you consume, but this can leave you feeling hungry and liable to reach for the nearest chocolate bar, undoing all your good work. Eating extra-filling low-calorie foods will help you stave off the hunger […]
By Corina Duyn in the journal.ie. I have been ill with Myalgic Encephalomyelitis (ME) for 20 years. But it is only in the last year, and especially in the past six months that my most basic needs are not being met – at a time when my illness has become more severe and […]
By Simon Rushton in iNews. Officials behind Universal Credit are being criticised for failing to track data on people who want to apply offline. Universal Credit is the government’s first digital-only service, and claimants must apply online for the Department of Work and Pensions benefit. But there worries that the system is excluding […]
By Elizabeth Cohen, CNN. (CNN)When 7-year-old Bailey Sheehan arrived at a hospital in Oregon partially paralyzed, a doctor said the girl was faking her symptoms to get her parents’ attention because she was jealous of her new baby sister. But that doctor was proved wrong when an MRI showed that the girl had acute […]
From Invest in ME Research. A Year On It is a year since news came of the passing of Anne Örtegren. The lives of those who have passed away are placed in the memory of the living. A year passes and the shock of the news of Anne’s death may have ebbed away […]
By The Countryman’s Daughter. So here we are into another new year and memories of the Christmas festivities are still hanging in the air. I have a friend who, come the day after Boxing Day, takes down all her decorations as she can’t bear all the glittery clutter and the ever-dropping needles from her […]
By Marilyn Simon-Gersuk in #ME Action. Researchers have published a paper that shows various measures of deformability in the red blood cells of people with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) indicating that they are significantly stiffer in people with ME/CFS than those from healthy controls. The observations suggest that red blood cell transport through microcapillaries may […]
An old story, but worth repeating for those who believe ME is all in our minds. By Michelle Roberts in BBC News. Patients with ME will no longer be able to donate blood in the UK under new safety guidelines. Officials say the ban, starting on 1 November, is designed to protect the health of […]
Thu 24 Jan - Carol Monaghan, MP for Glasgow NW. SNP Spokesperson for Education, Armed Forces & Veterans, is delighted that @CommonsBBCom have granted a Backbench debate on #ME. This debate will take place on Thursday 24th January.
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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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31 May 2019 - Invest In ME Research Conferences, London.
This annual international, CPD accredited research conference provides a platform for the latest and most promising biomedical research into ME.
IIMEC14 will be the fourteenth conference and regularly attracts researchers, clinicians, doctors, nurses, occupational therapists, healthcare professionals and patient groups twenty countries from around the world.
The conference is a full day event from 09.00 to 17.30.
For up to date information, click on the link below:
Link to Invest In ME Research Conferences Information
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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 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.
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:
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…)