By John Pring in Disability News Service. A disability charity has been accused of “exploitative” and “disgraceful” behaviour after asking disabled journalists to write an article for its website without payment. The charity Scope sent out a message on social media this week seeking a “disability blogger” who could write an article […]
From A Life Hidden. Today is the 30th anniversary of the day I became ill. How surreal those words sound, even after three decades spent adjusting to them. My illness now accounts for three quarters of my life: a span of time so vast that it defies comprehension. When I fell ill as […]
By Rachel Carrington in Rooted in Rights. I park my car in a parking space reserved for those with disabilities. My door is barely open before I’m confronted by a woman who demands to see my handicap parking placard. Her mother is disabled, and she needs the space. I point her toward my […]
By Lisa Alioto in The Mighty. For the past six years I have lived with myalgic encephalomyelitis (ME). It’s a multi-system disease that affects the neurological, endocrine, immune and energy metabolism systems. Its hallmark symptom is post-exertional malaise (PEM). PEM is a reduction in functioning and a severe worsening of symptoms after even minimal exertion. […]
By Una Hearne. Introduction I am writing this to put a final nail in the coffin of the idea that ME/CFS is a psychosomatic issue; that it is ‘all in the mind’. Having both the physical illness ME/CFS (from age 16) and the mental illness Depression (since birth), I am in a […]
By John Pring in Disability News Service. The new Conservative government has described how it plans to fulfil the five major disability policy pledges it included in its general election manifesto. The details were included in a briefing document published alongside last month’s Queen’s speech by prime minister Boris Johnson. They cover social care, a […]
From #MEAction. It is with heavy hearts that we share the passing of ME community advocate, Cindy Siegel Shepler. Cindy lived with myalgic encephalomyelitis (ME) and multiple other health issues. She dedicated much of her increasingly limited time and energy to advocacy, increased awareness, and increasing research funds for ME. She had a […]
By John Pring in Disability News Service. A new book by a disabled researcher has detailed the “horrifying” levels of disability hate crime that take place every day on public transport across the UK. David Wilkin says the results of his research are “sometimes startling and almost always distressing” and illustrate the “ongoing […]
By Kerry Thompson in AccessAble. Disability blogger and campaigner Kerry Thompson, who has Muscular Dystrophy and uses a wheelchair, gives us her top 5 tips for making Christmas parties accessible. December is here! The shops are filled with Christmas Trees and decorations, the bars and restaurants are advertising booking Christmas parties, it’s a […]
From the Not Just Tired Blog. As I’m writing this post, I’m sat in bed, having to take time out to rest, whilst we have a family member staying with us for the weekend. Enjoying listening from afar to the lively chatter, yet not a part of it. Would I not rather be downstairs, […]
By David Tuller in Statnews.com. Few journals have been more admirable than The BMJ (formerly the British Medical Journal) and some of its sister publications under the BMJ brand in highlighting issues of direct significance to health care consumers. So it is baffling — and troubling — when BMJ editors fail to […]
By John Pring in Disability News Service. A local authority has become the second in London to set up an independent, user-led commission to investigate the barriers faced by disabled residents. Lewisham Disabled People’s Commission (LDPC) will be led by disabled people and will examine organisational, attitudinal and physical barriers faced by disabled […]
By Jo Moss in A Journey Through The Fog. Christmas can be a particularly hard time of year for people living with chronic ill-health. It can be a mental and physical strain, filled with potential pitfalls. I have to admit I’ve never been a Christmassy person. We (my family) didn’t celebrate Christmas when […]
By Jo Moss in A Journey Through The Fog. Since my heart procedure 2 weeks ago, it feels like I’ve done nothing but sleep. I know I should be thankful my poor, exhausted body is finally letting me rest, but I’m struggling with the notion that I’m just “being lazy” and the […]
By Colleen Downey in The Mighty. Self-esteem is generally described as the degree of regard or respect individuals have for themselves and is a subjective measure of worth that we place on our abilities and judgments; it is an understanding we create of our worth based on emotions and beliefs about how we […]
By Dominic Stanculescu in Health Rising. From Dominic I believe observations made in Intensive Care Units can further understanding of ME/CFS. Indeed, following a severe injury or infection some ICU patients fail to begin recovery for unknown reasons. This condition, termed “chronic” or “prolonged critical illness,” is characterized by neuroendocrine dysfunctions perpetuated by cytokines and oxidative/nitrosative stress. Regardless of the initial injury or […]
By Susan McKinstery in Huffpost. I was born in 1981, the year declared “International Year of Persons with Disabilities” by the UN. It heralded the beginning of the “Decade for Persons with Disabilities”, which saw the beginning of what would go on to become landmark equalities legislation and political policy making. The intention for […]
By Cort Johnson in Health Rising. It’s the simplest of medical tests. The erythrocyte sedimentation rate (ESR or SED rate) test simply measures the rate at which the red blood cells in whole blood descend in a test tube over a period of one hour. This non-specific measure of inflammation works because, during an inflammatory process, […]
By Oliver van Hecke in The Conversation. GPs in the UK carry out over 300m patient consultations every year and at least a quarter of these deal with children. Almost two-thirds of such appointments are for coughs, sore throats, or earaches – illnesses which young children commonly get. Doctors and nurses group these types of illnesses […]
From the Mummying And M.E. Blog. NB: This is just my experience of an M.E. crash. This description is not going to be the same for everyone. My daughter is talking to me this morning, but I don’t understand what she’s saying. My husband has been doing the washing up downstairs, opening […]
From Lorem Ipsum Life When I was a kid I thought quicksand was going to be a much bigger problem.* Weirdly, as inaccurate as the movie depictions were of quicksand, they make an excellent analogy for activity and ME. TV and movies taught me that if I fall into quicksand, the worst thing I could […]
By Heather Lacey in AccessAble. As the world becomes more and more connected, we are increasingly fortunate to have the potential to explore more of what the UK’s towns and cities have to offer. Getting out and about to enjoy the activities and attractions that our Towns and Cities have can be […]
From the Mummying And Me Blog. Want to know what a day in the life of a chronic fatigue blogger looks like? Here I will try to sum up what my days look like during the week. Why did I choose to write this article? When I’ve spoken to friends and family about […]
By Jo Moss in A Journey Through The Fog. Pain and fatigue are probably the two most common symptoms across a whole host of medical conditions. It is estimated that around 43% of people in the UK experience chronic pain – this equates to 28 million in the UK alone. In the […]
From A Life Hidden. The third and final part of a series analysing the British Association of CFS/ME (BACME) guidelines on severe ME. I have chosen to write extensively on this subject, as the guidelines encompass several themes that are important to me. The BACME guidelines support the biopsychosocial (BPS) model of ME, which […]
By Wendy Boutilier in Global Advocates 4 Myalgic Encephalomyelitis. Dr. Byron Marshall Hyde studied pre-medicine in the Faculty of Medicine, University of Toronto followed by a degree in Chemistry and Nutrition in 1961. His first medical employment was as an immunological research chemist at the Roscoe B. Jackson Laboratory, Bar Harbor, Maine – a leading […]
By Jo Moss in A Journey Through The Fog. “Life is not a competition. Life is about helping and inspiring others so we can each reach our potential.” Does anyone else feel like they have to bite their tongue a lot? Do you hide a lot of what you are feeling because confrontations […]
By Cort Johnson in Health Rising. Pain – A Surprisingly Complex Experience Pain seems pretty elementary – it hurts! When it really hurts, you want to throw yourself out of your skin. It’s actually not so simple. Pain is often described as a complex, “biopsychosocial phenomenon“. The International Association for the Study […]
By Claire Brumback in The Mighty. “Why doesn’t anyone believe me?” I ask myself this question too often. I have chronic pain and suffer with it every day, but no one believes me. On days I can’t get out of bed, or days I go to the ER because the pain is unbearable, […]
From How To Get On. Doctor Lapp is a well-respected and much-beloved doctor in North Carolina who specialized in ME and CFS who is excellent at documenting this condition. Sadly, Doctor Lapp is now retiring and no longer accepting new patients. Happily, one of his patients was kind enough to share her […]
By Karen Teber in Georgetown University Medical Center News. Gulf War Illness (GWI) and chronic fatigue syndrome (CFS) share symptoms of disabling fatigue, pain, systemic hyperalgesia (tenderness), negative emotion, sleep and cognitive dysfunction that are made worse after mild exertion (postexertional malaise). Now, neuroscientists at Georgetown University Medical Center have evidence, derived […]
By Toni Bernhard J.D. in Turning Straw Into Gold. Part of living day-to-day with chronic illness (which includes chronic pain) is learning to cope with a flare in symptoms. Even though my parade of symptoms tend to be relentlessly the same, at times they flare and can even feel out of control. Here are […]
By Cort Johnson in Health Rising. I met Dr. Chheda of the Center for Complex Diseases at Ron Davis’s Working Group Meetings funded by the Open Medicine Foundation. She graciously agreed to talk more about how she approaches treating ME/CFS in her practice. I was particularly eager to talk to one of the younger […]
By Jo Moss in A Journey Through The Fog. I have a hospital appointment coming up. It’s for a painless, straightforward heart scan (Echocardiogram) as a follow-up to my recent heart problems. Now this would be a simple activity for a healthy, able-bodied person but for someone with a disabling chronic illness like […]
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The first Monday of each month at 11 am - The York ME Community Coffee Club at Bar Convent, 17 Blossom Street, York. There is parking available just around the corner at Nunnery Lane Car Park. Blue Badge holders can park for free.
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The third Wednesday of each month - at 2 pm - The York ME Community Coffee Club at The Novotel, York. Parking is free at the hotel.
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Weekly - Every Wed, 8 pm - 9 pm on Twitter, ME Awareness Hour using the #MEAwarenesshour hashtag.
The 15th Invest in ME Research International ME Conference 2020 - IIMEC15 - will take place on 30th May 2020 in London.
15 years of researchers, clinicians and patients interacting.
More details of the conference day will be announced in the coming months. It will be preceded by the 10th Invest in ME Research International Biomedical Research into ME Colloquium - BRMEC10 - a two day closed researchers' meeting with researchers from around the word, and the third year of a full day Thinking the Future - Young/ECR Conference for young and early career investigators.
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:
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."
The aim is to share ideas in promoting various disability services, whilst continuing to raise Awareness of ME through both organisations. Through their #Think Access group and our own group, The York Access and Mobility Club, we will be looking at accessibility issues in the York & Harrogate areas, with the aim of advising on suggestions for change.
Disability Action Yorkshire aim to find solutions for disabled people whatever their aspirations. Whether you are a disabled person or support someone who is, they are here to support you. They provide a range of services, from training to accommodation and help with independence, among others. To find out more about Disability Action Yorkshire, click on the link below:
As we all know, especially those who need Wheelchairs or Mobility Scooters to get around, vehicles parking on pavements and blocking our way can have a major effect on our lives. It can mean that we are likely to put ourselves in danger by going onto busy roads because of inconsiderate parking. 
If you live in Fulford York, the details of your local PCSO are below, and he should be contacted in the first instance. If he is not on duty, you may be dealt with by whoever is on duty. If you live in other areas of York, ring 101 and ask for the PCSO covering your area. In all cases, you will be required to give as much information about the vehicle and location as possible. You will NOT need to stay by the vehicle till the police arrive.
Simon Hall
PCSO 5648
North NPT
NORTH YORKSHIRE POLICE
Dial 101, press option 2 and ask for him by his full name or collar number
If using his collar number please state each number individually
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.
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:
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.
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.
![old-telephone[1]](http://www.york-me-community.org/wp-content/uploads/2015/10/old-telephone1-300x240.jpg)
Accessibility
Dial & Ride: 01904 551441
Shopmobility: 01904 679222
York Wheels: 01904 630080
Helplines
NHS Health Enquiries (non emergency): 111
Samaritans: 01904 655888
York Hospital: 01904 631313
Patient Transport Service: 01904 630080
Benefits Service: 01904 551556
Local MP's
York Central Rachel Maskell: 01904 784847
York Outer Julian Sturdy: 01904 784847
Thirsk & Malton Kevin Hollinrake: 01347 666880
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 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.
The York Access and Mobility Club is a Facebook group which is aimed at improving Accessibility in York for those trying to get around with a Disability. Feedback on bad, and good Accessibility of shops, streets, cafes, restaurants and any other facilities are welcomed.
It's also the place to discuss mobility aids from walking sticks to scooters. If this sounds like a group for you, you're most welcome !
This is open to any business, club, pub, or organisation looking to have a bit of fun whilst supporting your local community. Our 4th season is well under way and going great guns ! Although the aim is spreading ME Awareness, as a bonus we have also raised over £920.00 for Invest in ME Research, so why not join us ?
To join in for next season, click on the tab at the top of the site for more information, or just to register your interest through the email address supplied.
To read the ME Research Summary 2019 by ME Action covering the last ten years, click on the link below:
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 |
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.
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 !
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
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. I will be aiming to keep up the pressure to ensure future support.
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.
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.
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:
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:
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.