By Veronica Vivona in The Mighty. Living with constant pain can be extremely frustrating. When you don’t feel comfortable, you might develop some habits designed to make things more manageable. You might have back pain that makes it hard to sit in certain chairs. You could potentially have widespread pain that makes it difficult to […]
By Bree Hogan in The Mighty. I can walk, but I can’t walk very far, and it’s always with pain and fatigue. I can stand, just not for very long. I use a mobility scooter — a small version of an electric wheelchair — and walking sticks. Limited as my mobility is, I’m still made […]
By Kalee Oravec in The Mighty. I’ve been sick my whole life. I’ve never been able to keep up with my friends because of fatigue, and my pain interfered with all of my past hobbies. You might think I’m used to it by now, but I’m not. No, it still sucks. A lot. It sucks because I […]
By Tiffany Early in The Mighty. My husband and I had a conversation about how others perceive my illness the other day. It wasn’t a confrontational conversation — it was more the random musings that happen when you’re waiting for dinner to come out of the oven. Joe mentioned that a mutual friend had once […]
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 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, […]
By Heidi in The Mighty. Whenever I am scrolling through chronic illness forums online, I usually come across posts about mobility aids. Having postural orthostatic tachycardia syndrome, or POTS, I understand what it feels like to use mobility aids in public without an obvious physical disability. “But you don’t look sick.” “Are you […]
By Siobhain Simper in The Mighty. As you may be aware, living with a debilitating chronic illness is no fun: the challenges thrown at you by a disease which dictates your every move can be overwhelming. But today, I’m choosing to celebrate the bright side. By putting a positive spin on […]
By Sally Doherty in The Mighty. I’ve had some of those awful days recently (they happen now and then, and more often than I’d like). You know the type: days when instead of your bed being somewhere that you go to rest, your bed becomes a prison that you can barely get out of. […]
By Britt Renee in The Mighty. It seems like getting familiar with loneliness is inherent in living the chronic illness life. This loneliness doesn’t come from being literally and physically alone, though I’m learning there is a decent amount of “alone time” one has to learn to appreciate when being chronically ill. […]
By Renee Fabian in The Mighty. If you’ve been diagnosed with a chronic illness and experienced trauma, you may have some uneasy feelings about the connection between the two. After all, some doctors who don’t really understand tricky conditions like fibromyalgia or myalgic encephalomyelitis (ME/CFS), for example, might be quick to tell you your symptoms are […]
By Sarah Mariann Martland in The Mighty. This is a love letter to all those for whom showering is repeatedly a laborious exercise, physically, emotionally or both. To those who spend days putting it off because you know just how exhausting or painful it feels, right down to your bones, just to stand under the […]
By Asa Lovell in The Mighty. No one prepares you for the grief and feelings of inadequacy you get when you have chronic illnesses. They make such a huge impact on your life that they derail you, stop you from achieving the things you’re working for in the time you’d planned. You […]
By Sophie Cooklynne in The Mighty. Downstairs, my two-year-old son, Lucas, is playing. He’s a beautiful, clever and sweet little boy who lights up my entire world. Upstairs, I lie in a single bed, trapped in the shell of a body; bedridden permanently and suffering dozens of symptoms that mean that […]
By Laurel Younis in The Mighty. OK, here it – the biggest and most important secret you will need to survive chronic illness. The key to surviving chronic illness is surviving it in any way you can. Now I know what you may be thinking, “Really? Is this seriously the advice you’re giving […]
By Juliana Philippa Kerrest in The Mighty. Something I greatly struggle with are the emotional ups and downs that come with dealing with a chronic illness. I have three chronic conditions that have affected me to varying degrees throughout my life: psychological, neurological, and autoimmune. Most of the time, I handle it relatively well; I […]
By Shell Pettifer in The Mighty. “Chronic fatigue, my arse!” I have a confession to make. I have oftentimes throughout my life internally judged people for being overly dramatic. There, I’ve said it. I am a closet censure. I am guilty of internal eye rolls, doubtful compassion and quite frankly some completely uneducated […]
By Simone DM in The Mighty. When you become ill, all you want is for others to be compassionate and understanding. Yet when you come down with something like ME (myalgic encephalomyelitis), that not even your doctor comprehends, it’s a different story. Others are quick to pass judgement, believing you are somehow causing your […]
By Emma England in The Mighty. One of the most frustrating things about living with CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) is that most of the time, I don’t “look” ill, and so people may not understand the fact that there’s anything wrong with me. CFS/ME falls into the category described as […]
By Erin Migdol in The Mighty. When you have an illness that is invisible, complex and/or difficult to treat, that sometimes translates into challenging experiences with doctors. While there are many kind, compassionate doctors out there who are willing to put in the time to figure out your health issues, unfortunately many in […]
By Michelle Levy in The Mighty. Getting sick is no laughing matter, but it often takes humor to be able to get through the ups and downs of chronic illness. While some of these comics make us laugh out loud in pained affirmation, mostly they raise awareness of chronic illness, and […]
By Lisa Alioto in The Mighty. When I was me… I always greeted you with a smile. I may have tried to say something funny to put a smile on your face and I was always excited about whatever plans we had for the day. When I was me… I worked out. Sweaty, […]
By Chelsea Morris in The Mighty. Balance! How do we achieve it? I think for any human being balance is very difficult. But for those of us with chronic pain and disease it seems to be even harder. I wake up one day and feel actually pretty good. So I want to accomplish more than […]
By Paige Wyant in The Mighty. Music is often a source of comfort and emotional healing. Many people with chronic illness in particular find that certain songs or genres can be powerful in helping distract them from symptoms and cope with all the stresses and frustrations of life with a health condition. For Mighty […]
By Lexie in The Mighty. I just made one of the hardest decisions I’ve ever had to make. Many of you can relate to my story. I’ve seen countless doctors, integrative general practitioners, naturopaths, chiropractors, and specialists over the last few years. When they couldn’t explain my symptoms, they diagnosed me with chronic […]
By Lauren in The Mighty. A “friend” recently said to me, “I may have a guy for you.” She knows I’m single and have been looking for someone special for a while now. We spoke over the phone and she asked, “What do you do? What do you keep busy with? I just […]
By Adele Paul in The Mighty. Imagine the following conversation… Friend: Heard you weren’t feeling well lately? Me: You could say that. Friend: So you’re just tired all the time? Me: Yeah, and a few other things… Friend: Girl, I hear ya. When I got back from Hawaii in January, it took me […]
By Heather Wallace in The Mighty. As someone who has recently moved to a new town and is trying to figure things out and find my groove, I have been out a lot more than I usually am, and I am paying for it. Having fibromyalgia means things are different for me now. Planning on going […]
By Melissa McGlensey in The Mighty. Sensory overload happens when too much sensory stimulus is occurring at once — it can be triggered by a crowded room, a TV turned up too loud, strong aromas, fluorescent lighting — or a hundred other things. It’s often associated with certain diagnoses like autism, sensory processing disorder, chronic fatigue syndrome, fibromyalgia, post-traumatic […]
By Sally Doherty in The Mighty. I’ve had some of those awful days recently (they happen now and then, and more often than I’d like). You know the type: days when instead of your bed being somewhere that you go to rest, your bed becomes a prison that you can barely get out of. […]
By Siobhan Simper in The Mighty. Author’s warning: This post contains experiences of gaslighting and abuse. Recently, I saw an all-too-common meme on social media: the inspirational disabled person. The image was of a Paralympic horse rider, with the caption, “no excuses.” Much has been written about the problematic nature of disability “inspiration porn.” What shocked me was when I […]
By Aanchal Chopra in The Mighty. I have moderate chronic fatigue syndrome (CFS), and this is my own experience. Others may have different symptoms or manifestations because every individual is different. But this is a glimpse into what my life with CFS actually feels like. Living with CFS — or myalgic encephalomyelitis (ME) — is like swimming […]
By Jamie Janinski in The Mighty. Four years ago, I went to my doctor complaining of excessive tiredness and having so much pain in my hands that I couldn’t squeeze my shampoo bottle while showering. Four years ago, I received a call telling me I needed to see a rheumatologist right away because my […]
As has been stated by Dr Sarah Jarvis and others, it’s possible that the Coronavirus could trigger M.E. in those people who get through the worst of the virus, and are seen to be in the recovery phase.
Please do not think that once you’re in that phase that you should just get back to your normal routine. As someone who has just passed his 14th anniversary with ME, the most important thing you can do is rest.
Resting should be from both physical and mental / cognitive activities.
Do not push beyond what your body is telling you. Your head might tell you something different, and you’ll be keen to make up for lost time, but please take advantage of this lockdown to recover properly. If you push beyond your limited energies now, and M.E. follows, it could change your life for years to come.
Be sensible and rest up. Take care.
If you wish to apply for a Blue Badge in the York area, or wish to know if you qualify, click on the link below:
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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:
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.
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
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.
There has since been an All Party Parliamentary Group (APPG) formed to discuss the way ahead in helping MP's Constituents with ME. Contact your MP to ensure they're representing you !
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) is available on Amazon and iTunes and through the Unrest UK Store on DVD and Blu-Ray by clicking on this link: Unrest site
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.
To go to the Government's Disability Benefits Advice Guide, click on the link below:
![old-telephone[1]](http://www.york-me-community.org/wp-content/uploads/2015/10/old-telephone1-300x240.jpg)
Helplines
COVID-19 Helpline for York - 01904 551550
or email: covid19help@york.gov.uk
NHS Health Enquiries (non emergency): 111
Samaritans: 01904 655888
Mind UK: 03001 233 393
Domestic Abuse: 03000 100 110
York Hospital: 01904 631313
Patient Transport Service: 01904 630080
Benefits Service: 01904 551556
Accessibility
Dial & Ride: 01904 551441
Shopmobility: 01904 679222
York Wheels: 01904 630080
Delivery Services
Virtual High St: www.yorkhighstreet.com
Alligator Wholefoods: 01904 654 525
Millie's Greengrocers: 07766 313 122
Food Circle: 07511 717 946
Miller Food Service: 01904 655 368
Poppy Caterers: 01347 878 628
Sheila's Greengrocers: 07470 308 824
M&K Butchers: 01904 639 300
Badger Hill Butchers: 01904 411 897
Burnholme Fisheries: 01904 421 360
Milk (Richard Cann): 07773 348 354
Services
York Electricians Ltd: 01904 373 045
Plumbtech: 07703 567 027
Yorkshire Plumbing: 08006 125 234
Local MP's
York Central Rachel Maskell: 01904 784847
York Outer Julian Sturdy: 01904 784847
Thirsk & Malton Kevin Hollinrake: 01347 666880
Councillor Keith Aspden: 01904 555 314
The Changing Places Consortium launched its campaign in 2006 on behalf of the over 1/4 of a million people who cannot use standard accessible toilets. This includes people with profound and multiple learning disabilities, motor neurone disease, multiple sclerosis, cerebral palsy, as well as older people.
To use the toilet in safety and comfort, many people need to be able to access a Changing Places, which have more space and the right equipment, including a height adjustable changing bench and a hoist.
To find out more, click on the link below to go to the Changing Places website.
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 !
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 likely to be around 800-1,000 people of all ages in the York area with ME who would be so very grateful for your help.
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.
To order the book through Jessica's site, click on the link below:
This book is also now available at York Library
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 !
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 has followed through on their promise by lighting up the city walls and Clifford's Tower in blue over the ME Awareness Weeks since that meeting.
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.
Mike Harley is a very special guy who's aim was to run a marathon in each EU country to raise awareness and funds for Invest in ME Research. Please visit his site to learn more, especially since our exit from the EU has meant a revision of his plans !
