Welcome To The York ME Community

Firstly, let me just say that The York ME Community is not a charity. I will not be asking you to put your hands in your pockets for cash. What I believe we need so much more at the moment is awareness of the illness and for that we need people who are learning about ME and therefore able to tell others. There are ME charities, and if in the future you or your business wish to do a charity run or whatever in aid of ME, I will happily help and support that aim.

Fulford Beer & Music Festival Saturday 22nd June 2019 

Beer

  Fulford Beer & Music Festival Saturday 22nd June 2019 From 2pm to Sunset Fulford Sports Pavilion The Parish Field (off Fulfordgate) YO10 4LY • Over 15 local real ales,  craft lagers and ciders • Live music from local bands • BBQ, snacks and soft drinks Main sponsor: £4* ADVANCE £5* ON DOOR * Includes […]

‘It’s Not Just About Being Tired’ Says Bognor Regis Teenager Who Has ME

alexander-technique-and-cfs-me

  From the Bognor Regis Observer.   “I used to do a lot of walking and family days out, most Sundays we would go on walks to forests and beaches. “I would spend time with friends and have sleepovers. I don’t see my friends any more. I had to leave college. Having no energy every […]

ME/CFS Patients Worldwide Face Scepticism And Ignorance From Doctors

Doctor

  By Jo Moss in A Journey through the fog.   I would like to take the opportunity, for ME awareness month, to talk about the problems ME/CFS patients like myself face getting a diagnosis, and also the general ignorance surrounding ME/CFS within the medical profession. I know not all doctors are bad, but sadly […]

The Struggle To Balance Between Resting And Using Energy When You’re Chronically Sick

Chronic

  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 […]

‘Grief And Confusion Clashed With Unconditional Love And Joy’: The Hidden Lives Of Young Carers

Young-Carers

  By Ellie Fry in The Independent.   Like many young carers, I can’t tell you the exact moment my mum got sick. Nor can I pinpoint the moment I started helping her and my family get through day-to-day life. But there was a moment, 10 years ago, when my mother went from healthy to bed […]

Waterfall Illusion: When You See Still Objects Move – And What It Tells You About Your Brain

brain-power

  By Niia Nikolova and Nick Wade in The Conversation.     Humans are fascinated by visual illusions, which occur when there is a mismatch between the pattern of light that falls on the retina, and what we perceive. Before books, films, and the internet allowed illusions to be shared widely, people were captivated by illusions in nature. Indeed, it is […]

Talk To Me ….But Slowly

Talking

  TALK TO ME….BUT SLOWLY   I used to love the banter Noisy bar room chat Then when the beastly ME hit It put a stop to that   Noise is now my Kryptonite My Achilles’ heel is sound It’s not by choice That the tone of a voice Can knock me to the ground […]

Disabled TV Presenter Abandoned For 45 Minutes On British Airways Flight Forced To Slide Headsets Down Aisles To Get Cabin Crew’s Attention

Disability

  By Sophie Morgan in The Independent.   Television presenter Sophie Morgan is calling on airlines to offer concessions for disabled travellers after she was left without means of moving “short of dragging herself along the floor” on a British Airways flight. Ms Morgan, who was paralysed in a car crash when she was 18 and uses a wheelchair, […]

The Severe ME Bedbound Activity Masterlist: Part 1

Severe ME

  By Sarah Stanton in Medium.   Living with conditions like severe ME is hard. Gold standard health recommendations like sunshine and exercise simply don’t apply to us. And most of the articles out there suggesting activities for bedbound people assume a higher level of functionality than we generally have. With that in mind, here […]

How Online Actions Make The Real World More Accessible

Euan's Guide

  Written by Euan MacDonald MBE, Co-founder, Euan’s Guide.   Everyone knows that technology is making our lives easier – from the mobile phones in our pockets, the handy birthday reminders from a certain social network, to the lifesaving data records held by hospitals. However, something that might not be so obvious to businesses is […]

ME Research Summary

Research

  From ME Action.   Myalgic encephalomyelitis is a complex chronic disease that affects multiple body systems. While funding for research and clinical care remains a serious concern, there is now a growing body of literature that identifies and explicates dysfunction in the immune, neurological, and energy metabolism systems in people with ME. What follows […]

Disney Made Me Question My Disability

Life of Pippa

  From the Life Of Pippa Blog.   This piece was originally written for Scope’s online community, but I never got around to sharing it on my blog. It was this time last year that we were in Disneyland Paris living our very best lives, so here’s something of a throwback… Something I often consider is […]

Trial by Error: A Letter To Bristol about My Recent FOI Request; Update Added

David Tuller

    By David Tuller, DrPH   UPDATE: Within an hour or two of writing to Bristol, I received a response from the university’s director of legal services. Here’s what she wrote: Dear Dr Tuller Thank you for your email. The Information Rights team is making good progress on clearing the back log, your FOI […]

18 Songs That Were Written About Chronic Illness

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    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 […]

Van Gogh’s Paintings Brought To Life At Cutting Edge Exhibition Premiering In York

van_gogh_self_portrait

      From YorkMix.   York St Mary’s will reopen next month – showcasing some of the world’s greatest artworks as you’ve never seen them before. Van Gogh: The Immersive Experience brings the Dutch master’s paintings to life. Huge animated projections allow you to step inside the art. It opens at the Coppergate venue on […]

The Crash That Follows The Push Of ME/CFS And FM Awareness Day

Feeling_Fatigued_and_Drained_Ayurvedic_tips_to_Re-energize_Yourself

  By Jodie Smith in Phoenix Rising.   It’s been about a month since the ME/CFS community pulled out all the stops for our May 12 International ME/CFS and FM Awareness Day. I think we have a great deal to be proud of, and encouraged by. With each passing year this bunch of chronically ill […]

When Illness Makes You Give Up The Commitments And Activities You Love

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  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 […]

Spinal Stenosis, Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia: The Spinal Series #3

johnson_cort

  By Cort Johnson in Health Rising.   The Spinal Series This is part three of a series examining spinal issues which may mimic chronic fatigue syndrome (ME/CFS) and fibromyalgia. The first two in the series involved two very ill ME/CFS patients who have recovered or are recovering following surgery to correct craniocervical instability. Could […]

When People Judge Me For Not Working Because Of My Chronic Pain

ChronicPainManagement

  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 […]

Running On Empty – Do Not Pass “Go”

Empty

  By Sam in the My Medical Musings Blog.     We all have moments in life when we hit a brick wall physically and perhaps mentally. It happens to the healthy and chronically ill alike. I remember in my “healthier” life, I’d get to the end of my working week and I’d be exhausted. […]

As I Age With ME

ME

  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 […]

Inside York’s First Cat Cafe

cats

    From YorkMix. After one false start and a lot of anticipation, York now has its very first cat café. The Cat’s Whiskers opened a few days ago in a listed three-storey building on Goodramgate. Complete with 11 cats, including Freddie and Teddy, Simba, Bear and Snowy and Olaf – who are both deaf – the café […]

The Best Thing I’ve Ever Done: Film Maker With ME Wants To Raise Awareness Of Hidden Illness

Film

  By Lucas Hill-Paul in SW Londoner.   A Herne Hill filmmaker hopes his short film This is ME will bring awareness to those living with a common invisible disability. Josh Pickup, 29, was diagnosed with myalgic encephalomyelitis (ME), which is also known as chronic fatigue syndrome, at the age of 21. ME is among the most […]

Why I Think ‘Chronic Fatigue Syndrome’ Is The Worst Name Ever

Fatigue

    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 […]

DWP Quietly Hands Private Firms £600m Extra To Test Disabled People For Benefits

DWP Caxton House

  By Dan Bloom in The Mirror.   EXCLUSIVE: Atos and Maximus had their PIP and ESA contracts extended for the second time despite accusations they’re running a “failing” welfare system. Now the eye-watering cost to taxpayers can be revealed. Tory ministers are quietly handing private firms an extra £630 million to test sick and […]

Caring For A Son With M.E.

Reflection

  From  Health and Social Care Alliance Scotland.   “My son is too ill to fight his cause but, as his mother, I will give it everything I’ve got” “Do they think it’s all in my head, Mum?”, my son quietly asked me as we left the GP surgery. “I can assure you, son, none of […]

Fit And Active Cardiff Woman Left Bedbound After Developing ME

Darkness

  From ITV News.   For the past year, 28-year-old Natalie Price has been living in darkness and silence. In 2014, she was diagnosed with myalgic encephalomyelitis, commonly known as ME or chronic fatigue syndrome. Sufferers complain of symptoms including extreme tiredness and fatigue, constant pain, extreme headaches and sensitivity to light and sounds. Since […]

2019 Blue Badge Scheme: Everything You Need To Know About The Hidden Disability Changes

access-bluebadge

    By James Kelly in Leasing.com.   The blue badge disabled parking scheme is supposedly undergoing its biggest shake-up since it was introduced in 1970, but what exactly will change, and when? Last year it was revealed that, from 2019, people with hidden disabilities will be granted access to the scheme too. The idea […]

Experience Open Farm Sunday In The Beauty Of The North York Moors

Open Farm Sunday

  From The Yorkshire Times.   Farms across Yorkshire and the UK will be throwing open their gates on 9 June as they welcome the public for Open Farm Sunday. In the North York Moors National Park, Stonebeck Gate Farm at Little Fryup, near Danby, will be giving visitors the opportunity to experience life on […]

Welcome To The June 2019 News Update For York Carers Centre

York Carers Centre

York Carers Centre news Thank You Volunteers It’s National Volunteers Week and we’d like to say a huge thank you to all of our committed volunteers, who generously offer their skills and time to help carers in York. From the board of trustees and office volunteers to those who help carers at groups across the […]

A Mother’s Story: Alem Matthees

Me Australia

  by Helen Donovan in ME Australia.   May 12 is Alem Matthee’s birthday. Around the world, people with ME, their friends, families and scientists are grateful for Alem’s work in getting trial data released, showing that graded exercise therapy and cognitive behavioural therapy did not improve health the way the study’s authors claimed. In […]

York Charity Receives £40,000 In Lottery Funding

charity-fundraising

  From Minster FM News.   Many more people in York will be able to receive vital support and help, after a local charity received lottery funding. York Neighbours, which provides practical help and support to people aged over 65, has received £40,000 a year for the next three years allowing it to expand its […]

Rare Gene Mutations May Be Affecting Energy Levels In ME/CFS

Genetics

  By Cort Johnson in Health Rising.   Dr. Camille Birch has a PhD in biomedical engineering and hails from the Hudson Alpha Institute for Biotechnology at Huntsville, Alabama. Hudson Alpha, only 11 years old, is one of those new biotechnology efforts that’s using sophisticated bioinformatics to understand how our genes affect our health. Dr. […]

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