Chronic Fatigue Syndrome
By Cort Johnson in Health Rising. It seemed ever so clear. The reduction in the number of small nerves in the skin and eyes of roughly forty percent or so of the people with fibromyalgia (FM) and chronic fatigue syndrome (ME/CFS) must bring the body – as opposed to the brain – into […]
By Isabelle Jani-Friend in The Guardian. I was recently on a packed Central line train into London. Luckily, I managed to take the last priority disabled seat. My osteoporosis and the fatigue I experience meant it would be hard for me to stand for the 40-minute journey to Oxford Circus. I felt a […]
By Melissa Cunningham in The Sydney Morning Herald. Anna Kerr often spends up to 22 hours a day in a darkened room unable to get out of bed. Following her first pregnancy, the Thornbury mother-of-two felt something was amiss. At first, it was a newfound reaction to wine and coffee, triggering nausea, weakness […]
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 Mark Smith in Wales Online. Lola Brandrick, 13, from Swansea, is crippled by pain and is constantly exhausted. While all her school mates are out enjoying their summer holidays, poor Lola Brandrick can only dream of joining them. The 13-year-old is confined to her bed, constantly exhausted and crippled by widespread […]
By Naomi Whittingham. Welcome to my blog. The main purpose of this site is to bring together my existing work, but I also hope to add new writing from time to time. I have never blogged before and am looking forward to the freedom of writing as I wish, with full editorial control. (The downside is […]
By Jo Verrent in Unlimited. Unlimited, in its current form, has been recruiting for disabled trainees since 2013. What have we learnt about accessible recruitment? Jo Verrent, Senior Producer for Unlimited, gives us her top ten tips… Target where you advertise – find out where disabled people might be, and go out of your […]
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 […]
From the Life of Pippa Blog. Since I started blogging, there’s one question I’ve consistently been asked more than any other: how I found my flexible, work from home opportunities. If you don’t already know, I split my time between social media management and content creation in the charity sector, self-employment as […]
From the CoffeeSpoonie Blog. There are disabilities we think of as visible, and disabilities we think of as invisible. (Mental illness? Invisible. Quadriplegia? Visible. Autoimmune disease? Invisible. Blindness, with a cane and guide dog? Visible.) Neat little categories that we are expected to sort our disabilities into, to help others understand better when […]
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 John Pring in Disability News Service. More than half of passengers who describe themselves as having an impairment that limits their day-today activity find travelling by air difficult, according to a regulator’s annual report on access at the UK’s major airports. The Civil Aviation Authority’s (CAA) annual report on disability access contains […]
From the How To Get On Blog. We are taught that exercise is supposed to make us feel better. Staying active is supposed to make us healthier. Getting out of bed is supposed to improve our quality of life. Sadly, for people with Myalgic Encephalomyelitis or “Chronic Fatigue Syndrome,” the opposite can […]
By Robert Stack Forbes Councils Member. President Trump kicked off his re-election campaign last month with a list of accomplishments, from the market rebound to unemployment being “the lowest it has been in 51 years.” According to a Society for Human Resource Management (SHRM) article, “With unemployment at a low, fewer people are looking for jobs. Many employers […]
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 Jennifer Brea. I’ve previously written about how a bad mold exposure and my acute, viral onset of myalgic encephalomyelitis (ME) could have directly and indirectly damaged my connective tissue, including the ligaments in my neck, causing craniocervical instability (CCI). A key mediator of that damage might have been mast cell activation and collagen-degrading enzymes. The coup de grâce (and it really was, oddly, […]
By Jo Moss in A Journey Through The Fog. Having a chronic illness means everyday tasks can be challenging, exhausting and painful. But there are steps we can take to make life easier, to limit the stress caused and to conserve our energy for more enjoyable activities. Here are some practical solutions to […]
By Cort Johnson in Health Rising. It took Tony Komaroff over thirty years to get this done but it may have been worth it. Komaroff, Harvard doctor, researcher and ME/CFS advocate, has been studying, writing about and advocating for ME/CFS research since at least 1987 when he was the senior author on […]
By Rochelle Joslyn (PhD) Edited by Allison Ramiller, in Solve ME/CFS Initiative. 2019 is off to a strong start for ME/CFS research! From the search for sensitive and specific biomarkers in neuroimaging and CPET testing, to the use of next generation (RNA) sequencing in transcriptomic analyses of peripheral blood, findings from the first […]
By Rhiannon Williams in iNews. Disability-themed icons, a yawning face and a sloth are among the new characters to be released in honour of World Emoji Day. Apple has previewed a selection of emoji due for release in the autumn, including a range of inclusive disability-themed characters. The reveal coincides with World Emoji Day, an unofficial […]
By Dr. Liz Matheis in The Mighty. As a Psychologist, I am in the business of receiving phone calls from parents worried about their kids with disabilities. During that initial phone call, parents give me a quick run-down of their child’s symptoms, the struggles the family at large is facing, and the specific goals […]
From A Chronic Voice. Chronic illness is a monster consumer of energy, leaving little to spare. Why waste it on unnecessary thoughts and unchangeable circumstances? So I ask myself, “what can I do to make things better? Is there something I’d like to create for myself today? How can I become a […]
By Susanna Agardy, in BMJ Journals. At the heart of Sharpe and Greco’s article lies the complaint that while cancer patients accept CBT/GET treatments for their fatigue, ME/CFS patients reject these treatments. Of course they do! ME/CFS patients have a different disease, the main feature of which makes them unable to increase exertion. The article contains […]
By Adrienne Dellwo in Very Well Health. Because fibromyalgia and chronic fatigue syndromeinvolve the central nervous system, we get all kinds of strange things goings on with our nerves. Along with burning, tingling, numbness, and pinpricks, we can experience itchiness that can be severe and persistent. It’s maddening, especially since scratching doesn’t do a thing to help. For […]
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 Yvonne Roberts in The Guardian. Two years ago the United Nations released the findings of a secret inquiry into state-level violations of the human rights of disabled people. Its conclusion was that a “human catastrophe” was under way. In every sphere, including employment, housing, education and social security, disabled people are hugely disadvantaged. Shamefully, […]
By Serena Coady in The Metro. Ever felt the sting of a backhanded compliment? Perhaps you’ve been told that your English is ‘surprisingly’ good, or that you’re funny… ‘for a woman’. A new Twitter hashtag, #DisabledCompliments, is highlighting that veiled insults are sometimes a daily reality for people with a disability. The viral […]
By James Moore in The Independent. When you’re disabled the phrase “back to earth with a bump” is all too familiar. On Thursday I wrote about what I’d describe as a rare win: the Greater London Authority sent a motion to London mayor Sadiq Khan following my humiliating experience on the tube (I was […]
By Jo Moss in A Journey Through The Fog. Each month a fellow blogger (A Chronic Voice) hosts a ‘Link-up party’. It is a monthly get-together for anyone with a chronic illness. An opportunity to share, to listen, and to learn from one another. It’s a great way to provide insight into life […]
By Samantha Renke in The Metro. Living with a disability in the UK today means living in a state of perpetual fear, feeling unheard, patronised and at times like a burden – and it can take a huge toll on your mental health. I was born with a genetic condition called Osteogenesis Impefecta […]
By Cort Johnson in Simmaron Research. BV has been a virus of interest since almost day one in chronic fatigue syndrome (ME/CFS). In fact, at one point, EBV was such a hot topic that ME/CFS was called for a time “chronic Epstein-Barr virus” disease. While studies have generally failed to find evidence […]
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 James C Coyne. This is an edit of something I wrote in 2016, which I return to read every now and then. Sometimes I tinker with it, like now. I wrote it soon after I first became a professional advocating for patients with chronic fatigue syndrome and myalgic encephalomyelitis, a set […]
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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.
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The third Wednesday of each month - at 2 pm - The York ME Community Coffee Club at The Novotel, 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.
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…)
Last season was a great success with loads of local company teams involved, and this season promises to be even better. With the aim of spreading ME Awareness, as a bonus, we have also raised around £800.00 for Invest in ME Research, so why not join us ?
This is a call out to all York (and beyond) Businesses, Clubs and Venues to join us for next season and support your local ME Community.
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.
The aim of this group is to bring together everyone in York with a need for a little help in getting out and about in our beautiful city.
This includes those who use, or are thinking about using any type of mobility aid, from a simple walking stick, to a wheelchair or mobility scooter. This is where we can share advice, ideas and support on all things mobility, including any ideas that might help us around the house, or out and about.
It will also be where we can raise concerns of accessibility issues in York, and maybe create a strong enough voice to effect the changes needed to help us be a full part in what’s going on and live a fuller life.
We can share names of accessible shops, cafes and venues, as well as those that need to improve if they want to get our custom.
If you know of someone who might like to be a part of this group, please let them know, and let’s all join in with ideas, suggestions and support to those who might need it.
Let’s make York a better place for all of 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.
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: