By David Tuller, DrPH The recent Reuters article about the illness, or cluster of illnesses, variously called CFS, ME, CFS/ME and ME/CFS was problematic for many reasons. One of them was the information included from the US Centers for Disease Control and Prevention. In explaining why the CDC dropped its longstanding recommendations for […]
By Gabby Klein in Relating to ME. Fake Media Attacks on #PwME In the past week, there has been a media onslaught of biased and stinging articles maligning 17 million disabled men, women and children worldwide who suffer from the acquired neurological and immunological disease myalgic encephalomyelitis (ME). The false media stories about the […]
By Veronica Vivona in The Mighty. Many of those with chronic illness may be used to saying they’re “good” or “fine” when it comes to how they’re feeling. It doesn’t always mean they’re actually good or fine though. It might just be what they’re portraying to the world. They may do this for a variety of […]
By Anna Riley in Hull Live. A Hull mum has spoken of her battle with a health condition people believed she did not have. Nicola Meekin, 39, from Hull, became ill nine years ago when she started suffering from a bad chest infection. But instead of getting better, her sickness worsened. To Mrs Meekin, it felt like […]
By Anthea Rowan in The South China Morning Post. Twenty million people suffer from myalgic encephalomyelitis, yet there is still no test for it, nor any approved treatment. We talk to a mother whose daughter has the illness, and who has consulted dozens of doctors in search of help. Until my friend Caroline introduced me […]
From NHS Choices. The type of medicines that you need to treat your pain depend on what type of pain you have. For pain associated with inflammation, such as back pain or headaches, paracetamol and anti-inflammatory painkillers work best. If the pain is caused by sensitive or damaged nerves, as is the case with shingles or sciatica, it’s usually treated with tablets that […]
by Sasha Nimmo Researchers at the Murdoch Children’s Research Institute in Melbourne confirmed that paediatric chronic fatigue syndrome (Fukuda criteria) causes significant disability and little is known about how common the condition is or how it is currently managed in Australia. More than half of children have to wait a year or longer before […]
By Tanya Marlow in The Spectator. Imagine you’re diagnosed with epilepsy: what would you think if you weren’t referred to a specialist but taken to a psychiatrist to treat you for your ‘false illness beliefs’? This is what happens to Myalgic Encephalomyelitis (ME) patients in the UK. They are told to ignore their symptoms, […]
By Abby Pickus in DEPAUL Magazine. In 1980, a high school English teacher from Wisconsin named Pat Fero went on a trip to England. Healthy and in her 30s, she noticed something was very wrong toward the end of the trip. “We were in this beautiful countryside, and we went to climb a hill […]
By Jody Smith in Pheonix Rising. Oh, how I love music! This magic can lift our spirits and calm our weary minds. Maybe it can even help us heal. Goodness knows, we who live with ME/CFS need these things. We’re probably not getting much of this elsewhere. So if music is so good for […]
Millions Missing Tommy missing from the five a sides A different postman today Jenny not out, not seen her about Maybe she’s just gone away No Mary at the Bingo Charlie, where is that guy? Rang the teacher, couldn’t reach her Didn’t wonder why Jack from the pub Hayley down at the club That […]
By Jack Croxall in Allies Everywhere. Growing up in rural England I was obsessed with the outdoors. Bug hunting, fossil collecting, and pond dipping were what I spent most of my time doing. But, during my time at university (living in the city of Nottingham and then in London), there wasn’t as […]
From Anil van der Zee in Capture. Dance. Words. For years I’d dreamed of backpacking through Europe, of seeing the Eiffel Tower and the Mona Lisa and the Roman Colosseum. This summer at the age of 28 I finally got to achieve that. But in the shadow of the monuments, many of the […]
From Invest In ME Research. Following excellent work by European ME Alliance-Denmark member Dansk ME Foreningen, and work and input by those such as European ME Clinicians Council member Dr Jesper Mehlsen, there is now unified support in the Danish parliament for separating ME G93.3 from Functional Disorders and acknowledgment […]
From ME Advocacy. Advocating in the United States for the disease myalgic encephalomyelitis (ME) has reached a new challenge that threatens the very core of the recognition for the disease. While some advocacy organizations have diverged and taken the alarming path of partnering with the US Health and Human Services (HHS) in adopting, […]
By Alicia Thompson in The Mighty. It never ceases to frustrate me to realize how pervasive the “Just Do It” culture is. Whenever I discuss my physical limitations with others, I’m often met with the suggestion that I simply need to “push through.” Which leaves me wondering, what does this phrase really mean […]
From Cornell Research. A million or more people in the United States suffer from myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), but remarkably little is known about the cause of the disease, and effective therapies are lacking. ME/CFS is characterized by debilitating fatigue that is not relieved by […]
From #MEAction. Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. It often follows an infection and leaves 75% of those affected unable to work and 25% homebound are bedridden. An estimated 15-30 million […]
By Jonathan R. Kelly in Frontiers in Pediatrics. Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a chronic multisystem disease characterized by a variety of symptoms, and exhibits various features of an autoimmune-like disease. Subtypes are well recognized but to date are difficult to identify objectively. The disease may be triggered by infection […]
THE BANK OF ME In life you live within your means You save to manage all your dreams Paying back any debts you owe Trying to keep your spending low Then life hits us with ME It sets our fogged minds racing How to cope, our only hope To save our strength […]
By Saidee Wynn in The Mighty. In the TV show “Golden Girls,” a two-part episode titled “Sick and Tired” depicts the character of Dorothy, played by Bea Arthur, approaching a doctor while out at a restaurant. This doctor had earlier dismissed her symptoms as being all in her head and sent her on […]
There’s been a huge step forward for ME in the US. Kaiser Permanente is the largest managed care organisation in the U.S. It’s a forward-thinking organisation with a great reputation – which has got everything wrong about ME/CFS – until now. This article explains how Kaiser Permanente are out to change the way […]
From Science For ME. News – events this coming week ME/CFS International Research Symposium 12th – 15th March, Australia. Many well known ME researchers will be speaking. Emerge has announced that most of the program will be available to watch live and will be available afterwards. No pre-registration is required to watch online. […]
By David Tuller, DrPH. Update (later on March 4): Because Royal United Hospitals Bath suggested that I “redirect” my request for documents back to Bristol University, that’s what I did. Earlier today, I sent an e-mail to Bristol’s director of legal services. Here’s what I wrote: As you likely remember, I have […]
By John Pring in Disability News Service. One of Britain’s greatest Paralympians has told a parliamentary meeting to beware of claims that London 2012 “changed the world” for disabled people. Baroness [Tanni] Grey-Thompson (pictured) was speaking at a parliamentary meeting held to discuss the need for more to be done to enable disabled […]
By Diane O’Leary in BMJ Blogs. Professional and public debate about myalgic encephalomyelitis/chronic fatigue syndrome(ME/CFS) has reached a new pitch. A London Times article in August described the “acrimonious scientific row” that’s erupted in the UK now that the US Institute of Medicine, National Institutes of Health, and Centers for Disease Control insist that ME/CFS is not a psychosomatic […]
From Blue Mountain Gazette. The reason for fatigue can be difficult to pin down, be it due to an underlying illness, a mental health issue, or a new baby in the house. But fatigue is more than just tiredness. Chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME) commonly affects the nervous, gut, […]
By Julie Holliday in ProHealth. There is nothing in our once healthy previous lives that can prepare us for what’s involved in getting good at pacing––at least in the way that the very limited energy of illnesses like ME/CFS, Fibromyalgia and Lyme disease demands. Pacing to someone healthy, might mean something like keeping […]
By David Tuller, DrPH. Boy, it’s hard to keep up with all the stupid studies coming out! But that’s no reason not to take a look at a couple of them. (In both cases, I’m just making a few comments. Much more could be said about each of these studies. You can read […]
![_48212010_stickbbc[1]](http://www.york-me-community.org/wp-content/uploads/2015/09/48212010_stickbbc1-150x150.jpg)
By Kit O’Connell in Approximately 8,000 Words Blog. I thought I’d write for a moment about what it means to use a cane as a person with an invisible disability (fibromyalgia). Invisible disabilities are life-altering health conditions which are nonetheless not always visible to a normal observer. Even a trained medical professional might miss […]
By Alexis Redenbach in The Mighty. We’ve all seen the movies: the patient stoically braves the struggles of treatment and only gets angry one time, in a huge but righteous burst of frustration. The person in a traumatic accident is told they will never walk again but by sheer force of will, they somehow […]
By Luke John Smith in The Express. MOTORISTS in the UK are required to inform the DVLA about a number of medical conditions as they could affect the way you drive and you could be fined £1,000 if you fail to do so. Motorists could receive a fine of up to £1,000 for […]
From Syndrome A. To recap from the previous blog post “Part I: Blood Flow in Sepsis & ME/CFS”, ME/CFS looks like a lot like sepsis and sepsis is an inflammatory illness of blood vessels. The blood vessel problems in sepsis interfere with oxygen delivery to cells. The particular kind of blood flow problem that you find in […]
From Alannah Jayne’s Blog. Fatigue is a not so funny, funny thing. You go to sleep, you wake up and still feel as if you could sleep but your mind is wide awake yet at the same time giving you brain fog – a term in which is used to describe the inability to […]
By Adrienne Dellwo in Very Well Health. Allodynia is a rare type of pain, generally on the skin, that’s caused by something that wouldn’t normally cause pain. This pain type is frequently associated with fibromyalgia, and some people with chronic fatigue syndrome have it as well. Other conditions associated with allodynia include neuropathy, postherpetic neuralgia (shingles), and migraines. Outside of these conditions, […]
By John Pring in Disability News Service. Activists have told a UN committee how the UK government is failing to address the significant barriers and human rights violations faced by disabled women in accessing social security, justice, jobs and health services. Eleanor Lisney and Rachel O’Brien, from the disabled women’s collective Sisters of Frida, were […]
From Syndrome A. When I first got sick with ME/CFS, I was a teenager. I was quite baffled when I suddenly became too exhausted to make it to classes, stopped sleeping almost entirely and started sweating profusely. I sweat raindrops: huge drops of sweat rolled down my sides constantly. No antiperspirant was a match […]
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Sun 28 Apr 2019 - The York Inset Scooter Club will be setting off on their annual Mods and Rockers Charity Ride Out from Clifford's Tower in York to the coast in aid of The York ME Community. Departure time is 10.30 am. Why not come a long to wave them off with us ?
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Mon 6 May 2019 at 11 am - The York ME Community Coffee Club at Bar Convent, 17 Blossom Street, York.
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6 - 12 May 2019 #Missing Millions Events around the country.
For Birmingham, on Friday 10 May, 12 noon to 4pm, at St Philip's Cathedral.
For Leeds, on 11 May, full details can be found by clicking on the link below:
Link to Missing Millions Event in Leeds
For Bristol, 11 May, contact : BristolMissingMillions@gmail.com.
For Liverpool 11 May, contact ask@alishawitham.com
For Norwich 11 May, 11.00 am by McDonald's and NEXT.
For Durham, 11 May, 11.30 am to 3 pm in Durham City Market Place. Info at: www.menortheast.org
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12 May 2019 (but may be for the week around that date)
Clifford's Tower and city walls in York will be lit in blue for ME Awareness.
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To get involved in Nottingham on 12 May, contact: meshnottingham@gmail.com.
For Southampton on 12 May, MillionsMissingSouthampton@gmail.com.
For Glasgow 12 May, starts at 2 pm at George Square.
For London 12 May, starts at 12.30 pm, ends 2.30 pm, St John's, Waterloo Road, SE1 8TY.
For Hebden Bridge on 12 May, starts at 12.00 pm.
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Wed 15 May 2019 - at 2 pm - The York ME Community Coffee Club at Novotel York.
Sunday 19 May 2019 - #22 - Riga (Latvia)
Mike Harley's EU Marathons for Invest in ME Research
Link to Mike's Website For More Information
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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.
STOP PRESS: FULL DEBATE TO BE HELD IN PARLIAMENT ON THURSDAY 24TH JANUARY 2019
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:
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 have agreed to support The York ME Community.
They will head off from The York Eye (Clifford’s Tower) on Sun 28 Apr on a run out to the coast, and be set off by the Mayor of York and the York Normandy Veterans. They aim to depart at 10.30 am. Why not come along and wave them off with us ?
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.
Last season was a great success with 15 teams involved, and this season is going brilliantly with the aim of spreading ME Awareness. As a bonus, we have also raised £725.00 for Invest in ME Research.
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 join in for next season and help raise ME Awareness in your local area, have a look at the tab at the top of the site for more information.
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, 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:
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…)
