By Jo Moss in The Mighty. The reason I started writing about my experiences was to raise awareness of invisible illnesses like ME/CFS and fibromyalgia, and to try to reach out to help others who are suffering like myself. I often feel I’m not doing enough to raise awareness, so today’s post is an […]
Tomorrow, 14th February, at 12 noon, BBC Radio Scotland’s John Beattie programme will be interviewing several people about issues around ME. Those being interviewed we have been told, include: – MP Carol Monaghan – who has secured next week’s Parliament debate on the Pace Trial – Janet Sylvester – organiser of the recent Scottish […]
From Invest in ME Research. Background At the 10th Invest in ME International ME Conference 2015. Dr Ian Gibson announced that he was planning on writing a book about ME – and the politics and prejudice which has affected the way that ME is perceived, treated, researched and funded – as well […]
Chronic illness is misrepresented in TV and film, and it damages the lives of people coping with it, writes Naomi Chainey in SBS. I once watched an episode of House M.D. where a man came to the clinic and outlined his symptoms. Familiar symptoms. My symptoms. Having just been diagnosed with one […]
By Russell Logan in Shout Out About ME. As an ME or CFS sufferer, how often have you had someone say to you, ‘we’re all tired, get over it’, or ‘you don’t look sick’? Although the illness is mostly invisible, part of the problem is that some patients aren’t as sick as […]
A Blog by Sally Burch. Some Days! We have all had those days: the days where nothing goes right. Yet, we weather the rough times because we are confident that things will look up again tomorrow. In a similar way most people have experienced a few day’s confinement to bed with a […]
By Adrienne Dellwo in Very Well. When living with fibromyalgia and chronic fatigue syndrome, pacing is key to managing your symptoms. That’s easier said than done with the busy lives most of us lead, but with some effort, you can learn to pace yourself. Why is Pacing Important with Fibromyalgia & Chronic Fatigue […]
The All Party Parliamentary Group (APPG) on M.E. is hosting an awareness-raising drop-in session for MPs in London on Wednesday 11 May from 12.45pm to 2pm. If you’d like your MP attend, get in touch with them now if you can, or get someone well enough to email them. Just Google to find out […]
By By Adrienne Dellwo in About Health. Getting Started With Supplements: Many doctors, researchers and people with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) say nutritional supplements are an important part of managing your symptoms. Many of us swear by them, and some people use supplements as an alternative to medications. However, […]
By Kevin Black in Local People. Caterham based model Joanna Chamberlain has raised over £800 for charity with a spectacular fashion show held in the town’s New Caterham Arms pub. Joanna and Her Vintage Violets was the title of the evening and the theme was the 1940s-50s and was in aid of www.investinme.org a […]
Invest in ME supporters made March another marvellous mixed bag of awareness & fundraising for the charity’s biomedical research funds for myalgic encephalomyelitis. Thank you each & every one! Actor Jon Campling took along his Invest in ME charity collection box to another Comic Con event, this time in Oxford: “Huge Thanx 2 all […]
From meanalysisblogspot.com Scientific analysis and ME psychosocial research: will they ever meet? I get frustrated by the endless recycling of unsubstantiated claims and opinions about ME, and can fully understand why many people get quite angry about it. So I intend to write a short series of blogs looking at the claims […]
As I hope you will know by now, Mike Harley is acting like a crazy man and running a marathon in each EU country in aid of Invest In ME Research. That’s 28 in all, a truly mammoth and marvelous task. In each country he meets up with local ME sufferers and learns a little […]
A Blog by wishfulthinker77 in Totally ME. I fear criticism for writing this post , here goes anyway ….. Last night I attended a Fancy dress party for my Brother in Law , so a place filed with friends & family . All week I was not going to attend but I changed […]
The Spoon Theory. Written by Christine Miserandino. My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time […]
Story by Sasha Nimmo in MEAction. (A view from Australia). Most of the $2.4 million in research the government says is for ME or CFS is spent on research into psychology, exercise or for other conditions such as hepatitis C. No studies funded in a decade. For Australia’s 94,000 people with ME, or possibly […]
Mike Harley is currently part way through his mammoth mission to run a marathon in each EU country, 28 in all, in aid of Invest of ME. Please have a look at his site that covers his running schedule and a whole lot more to boot with regards ME. To connect to Mike’s […]
Before ME hit, I enjoyed running and took part in a number of marathons, running for charity. This is beyond me now and I’m jealous when I see people out there running past my front window ! The Yorkshire Marathon is a very popular event and places will be up for grabs from today and […]
A Blog by Emily Beardall in A Prescription for M.E. This is the 50th blog post since I started my blog in May! My very first post was about some positive M.E. awareness news from Norway, so I’d like to mark the occasion with a blog post about positive campaigning. In M.E. campaigning, we […]
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Story by Nathalie Wright in the Huddersfield Examiner. In this thought provoking first person feature Huddersfield 22-year-old Nathalie Wright reveals how her life has been devastated by the crippling illness ME. Nathalie grew up in Pole Moor above Slaithwaite, went to Wilberlee Primary School, Crossley Heath School in Halifax and then Greenhead […]
Hello! My name’s Barnaby Eaton-Jones, but that’s my problem. I’ve had M.E. since 1991, so that means I’ve been unwell for longer than I’ve been well. This, as you may imagine, is described by me as ‘a bit of an arse’. Which is somewhat of an understatement. So, picture the scene – a young, lithe, […]
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Invest in ME is an organisation of volunteers that does so much for those of us dealing with ME. The link below leads to news on their 11th Annual International Conference due to take place in 2016. Link to Invest In ME Annual Conference news
A story from Medical News Today. In 1988, a group of scientists reviewed a set of mysterious symptoms appearing in previously healthy young adults who succumbed to an unexplained, ongoing fatigue so severe that it disrupted their ordinary life. They named it chronic fatigue syndrome. Although it was not named until 1988, 19th-century physicians were already […]
With the kind permission of James who wrote the Manifesto, the following is the content of a blog by Jan O’Mally, which you might find an interesting read. “This is based on tweets from James David Chapman (@batteredoldbook) with his permission (& my thanks). Please note this is for people with Myalgic Encephalomyelitis, not Chronic […]
Posted on November 7, 2015 by tipsforme To outline the current backdrop to this post, there’s much heated debate for and against the reliability/validity of the PACE trial methodology. The depth and details of this are beyond the scope of this blog post. The PACE Trial was a large study into CFS (ME) comparing standard […]
“Let’s Do It For ME” invited me to do a little piece for their take on Movember for Awareness of men’s health issues, which they’ve put out through Facebook. I hope you don’t mind, but as I made mention of our Community, the coffee morning got a mention, along with your photograph ! The […]
An article in ME Advocacy. Although this is a repost of something written in the lead up to ME Awareness Day last year, I find it interesting to read the US take on ME. Nobody is willing to wrap their tongue around anything that requires 11 syllables. But that is not why Steven Straus […]
I know some of you regard yourselves as Techno Luddites but do any of you use Twitter ? Have family or friends who use Twitter ? As you will know, my big aim is to raise Awareness of ME. Belief will follow, then the funds to cure this beast. Part of what I […]
The inaugural coffee morning, on Tuesday 13 October, was well attended by six lovely members and we had, what I hope was, an enjoyable and informal hour and a half chatting about our ME journey’s, life in general, and hobbies, over coffee (or in my case green tea!). Conversation easily flowed, and we were all just “normal” ladies with one common denominator, but […]
Maybe something we should email to our GPs…… Do you have a keen interest in world-leading translational biomedical research into one of the least understood and most misunderstood diseases? Can you visit Norwich on the evening of 23rd October? Then here is a great opportunity! This meeting is open to doctors and other healthcare professionals, […]
Are you on Twitter ? Would you like to raise Awareness ? Are you ok to go on line between 8pm and 9pm on a Wednesday evening ? This is where you get the chance to talk ME with other like-minded people, hear their views and retweet them to others you would like to get […]
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Hi Everyone Just to let you know that we now have a full event system working. So whether it’s a Coffee Morning or a Slap up xmas lunch (hint, hint) we can now organise it effectively through our site. The Event List at the top of the right hand column has brief details and links […]
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A poem by Bill Clayton about ME, kindly read by Llewellyn King.
Wed 21 Nov at 2 pm - Coffee Club, Novotel York.
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Mon 3 Dec at 11 am - Coffee Club at Bar Convent, 17 Blossom St, York.
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April 2019 (Date tbc) - The York Inset Scooter Club will be setting off on their annual Mods and Rockers Charity Ride Out from York to the coast in aid of The York ME Community.
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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.
Looking after your Accessibility Holiday needs with escorted coach tours with qualified care teams. To find out more, click on the link below:
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:
The Sandbag Times is an Online Magazine written by Veterans for Veterans
which brings you all the latest national and international Armed Forces and Veterans news. With insights each week into Veterans Charities, organisations, events and lots more. It also supports the work being done by The York ME Community.
To keep in touch with all things military, 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 a run out to the coast, and be 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. 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.
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 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, has been released to mark and support ME Awareness Day, 12 May 2018.
It’s 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:
DisabledGo in York provides information on Shopmobility, Talking Signs, Dial & Ride, York Wheels and accessible Public Toilets in our city. To find out more before setting off for York, 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…)