From The Quadram Institute. UK Charity Invest in ME Research is pledging £500,000 for continued research into the disease myalgic encephalomyelitis (ME or ME/CFS) in Norwich Research Park, UK (NRP). This major investment builds on the foundations already made for a UK/European Centre of Excellence for ME research hub in Norwich Research Park. The […]
From ME Action. So I’ve been doing this fundraiser, where I try to get 1000 body weight reps done in half an hour every day to raise money for #meaction. It’s been a test for me in listening to my body, and knowing when to slow down, rest, or even skip a day. And it […]
From ME Advocacy. It has been 50 years since the World Health Organization classified myalgic encephalomyelitis (ME) as a neurological disease in 1969. Thirty plus years of misinformation about the harsh reality ME patients face has led to a crisis of grossly inadequate patient care. For decades patients have dealt with doctors […]
The York ME Community runs an Inter-Company Fantasy Football League sponsored by TGA Mobility. This is to help raise awareness of the illness that affects around 250,000 people in the UK, and 800 in the York area alone. Of those around York, 200 are likely to be severe, meaning house or bed bound. […]
By Cort Johnson in Health Rising. The National Institutes of Health (NIH), with its pitiful funding, has been a thorn in the ME/CFS community’s side for decades. For decades advocates have thrown everything they could – heartbreaking stories, demonstrations, insults – at the NIH in vain. Even the much acclaimed 2015 […]
From: Canadian Institutes of Health Research MONTRÉAL, August 22, 2019 – It is estimated that more than 580,000 Canadians live with myalgic encephalomyelitis (ME), formerly known as chronic fatigue syndrome, or ME/CFS. This poorly understood, multi-system disease is debilitating and can strike individuals of all backgrounds and at any age. Patients experience symptoms including unrelenting exhaustion […]
By Georgina & Phoebe in Let’s Do It for Myalgic Encephalomyelitis. Even a live Second World War grenade couldn’t stop us! On Sunday the 28th of July we began our quest to conquer a 25 mile kayak to raise money for Invest In ME Research. This journey consisted of a very early start, […]
Invest in ME Research is an independent UK charity campaigning for and facilitating biomedical research into myalgic encephalomyelitis (ME). More details of the charity are here. Clinical trial at Quadram At the IIMEC14 international conference in London in May Professor Simon Carding from Quadram Institute announced the intention to conduct a clinical trial for ME in Norwich […]
The York ME Community runs an Inter-Company Fantasy Football League sponsored by TGA Mobility. This is to help raise awareness of the illness that affects around 250,000 people in the UK, and 800 in the York area alone. Of those around York, 200 are likely to be severe, meaning house or bed bound. On the […]
By Ryan Prior CNN. (CNN)Multiple times a day, every day, Ron Davis sits with his head bowed, waiting outside his son’s bedroom for a subtle signal that it’s all right to come in. He opens the door to the space where Whitney has spent most of the last decade. Whitney lies motionless […]
By Jac Creedon in ME Australia. Since 2015, Adelaide Oval in South Australia has been lit up in blue in recognition of ME Awareness. This year, it will be illuminated on Thursday May 9. It has been organised every year by Jac Creedon, who has had ME for 28 years. Jac lives […]
From Invest in ME Research. IIMEC14 is the fourteenth annual international ME conference that the charity has organised in London. For many of those years the charity often communicated with a patient/advocate in Sweden – someone we are proud to have called our friend. Anne Örtegren passed away in January 2018. […]
From ME Research UK. Cara Tomas and colleagues from Newcastle University have recently published a report on mitochondrial function in ME/CFS, and this study is related to research on muscle fatigue they are currently pursuing with support from ME Research UK. The mitochondria are considered the power plants of the body, generating the energy needed to […]
By Mike Harley. After 6 months since Sofia, I arrived in Cyprus for number 20 after 60 training runs and 400 miles of winter training to kick off year 5 and the first of six marathons in 2019. Heading into the race I’d run my fastest ever Half Marathon (1 hr 40 in Gloucester) and raised […]
By Jennie Spotila in Occupy M.E. There is no question that NIH’s funding of ME/CFS research has been minuscule relative to the size of the public health crisis. Review of ME/CFS grant applications at NIH has drawn scrutiny from the public as one contributing factor. The public perception is that the grant review panelists […]
Good luck to Mike Harley who is running 28 Marathons across Europe to raise Awareness and funds for Invest In ME Research. On Sunday the 17th of March he will be running the Cyprus Marathon. As always, a huge thanks from everyone in The York ME Community Mike ! See the tab […]
Question by Frank Field MP. Chronic Fatigue Syndrome: Medical Treatments. 218214 To ask the Secretary of State for Health and Social Care, what steps his Department is taking in response to the resolution of the House of 24 January 2019 on appropriate ME treatment. Answer by Steve Brine: The Government is investing over £1.7 […]
A Date For Your Diary – York Inset Scooter Club Ride Out In Aid Of The York ME Community ! So now we know the date of the event, will you come and join us to see them off ? All money raised will go to help raising awareness of ME in York through the […]
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. […]
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 […]
Today is a huge day for those of us dealing with ME. Carol Monaghan MP will be making our case for improved medical education and research funding in this illness. Although these figures are now probably out of date and on the low side, it’s estimated that there are 250,000 in the UK, […]
By JENNIFER SPOTILA in statnews.com. When I first developed myalgic encephalomyelitis in 1994, I had no idea that I would be just as sick 25 years later, or that there would still be limited scientific understanding of the disease and no effective treatments. Nor did I imagine that my career as a lawyer was over, and […]
From Solve ME/CFS Initiative. Solve ME/CFS Initiative (SMCI) is pleased to announce that we have received funding to support additional Ramsay studies for the 2018 Ramsay Award Program Class that will be led by Dawei Li, PhD, an Assistant Professor at the University of Vermont, and Malav Trivedi, PhD, an Assistant Professor at Nova Southeastern University. Both Dr. Li […]
The York ME Community runs an Inter-Company Fantasy Football League sponsored by TGA Mobility. This is to help raise awareness of the illness that affects around 250,000 people in the UK, and 800 in the York area alone. Of those around York, 200 are likely to be severe, meaning house or bed bound. On […]
By Rachel Black in The Batema Horne Center. Bateman Horne Center is guided by a board of directors that is intimately connected to ME/CFS and FM. Many have sons, daughters or are themselves managing an illness that has taken much of their life away. The Horne in Bateman Horne Most of you know that our […]
By Mike Harley. Just 5 weeks after Tallinn, I travelled to Sofia in Bulgaria to run their city marathon for number 19 of 28. With Cat 38 weeks pregnant I had expected to be going solo but one of my good mates, Mike Ward, volunteered to come with me. I tried hard to find a […]
By Cort Johnson in Health Rising. “I think some people are angry for good reason. This disease hasn’t gotten enough attention.” Vicky Whittemore My partner and I made our way to Vicky Whittemore’s office in a building off the NIH campus. Security was tight as always. We signed in and were […]
From Invest in ME Research. Invest in ME Research has secured FIFTEEN places in the London Royal Parks Half Marathon on Sunday 14th October 2018 and some are still available. If anyone you know may be willing and able to join Team IiMER 2018 in this event then details are at: investinme.org/IIMER-Newslet-1801-02.shtml This will be […]
By Cort Johnson. In May the Open Medicine Foundation announced they’d committed a major chunk of change – $1.8 million – to fund an ME/CFS Collaborative Research Center at Harvard Medical School affiliated hospitals. With the addition of the Harvard Center, chronic fatigue syndrome (ME/CFS) research centers are now found at two of […]
By Aaron E. Carroll in The New York Times. The medical research grant system in the United States, run through the National Institutes of Health, is intended to fund work that spurs innovation and fosters research careers. In many ways, it may be failing. It has been getting harder for researchers to obtain grant support. A […]
From Mirage News. Emerge Australia, the national organisation providing support, information and advocacy for people with Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS), has received $370,000 in Federal funding to support its work. It is the largest Federal funding that has been committed to a support organisation working in the ME/CFS space. CEO […]
This page is for the researchers funded by IiMER to communicate what they are doing, what experiences they have, what they think of research into ME, what they hope to achieve – and allow more communication with patients and the public. We hope this will help more people understand ME and the possibilities and […]
Below is a link to an application put forward today in Parliament to have ME debated in the main chamber. This was put forward by Carol Monaghan MP, and supported by York MP’s, Julian Sturdy and Rachael Maskell. Link to Parliamentary Application
There are so many questions banded about as to the story of Myalgic Encephalomyelitis (ME), but this video gives a better and fuller insight than most. Once you've watched it, please copy the link and spread the word to raise awareness. Thank you.
To watch this video, click on the link below:
To go to the Government's Disability Benefits Advice Guide, click on the link below:
MEpedia is a project founded by MEAction, powered by the patient community, and built by volunteers including patients, students, and researchers. We are crowd-sourcing a knowledge base on the history, science and medicine of ME, CFS, and related diseases. Jump in by clicking on the link below:
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.
We are a group of physiotherapists in the United Kingdom with a special interest in Myalgic Encephalomyelitis (ME).
Our website provides resources for physiotherapists, people with ME and parents or carers of those with ME.
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.
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.
This is open to any organisation looking to have a bit of fun whilst supporting your local community. Our 4th season is pretty much done ! 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 Fantasy Football League tab at the top of the site for more information, or just to register your interest through the email address supplied.
![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
If you are a member of the elderly community or indeed somebody caring for an elderly person, this guide supplied by Covonia will give you important information on how to avoid getting sick, and how to care for coughs and colds should they happen.
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 Group 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
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 !
