Chronic Fatigue Syndrome
From the Mummying and M.E. Blog. To my wonderful friends and family (you know who you are), I want to attempt to say thank you to you all but also sorry at the same time by writing this open letter. I’m not entirely sure I’ll manage but here goes. For those who haven’t […]
By John Pring in Disability News Service. The three companies that carry out disability benefit assessments for the government have made almost no progress in the last year on alerting local authorities to concerns about claimants whose safety is at risk, according to a disabled campaigner. Last year, freedom of information responses from […]
By Cort Johnson in Health Rising. My, how things change. Less than a month ago, only 70 coronavirus cases had been reported in the country. Our president had just recently announced that the virus was under control. The sun was shining brightly. How naïve we all were. Just a month later, the U.S. leads the […]
By Alexandra Bánfi in Cambrian News. Two old school friends are on a mission to raise awareness and money for a “forgotten disease”. Mair Squire and Melissa Davies met at school in Newcastle Emlyn at the age of 11. Melissa now lives in Aberystwyth with her son Edwyn Bywood who, at the age of 15, […]
By John Pring in Disability News Service. The government is facing claims that its continuing and repeated refusal to consult with disabled people’s organisations (DPOs) has contributed to its failure to protect disabled people’s rights in responding to the coronavirus crisis. Successive governments since 2012 have been criticised for their failure to engage […]
Fatigue And ME I have a worry on my mind That spins my head around It causes grief, it’s beyond belief And an answer must be found It’s about a word that’s used a lot A word filled with intrigue Not beat, not weary, not tired or wired But that bleedin’ word fatigue ! It’s […]
From the Equality and Human Rights Commission. Equality law recognises that bringing about equality for disabled people may mean changing the way in which services are delivered, providing extra equipment and/or the removal of physical barriers. This is the ‘duty to make reasonable adjustments’. A duty is something someone must do, in this […]
By Cort Johnson in Health Rising. Ronald Reagan said to Gorbachev, “Take down that wall!” and it did ultimately fall. The ME/CFS version of that might be, “Get rid of those stubborn psychiatric ideas!” It’s a cultural problem. The authors pointed out that anytime a physician sees a patient with unexplained fatigue, their default […]
From The ME Association. Latest UK Govt. Guidance 24 March 2020: Last night, the UK Prime Minister launched sweeping restrictions that will impact on everyone. The announcement was the most stringent set of measures ever introduced in this country to prevent people leaving their homes – except for very good reasons. The only […]
By Cort Johnson in Health Rising. Please note, if it’s not obvious, that I’m not a doctor – I’m a patient. Take these musings as you will. We don’t know if people with ME/CFS or FM are more at risk of: a) getting COVID-19; or b) coming down with a severe case of […]
From the Equality and Human Rights Commission. Equality law recognises that bringing about equality for disabled people may mean changing the way in which services are delivered, providing extra equipment and/or the removal of physical barriers. This is the ‘duty to make reasonable adjustments’. A duty is something someone must do, in this case […]
By Veronica Vivona in The Mighty. Living with constant pain can be extremely frustrating. When you don’t feel comfortable, you might develop some habits designed to make things more manageable. You might have back pain that makes it hard to sit in certain chairs. You could potentially have widespread pain that makes it difficult to […]
By Jo Moss in A Journey Through The Fog. Do you ever feel like giving up? Do you ever feel like you don’t have the strength to keep going? Do you ever feel like screaming; “I didn’t sign up for this”? Do you ever feel like the world is against you? Do […]
BY BROOKE VITTIMBERG in Fast Company. When news of COVID-19 started to spread, there were two popular responses. The first was to rush to the store, buying N95 masks and hand sanitizer until shelves were bare. The second was to shrug and comfort the masses because mostly immunocompromised people—people like me—would die. On Twitter, […]
From YorkMix. Community spirit is alive and well in York in the time of Covid-19. Groups are being set up to help fellow residents affected by coranavirus. There is now a York Covid-19 Mutual Aid group, with the aim of supporting vulnerable people in the city through the outbreak. George Turner explained more on the […]
Who we are We are a group of physiotherapists based in the UK who have recognised the issues of physiotherapy for people with ME. Our aims are: – to educate and inform physiotherapists about ME and appropriate management strategies – to support people with ME to feel confident in seeking physiotherapy treatment […]
By Chloe Tear in Huffpost. It feels like every headline you read now is about coronavirus. With the virus causing concern and costing lives worldwide, it isn’t surprising. But it’s important that we talk about what that concern looks like if you’re disabled. We already know those with pre-existing conditions, like me, are more […]
Just to let you know that City of York Council has agreed to light up Clifford’s Tower in York in blue over the period 11 to 17 May to help raise awareness of Myalgic Encephalomyelitis (ME). This is part of a worldwide campaign where buildings in towns and cities across the globe will […]
By Dr Charles Shepherd, Hon. Medical Adviser, ME Association. The ME Association information and guidance about the coronavirus that was originally issued in early February and updated again last week, will continue being updated and issued on a weekly basis. This is to take account of the rapidly changing situation here in the UK […]
My M.E. MOT Woke up today It’s not gone away This beast, it’s here for good Thought maybe a dream But a nightmare it seems I’d sleep through it all if I could. As another day dawns There’s something more going on The pain’s a bit harder to stand It’s tougher […]
By Lorna McFindlow in the Cream Crakered Blog. Two years ago, when I was diagnosed with M.E, I knew a little about it because a friend of mine had it, but other than that I was clueless. From what I was told at the time of my diagnosis, I understood that I was […]
By Kate Harveston in Thought Catalog. I’ve always looked at posters showing the impact of cigarette smoking on the inside of the lungs and thought that if I could figure out a way to illustrate how I feel on the inside when I look fine on the outside, the image likely would turn […]
By Cort Johnson in Health Rising. “It comes down to the simple fact that I do not have enough energy to sustain my recovery. I am not sure that everyone in the CFS is like me, maybe I’m an outlier or just have a unique presentation of the condition. In any case I […]
By Sharon Begly in Stat News. The new coronavirus is not an equal-opportunity killer: Being elderly and having other illnesses, for instance, greatly increases the risk of dying from the disease the virus causes, Covid-19. It’s also possible being male could put you at increased risk. For both medical and public health reasons, researchers want […]
By Laura Brown and Kelly Jones in The Conversation. Plant-based diets have been popular in the media recently, but research shows that going vegetarian or vegan isn’t only good for the environment, but for our health, too. Meat-rich diets are linked to a range of health problems, from heart disease and strokes to type two diabetes and some cancers. […]
By Bree Hogan in The Mighty. I can walk, but I can’t walk very far, and it’s always with pain and fatigue. I can stand, just not for very long. I use a mobility scooter — a small version of an electric wheelchair — and walking sticks. Limited as my mobility is, I’m still made […]
By Daniel Missailidis, Oana Sanislav, Claire Y Allan, Sarah J Annesley, Paul R Fisher in Int. J. Mol. Sci. 2020, 21(3), 1142; [doi.org/10.3390/ijms21031142]. Research abstract: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a devastating illness whose biomedical basis is now beginning to be elucidated. We reported previously that, after recovery from frozen storage, lymphocytes (peripheral blood monocytic cells, PBMCs) from […]
By Cort Johnson in Health Rising. The most primitive part of the brain, the brainstem – a part of “the reptilian brain” – doesn’t get much respect in medical research. VanElzakker pointed out that most brain scan studies focus on the upper, more highly developed parts of the brain. Because brain imaging techniques can’t […]
By Brianne Benness in Medium. Maybe the media has led you to believe that all disabilities are visible and static. Disabilities caused by chronic illness can be anything but. The relationship between chronic illness and disability can be a complicated one. Not everyone who is disabled is chronically ill, and vice versa. And when I […]
By Dr David Bell in ProHealth. Editor’s Note: David S. Bell, MD is a well-known doctor in the field of ME/CFS treatment and research. Though now retired, Bell was among the first physicians who cared for the group of ME/CFS patients that were part of the original cluster of outbreaks in the mid-1980s. […]
From BBCNews. Lorna Bryson, 25, suffers from Myalgic Encephalomyelitis (ME) also known as chronic fatigue syndrome. The illness means she has a low immune system, gets headaches, sore muscles and joints, and needs at least 12 hours sleep every night. Doctors didn’t believe there was anything wrong with Lorna growing up as she […]
By Kalee Oravec in The Mighty. I’ve been sick my whole life. I’ve never been able to keep up with my friends because of fatigue, and my pain interfered with all of my past hobbies. You might think I’m used to it by now, but I’m not. No, it still sucks. A lot. It sucks because I […]
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.
The 15th Invest in ME Research International ME Conference 2020 - IIMEC15 - will take place on 30th May 2020 in London.
15 years of researchers, clinicians and patients interacting.
More details of the conference day will be announced in the coming months. It will be preceded by the 10th Invest in ME Research International Biomedical Research into ME Colloquium - BRMEC10 - a two day closed researchers' meeting with researchers from around the word, and the third year of a full day Thinking the Future - Young/ECR Conference for young and early career investigators.
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.
To go to the Government's Disability Benefits Advice Guide, click on the link below:
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 !
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 and Mobility Club 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 !
![old-telephone[1]](http://www.york-me-community.org/wp-content/uploads/2015/10/old-telephone1-300x240.jpg)
Accessibility
Dial & Ride: 01904 551441
Shopmobility: 01904 679222
York Wheels: 01904 630080
Helplines
NHS Health Enquiries (non emergency): 111
Samaritans: 01904 655888
York Hospital: 01904 631313
Patient Transport Service: 01904 630080
Benefits Service: 01904 551556
Local MP's
York Central Rachel Maskell: 01904 784847
York Outer Julian Sturdy: 01904 784847
Thirsk & Malton Kevin Hollinrake: 01347 666880
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
This is open to any business, club, pub, or organisation looking to have a bit of fun whilst supporting your local community. Our 4th season is well under way and going great guns ! 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 tab at the top of the site for more information, or just to register your interest through the email address supplied.
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.
