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 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 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 Pippa Stacey in CareCo Mobility News. With March being National Bed Month, I thought I’d use today’s piece to discuss my experiences with a natural human function that continues to evade me… sleep. Y’know what’s really fun? Having a long-term condition that causes chronic fatigue, and yet simultaneously impacts your ability to achieve restorative […]
BY ADMINDXRW in DX Revision Watch. In my report for the December edition of the ME Global Chronicle, I set out how the G93.3 terms: Postviral fatigue syndrome Benign myalgic encephalomyelitis Chronic fatigue syndrome are classified in the World Health Organization’s international version of ICD-10 and how these terms have been classified for ICD-11. I have […]
By Julia Ries in Huffpost. This story is from HuffPost in the US – and part of Pain in America, a nine-part series looking at some of the underlying causes of the opioid addiction crisis and how we treat pain. Chronic pain comes in all different shapes and sizes — it burns, […]
From Stanford Medicine Welcome The ME/CFS Initiative conducts extensive clinical research in an effort to improve diagnosis and treatment of this debilitating illness. Stanford Medicine has had great success in engaging and collaborating with nearly 50 researchers across Stanford University and beyond. Together, they have discovered various potential biomarkers that have confirmed […]
From The Grace Charity site. If you have M.E., the following might help you practically: G.P. If anyone can recommend good GPs in the Maidstone area for M.E. sufferers, please let us know. Try to get a supportive G.P. They are the gateway to much needed benefits. If you can’t get a […]
By Cort Johnson in Health Rising. In 2015, Dean Echenberg, MD, PhD, a former public health official and Director of Disease Control in San Francisco at the height of the HIV/AIDS epidemic, had a question. His own course of ME/CFS had been anything but smooth. Echenberg had experienced years of illness punctuated sometimes […]
By Chloe Cooper in Voices. In early January 2019, I was doing what I do every year – reviewing my achievements of the past 12 months and setting my goals for the year to come. Like countless others who go through the same process, this felt like an essential step to becoming the […]
By Andrew O’Connor in ABC News. The catastrophic collapse of Tony Wallace’s life began slowly and silently. An episode of flu. A persistent illness. A feeling of fatigue. A sense something was not so much wrong, as not quite right. Over time, his ambiguous symptoms have morphed into a condition that defies medical […]
By Una Hearne. Introduction I am writing this to put a final nail in the coffin of the idea that ME/CFS is a psychosomatic issue; that it is ‘all in the mind’. Having both the physical illness ME/CFS (from age 16) and the mental illness Depression (since birth), I am in a […]
By Kerry Thompson in AccessAble. Disability blogger and campaigner Kerry Thompson, who has Muscular Dystrophy and uses a wheelchair, gives us her top 5 tips for making Christmas parties accessible. December is here! The shops are filled with Christmas Trees and decorations, the bars and restaurants are advertising booking Christmas parties, it’s a […]
From ME Research UK. Despite their dramatic name, natural killer (NK) cells are actually a very important part of our immune system and help protect us from viruses by killing cells that have been infected. They can also target tumour cells. There is evidence to suggest that the cytotoxicity of NK cells (that […]
Metaphors And ME Explaining what ME is like Is really pretty tough We want to keep it simple But it’s more than feeling rough We could start the list of symptoms But you’d find them a bit of a bore So those of us in the ME club Like a nifty metaphor The […]
By Laura Abernethy in The Metro. When dealing with a chronic illness, there can be lots of unexpected costs. Although we have a national health service that means everyone can get free treatment, there’s the cost of travelling for appointments, prescription charges, hospital parking, buying equipment or paying for treatment that isn’t available […]
From the Mummying And M.E. Blog. NB: This is just my experience of an M.E. crash. This description is not going to be the same for everyone. My daughter is talking to me this morning, but I don’t understand what she’s saying. My husband has been doing the washing up downstairs, opening […]
By Cort Johnson in Health Rising. I met Dr. Chheda of the Center for Complex Diseases at Ron Davis’s Working Group Meetings funded by the Open Medicine Foundation. She graciously agreed to talk more about how she approaches treating ME/CFS in her practice. I was particularly eager to talk to one of the younger […]
By Jo Moss in A Journey Through The Fog. I find hypersensitivity one of the hardest ME/CFS symptoms to cope with as it can be so isolating. Hypersensitivity comes in many forms: hypersensitivity to light, touch, noise, smells, vibrations, foods, medication, chemicals, heat, cold and irritants like pollen and dust. All of […]
From the Not Just Tired Blog. As I’m writing this post, I’m sat in bed, having to take time out to rest, whilst we have a family member staying with us for the weekend. Enjoying listening from afar to the lively chatter, yet not a part of it. Would I not rather be downstairs, chatting […]
By Siobhain Simper in The Mighty. As you may be aware, living with a debilitating chronic illness is no fun: the challenges thrown at you by a disease which dictates your every move can be overwhelming. But today, I’m choosing to celebrate the bright side. By putting a positive spin on […]
By Cort Johnson in Health Rising. Were you an avid exerciser prior to becoming diagnosed with chronic fatigue syndrome (ME/CFS)? Are you sure you were diagnosed correctly? Symptomatically, overtraining syndrome (OTS) and ME/CFS appear almost identical. Symptoms like fatigue, pain, post-exertional malaise, sleep problems and cognitive issues pervade both “syndromes”. If it was […]
By Cort Johnson in Health Rising. Chronic fatigue syndrome is a terrible name. It’s such a terrible name that you have to give the people around you a little break. With that name, they’re almost doomed, at least at first, to think ME/CFS is a milquetoast kind of disease best suited to […]
From Nursing In Practice. Health professionals should be made aware that ME/CFS is not a psychological illness and in order to improve patient care, nurses need to better understand this illness and its impact on patients. Nurses often witness close-up the impact of acute and chronic illness on patients. Myalgic encephalomyelitis (ME)/chronic fatigue syndrome […]
By Emma Tierney in The Mighty. We are 19 years on now from the year I was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The year a GP said to me in the most patronizing of voices, “you need an exercise bike” during an appointment that I’d been carried into by my […]
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 […]
By Lori Madeira and Cort Johnson in Health Rising. In the face of a chronic illness, our friends and family can resort to simple solutions: just try and be positive they might advise. Look on the bright side. Focus oun what you can do. It’s not bad advice, but it often comes across as out […]
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 […]
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 […]
By Simon Parker in Health Rising. Fifteen years ago I was diagnosed with Fibromyalgia and ME (aka Chronic Fatigue Syndrome), a debilitating condition that includes continual pain and delayed fatigue as its primary symptoms. I often find myself trying to explain to other people what the delayed fatigue is like by giving an example […]
From Disabled Police Association. Colin Paine is a Detective Chief Superintendent in Thames Valley Police. He is currently working on the Police Spending Review with the NPCC. Here he reflects on his diagnosis of Myalgic Encephalopathy (ME)/Chronic Fatigue Syndrome (CFS). Police work feels inherently fast paced. It is in the nature of our work that […]
By Cort Johnson in Health Rising. A Different Approach to Fibromyalgia “The effects of not getting good blood flow to your brain, joints and muscles?…. Fibromyalgia” – Vital Motion Erik Hiester D.O., is not your ordinary doctor. He’s an interesting blend of engineer and doctor. Hiester’s first love was biomedical engineering (B.S. and M.S.). Wanting […]
By Veronique Mead M.D. in Health Rising. Thanks again to Veronique for providing her intriguing take on chronic fatigue syndrome (ME/CFS). This is one of a series of articles from Health Rising which feature hypotheses created by health care professionals with ME/CFS or who are associated with ME/CFS. (It is a long post – you […]
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.
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:
![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
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 !
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.
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 !
