By Natalie Akoorie in M.E. Awareness NZ. Marcel Robert lives in a rest home. He is 31 years old. Natalie Akoorie finds out what it’s like to be unable to live life because of an illness and why funding for research is so important. In a darkened room at Oxford Court Lifecare in […]
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 Katy Fallon in Refinery 29. When I was a teenager, my mother fell ill with M.E. and I saw her struggle to get her symptoms recognised – even though she was a doctor herself. Myalgic encephalomyelitis (M.E.) is a chronic condition which affects 250,000 people in the UK and around 17 million people […]
By Chloe Leanne Brooks in ME Support. I used to live by the motto “Don’t wait for the storm to pass, learn to dance in the rain” – but unfortunately, in my life this is no longer the case. My life is stormy. I can’t dance through this pain and heartache any more because […]
By Jamison Hill in The Mighty. I love to break things. Yeah, I know, who doesn’t? But I get such a satisfying feeling when I break something. Maybe not a bone, or a really expensive gadget, but breaking something cheap and discardable is satisfying to me. Very satisfying! In 2011, after I was sick for […]
By Paul James. I’m not writing this for me, I’m not writing this for Amy my wife either, today I was made aware of a lady who suffers not only from ME but also from her family’s disbelief and ignorance – so this is for her. I need however, to start with […]
By Simon Del Favero in SBS Insight. When Simon realised that treatment options in Australia for his chronic fatigue syndrome were limited he looked overseas for answers. I was diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in early 2011 after a severe bout of glandular fever. In the years prior to my diagnosis I was studying […]
By Kirsty Hird in The Mighty. I remember in the late 1990s watching a film about a group of teenagers who dabble in witchcraft, with disastrous consequences. They use a form of magic called a “glamour,” which allows the witches to create an illusion, concealing the true form of something. In the film, glamours are used […]
From Solve ME/CFS Initiative. I was an elementary school music teacher, community volunteer, church pianist, wife, and young mother when I became ill in March, 2000. My doctor said I had mono and I was totally bed bound. The sickness wiped away my memory and I lost memories of my children as babies, […]
From Syndrome A. When I was in second grade, a little girl started calling me Weird One. I was elated. I felt that I had been knighted with some sort of public identity and it felt wonderful. I felt as though I belonged in some way and I hardly ever felt as though I […]
By John Siddle in Surrey Live. The cruel condition affects 250,000 people in the UK. An 80-year-old from Farnham has had to skip every family gathering, birthday and Christmas over the past 20 years after a shock diagnosis of a devastating ‘living death’ illness. Nancy Collins a former NHS nurse was struck down with Myalgic Encephalomyelitis (ME) 20 […]
By Zeraph Dylan Moore in #MEAction. Here is a question for you: Is your life small or large? How do you know? Is it possible to have a big life in a single, small room? Or to lead a small life that is lived in many places? Questions like these have become more pertinent to […]
By Joseph Stashko in Medium. I often wonder how it’s possible to be this sick and still be alive. For the past few months, I’ve had a recurring dream. I’m running. I’m not running from anything, and there’s nothing hostile about where I am; it’s actually very close to where I live. I run and run, […]
By Johnathan Davis in HUFFPOST. I have, for a long time, struggled to fully get across the impact this illness has on my life. I have been asked many times what it is like to have myalgic encephalomyelitis (ME) and I have, for a long time, struggled to fully get across the […]
From No Isolation. Makayla was diagnosed with ME at the age of 8. Due to her condition, she is not able to attend school full time. “I get tired, so have to pace myself and am not able to see friends and family as much as would like to.” AV1 has helped take the […]
By Caroline Christian in Health Rising. After 11 years of marinating in chronic illness, my ability to work has all but evaporated and I have entered the world of full time disability for the first time in my life. This time of year would normally mark a return to university life after the summer break. […]
By Liisa Lugus in Quora. I have a horrible disease that doctors can’t cure. It’s called Myalgic Encephalomyelitis. I have a profoundly severe form that has left me paralyzed for 9 months (and then for shorter periods), mute for longer, unable to read/use computer/listen to music for 6 years or to have any one […]
By Lori J. In The Mighty. When I developed ME/CFS (chronic fatigue syndrome), I had never heard of it. I went to a doctor, hoping to get a prescription, and I expected to be back up to full speed in a few days. But, that didn’t happen. So, over the course of the […]
By Claire Rudderty in The Mighty. Let me paint you a picture. You’ll have to go back 11 years. You see that 22 year old girl swinging through the crowd? That’s me. I’m on my way to work. I’d graduated from University a year previously and I was working in corporate research in London. […]
From the Solve ME/CFS Initiative. I am 24 years old, unable to work, and live at home with my parents. I started showing symptoms of disease around the age of 5. Fatigue and pain have always been my top complaints, and the two issues that no medicine has ever helped alleviate. Of […]
By Rose Lewenstein in The Vice. I can’t remember how old I was when I realized my mom had ME, a.k.a. myalgic encephalomyelitis, a.k.a. chronic fatigue syndrome. She was diagnosed when I was two, so I can’t compare the before and after. As a child, I didn’t really think about the fact that […]
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INTRODUCTION
The York ME Community is an ME Support and Awareness Group. What I believe we need is awareness of the illness to be raised and for that we need people to learn about ME and tell others. There are ME charities, and if in the future you or your friends or business wish to do a charity run or whatever in aid of ME, I will happily help and support that aim. (more…)
The figures below show the numbers of people with ME recorded in each country. This will be updated as and when fresh information is sourced. It is also acknowledged that it is difficult to be accurate as ME is still not recognised, therefore not recorded in very many countries. If you can update this information, please let me know the figure, plus source if known. I will be looking to add figures and comments from people living in those countries, so as to have a better feel for how things are there.
Where I give a figure tbc, it means this is the figure I have heard, but am seeking a source to confirm.
UK: 260,000. The National Institute of Health and Care Excellence (NICE) estimates the prevalence of CFS / ME to be 'at least' 0.2% to 0.4% of the UK population, implying up to 1 in 250 people affected, or 260,000 in total.28 Sept 2017
(The University of Bristol research in 2011 estimated the number of 11 to 16 year olds with ME at one in 100).
Ireland: 10,000 - 19,000. According to The Irish ME/CFS Association.
USA: 2.5 million tbc.
France: 150,000 - 500,000. From a member of Millions Missing France: Our country does not yet recognise ME, but estimates are between 150,000 and 500,000.
Canada: 560,000. A 2017 Statistics Canada survey revealed that more than 560,000 Canadians reported that they have the disease.
Sweden: 40,000 tbc.
Australia: 250,000 From Emerge Australia.
Italy: 500,000 tbc.
Portugal: 40,000 tbc.
Romania: 80,000 tbc.
Slovakia: 20,000 tbc.
Denmark: 10,000-20,000. Not recognised as a physical illness. Denmark has no national registration of ME patients. The estimate of 10-20.000 patients rely on NICE estimate that 0,2-0.4% of the population has ME. Diagnosing, treatment and health authorities recognition of ME is close to non-existent, even though their parliament voted to change all that...back in March, 2019.
Austria: Not recognised as a physical illness.
Worldwide: 17 million. This figure is given by NHS Choices.
15 - 30 million. This figure is given by #MEAction.
Paul Beresford Conservative, Mole ValleyTo ask the Secretary of State for Health and Social Care, how much Government funding was allocated to biomedical research into myalgic encephalomyelitis in the financial years (a) 2017-18, (b) 2018-19 and (c) 2019-20.
Helen Whately Minister of State (Department of Health and Social Care)In addition to the funding set out above, the National Institute for Health Research, funded through the Department, and the Medical Research Council have recently announced a £3.2 million award to fund research into potential genetic connections to ME/CFS. The project will analyse samples from 20,000 people with ME/CFS to search for genetic differences that may indicate underlying causes or increase the risk of developing the condition.
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
Link to Written Question In Full
The above shows an imbalance when viewed against the cost of ME to the UK economy. A 2017 report from the think tank 2020 health and the Optimum Health Clinic Foundation reported that the cost of CFS/ME to the UK economy was at least £3.3 billion in 2014/15
To read the ME Research Summary 2019 by ME Action covering the previous ten years, click on the link below:
As you will know, Hansard is an edited verbatim record of all matters discussed in Parliament and records all votes and written ministerial statements. You may be interested in when ME has been mentioned, and so a link to that record is 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 !
To watch the video of Carol Monaghan MP addressing Parliament on M.E., 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 York, and you see a vehicle parked across a dropped kerb, call the council's hotline on 0800 138 1119 and the Civil Enforcement Officers will respond and are able to issue tickets. We know this won't help you right then and there, but the hope is that the more people report it, the more people get tickets, then slowly behaviour will start to change.
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:
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 ! Due to lockdown, there has been very little opportunity to access anywhere, but hopefully this will change in the not too distant future !
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 York ME Community
@YorkMEAwareness
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).
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.
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, please make it this one,
Those within the ME Community have always known how damaging being prescribed Graded Exercise Therapy (GET) can be to their future health. We have a broken energy production system and therefore normal rules do not apply. The PACE Trial tried to show that it helps, but has been debunked by scientists and researchers worldwide. The PACE Trial in fact is now held up as an example of how NOT to conduct such trials.
To understand better the truth of GET and The PACE Trial, click on the link below to watch two short videos.
Dr Byron Hyde has dedicated his medical career to looking into M.E.
In this interview Dr. Byron Hyde, founder of the Nightingale Research Foundation in Ottawa, Canada, emphasizes the brain and enteroviruses. He also emphasizes his belief that Myalgic Encephalomyelitis and Chronic Fatigue Syndrome are separate issues.
To watch this interview on YouTube, click on the link below:
We are the ME/CFS Biomedical Partnership, a collaboration between researchers and people with ME/CFS, carers and the public.
The DecodeME DNA study aims to help us understand the disease and ultimately find treatments.
To read more, or get involved, click on the link below:
This is open to any organisation looking to have a bit of fun whilst supporting your local community. We're underway now for the current season but will be recruiting teams for our 6th season around July 2021. 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 ?
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.
THE FOLLOWING EVENTS ARE CURRENTLY SUSPENDED, EXCEPT FOR THE ME AWARENESS HOUR, WHICH IS ON TWITTER. STAY SAFE, BE KIND.
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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.
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.
