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 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 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 […]
By Tiffany Early in The Mighty. My husband and I had a conversation about how others perceive my illness the other day. It wasn’t a confrontational conversation — it was more the random musings that happen when you’re waiting for dinner to come out of the oven. Joe mentioned that a mutual friend had once […]
By Lisa Alioto in The Mighty. For the past six years I have lived with myalgic encephalomyelitis (ME). It’s a multi-system disease that affects the neurological, endocrine, immune and energy metabolism systems. Its hallmark symptom is post-exertional malaise (PEM). PEM is a reduction in functioning and a severe worsening of symptoms after even minimal exertion. […]
By Claire Brumback in The Mighty. “Why doesn’t anyone believe me?” I ask myself this question too often. I have chronic pain and suffer with it every day, but no one believes me. On days I can’t get out of bed, or days I go to the ER because the pain is unbearable, […]
By Heidi in The Mighty. Whenever I am scrolling through chronic illness forums online, I usually come across posts about mobility aids. Having postural orthostatic tachycardia syndrome, or POTS, I understand what it feels like to use mobility aids in public without an obvious physical disability. “But you don’t look sick.” “Are you […]
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 Sally Doherty in The Mighty. I’ve had some of those awful days recently (they happen now and then, and more often than I’d like). You know the type: days when instead of your bed being somewhere that you go to rest, your bed becomes a prison that you can barely get out of. […]
By Britt Renee in The Mighty. It seems like getting familiar with loneliness is inherent in living the chronic illness life. This loneliness doesn’t come from being literally and physically alone, though I’m learning there is a decent amount of “alone time” one has to learn to appreciate when being chronically ill. […]
By Renee Fabian in The Mighty. If you’ve been diagnosed with a chronic illness and experienced trauma, you may have some uneasy feelings about the connection between the two. After all, some doctors who don’t really understand tricky conditions like fibromyalgia or myalgic encephalomyelitis (ME/CFS), for example, might be quick to tell you your symptoms are […]
By Sarah Mariann Martland in The Mighty. This is a love letter to all those for whom showering is repeatedly a laborious exercise, physically, emotionally or both. To those who spend days putting it off because you know just how exhausting or painful it feels, right down to your bones, just to stand under the […]
By Asa Lovell in The Mighty. No one prepares you for the grief and feelings of inadequacy you get when you have chronic illnesses. They make such a huge impact on your life that they derail you, stop you from achieving the things you’re working for in the time you’d planned. You […]
By Sophie Cooklynne in The Mighty. Downstairs, my two-year-old son, Lucas, is playing. He’s a beautiful, clever and sweet little boy who lights up my entire world. Upstairs, I lie in a single bed, trapped in the shell of a body; bedridden permanently and suffering dozens of symptoms that mean that […]
By Laurel Younis in The Mighty. OK, here it – the biggest and most important secret you will need to survive chronic illness. The key to surviving chronic illness is surviving it in any way you can. Now I know what you may be thinking, “Really? Is this seriously the advice you’re giving […]
By Juliana Philippa Kerrest in The Mighty. Something I greatly struggle with are the emotional ups and downs that come with dealing with a chronic illness. I have three chronic conditions that have affected me to varying degrees throughout my life: psychological, neurological, and autoimmune. Most of the time, I handle it relatively well; I […]
By Shell Pettifer in The Mighty. “Chronic fatigue, my arse!” I have a confession to make. I have oftentimes throughout my life internally judged people for being overly dramatic. There, I’ve said it. I am a closet censure. I am guilty of internal eye rolls, doubtful compassion and quite frankly some completely uneducated […]
By Simone DM in The Mighty. When you become ill, all you want is for others to be compassionate and understanding. Yet when you come down with something like ME (myalgic encephalomyelitis), that not even your doctor comprehends, it’s a different story. Others are quick to pass judgement, believing you are somehow causing your […]
By Emma England in The Mighty. One of the most frustrating things about living with CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) is that most of the time, I don’t “look” ill, and so people may not understand the fact that there’s anything wrong with me. CFS/ME falls into the category described as […]
By Erin Migdol in The Mighty. When you have an illness that is invisible, complex and/or difficult to treat, that sometimes translates into challenging experiences with doctors. While there are many kind, compassionate doctors out there who are willing to put in the time to figure out your health issues, unfortunately many in […]
By Michelle Levy in The Mighty. Getting sick is no laughing matter, but it often takes humor to be able to get through the ups and downs of chronic illness. While some of these comics make us laugh out loud in pained affirmation, mostly they raise awareness of chronic illness, and […]
By Lisa Alioto in The Mighty. When I was me… I always greeted you with a smile. I may have tried to say something funny to put a smile on your face and I was always excited about whatever plans we had for the day. When I was me… I worked out. Sweaty, […]
By Chelsea Morris in The Mighty. Balance! How do we achieve it? I think for any human being balance is very difficult. But for those of us with chronic pain and disease it seems to be even harder. I wake up one day and feel actually pretty good. So I want to accomplish more than […]
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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.
It’s said that 17 million people in the world have ME/CFS – but this figure is no more than a rough guess based on crude prevalence estimates from developed countries (0.2 to 0.4%, including children) applied to the 7 billion inhabitants of planet Earth! In fact, rigorous, robust estimates of the occurrence of the illness in each country are needed, particularly to plan healthcare and allocate funding for research.
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: 836,000 - 2.5 million According to an Institute of Medicine (IOM) report published in 2015, an estimated 836,000 to 2.5 million Americans suffer from ME/CFS, but most of them have not been diagnosed.
Canada: 560,000. A 2017 Statistics Canada survey revealed that more than 560,000 Canadians reported that they have the disease.
Sweden: 40,000. Riksföreningen för ME-patienter (RME, the Swedish ME Association) estimates that approx 40 000 people in Sweden are living with ME/CFS. Most of them have not been diagnosed.
Australia: 250,000 From Emerge Australia.
Italy: 500,000 tbc.
Malta: Due to unwillingness to diagnose and lack of knowledge on ME, it's difficult for doctors to give an accurate figure. Some doctors say it is approx. 0.02 % same as in Europe.
Portugal: 40,000 tbc.
Romania: 80,000 tbc. Based upon other European ratios, there are as many as 80,000 people living in Romania with M.E.
Slovakia: 20,000 tbc. It's estimated that there are approximately 20,000 people with ME living in Slovakia (in line with other European ratios).
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.
