By Whitney Dafoe. Having Severe ME/CFS is so close to being dead. There’s really no other way to describe the experience I have had. I don’t think it’s something that people who haven’t had severe ME/CFS can likely understand. Looking back at who I was when I had mild and moderate ME/CFS I’m not […]
By Cort Johnson in Health Rising. It’s Whitney Dafoe’s 37th birthday. He’s had chronic fatigue syndrome (ME/CFS) since 2004 and has been severely ill since about 2012. Fed by feeding tubes, eyes and ears covered, too weak to move, unable to speak or tolerate almost any stimuli. Whitney has hovered in a kind of […]
By Jo Moss in A Journey Through The Fog. Foreword: Myalgic Encephalomyelitis (M.E.) is an incredibly isolating and debilitating condition but I don’t want your sympathy, that’s not why I’m writing this piece. All we (the M.E. community) ask is for understanding and education. We want to be taken seriously by medical professionals and […]
By Pheobe Boag in Puffins, Penguins and Me. It’s been a good few months since my last post, and you’ll soon find out why, I’ve had a lot going on. With so much happening, my limited brain function has had to be directed elsewhere, and my poor wee blog has been neglected as […]
by Sam* in ME Australia. Sam (*not her real name) is a teenager living in Australia’s largest city without access to treatment to help her. Sam was prescribed graded exercise therapy (GET) and cognitive behavioural therapy (CBT) repeatedly. After doing GET, Sam became housebound. Sam now has very severe ME and says […]
By Sarah Stanton in Medium. Living with conditions like severe ME is hard. Gold standard health recommendations like sunshine and exercise simply don’t apply to us. And most of the articles out there suggesting activities for bedbound people assume a higher level of functionality than we generally have. With that in mind, here […]
From A Journey Through The Fog by Jo Moss. I have created a very honest video about the reality of living with severe ME to try to raise awareness. I would really appreciate it if you could watch and share. Thank you. “ME has stolen so much from me but the most frustrating […]
By Greg Crowhurst in M.E. Support. Linda, my wife, collapsed over two decades ago and very quickly became bed bound. In the months leading up to her collapse, she had had several operations and a long chest infection. For almost two years prior to that she was in constant pain, experiencing severe pins […]
I just heard this morning that we have lost Olwen Tinnion who had become very ill with pancreatitis. Sadly, we also know that Olwen had severe ME. Her sister has said that she passed very quickly and peacefully, surrounded by love and family. This has hit me like a bombshell this morning. Olwen was […]
By Jo Moss in The Mighty. When you have severe ME/CFS, or any illness that causes you to become housebound, you feel isolated. It’s very easy to feel forgotten. Your life is put on hold but the world goes on outside without you. How can an event that is so catastrophic for you […]
From the ‘Not Just Tired’ Blog. This is the first interview of my new blog feature – “Interviews with people living with ME/CFS.” The idea is to interview people living with ME, and gain an insight into their lives, to help raise awareness and increase understanding of this disease. You can read more about it here. […]
By Stonebird. People with Severe and Very Severe ME are not safe within the current health system; this is not an exhaustive list by any means : 1. It is virtually impossible for the most severely affected to travel to a clinic or a hospital. 2. It is extremely difficult to find a knowledgeable […]
By Paul Tomkins at paultomkins.com. It is torture, of a kind. The unrelenting jab of needles into the spine. The vice clamped to the temples and tightened. The syringes slowly draining blood from the thighs, injecting concrete into the calves. Poison swelling in the stomach, pumping to the veins, tying knots in the guts. […]
By Isabel Walter in The Mighty. Around 25 percent of people with myalgic encephalomyelitis (ME) are severely affected by the disease. Typically they’re housebound or bed-bound, sometimes for years, unable to carry out the basic tasks of day-to-day living. I’m one of them. When you have ME, the world gets magnified. Things become too […]
by Sasha Nimmo in The Blue Coffee Mug Blog in ME Australia. Between 24,000 – 60,000 Australians have severe ME. This is the first in a series telling the stories of Australians with severe ME. Given the wrong medical treatment and intervention harmed this patient’s health to the point of no return. Disbelief […]
Studies have shown that about four in every 1,000 people in any population suffers from ME. In York the population is around 200,000. That means there are about 800 people in the York area with ME. Published figures also suggest that 25% of people with this illness have it at a severe level. That […]
By Russell Logan in Shout About ME. “…the opposite of life is not death, it’s indifference” — Elie Wiesel They’re known as the ‘invisible’ ones, the severe Myalgic Encephalomyelitis (ME) patients that governments, doctors, researchers and communities refuse to acknowledge. The US CDC even renamed the illness Chronic Fatigue Syndrome (CFS) […]
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:
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 !
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.
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:
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).
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.
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.
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.
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 ?
To join in for next season, click on the Fantasy Football League tab at the top of the site for all the information you'll need.
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 |
To read the ME Research Summary 2019 by ME Action covering the last ten years, 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.
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.
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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.
