By Russell Fleming in The ME Association. We are excited to announce a new international research study looking at the impact of ME/CFS on the quality of life of both patients and their family members. This is a short and simple online survey designed to be accessible to all adults 18+, including severely affected patients. […]
By Megan E. Doherty in elemental. Covid-19 is new, but the ME/CFS community has dealt with long-haul-like symptoms for years. Here’s how they cope. Asthe pandemic has progressed, it has become clear that a good chunk of Covid-19 patients suffer symptoms for weeks, even months, after first getting sick. Many of them deal with fatigue, muscle and […]
By Linda Geddes in The Guardian. Six weeks after contracting Covid-19 in April, Dr Amy Small felt well enough to attempt a walk around Holyrood park in Edinburgh with her young family. Her kids wanted to climb Arthur’s Seat – the craggy hill at its centre. Thinking it would be OK if she walked slowly, […]
LIVING LIFE ‘LIGHT’ WITH M.E. When ME strikes We know the score Our lives won’t be As they were before We learn to pace Wind things down Cut things out Try not to drown Living on the edge of fun As if your life is all but done In the shadows, out of sight […]
Written by Di in Stanford Wood Studio. Di has had a fascination with beautiful handmade items all her life and always had a yen to try making some herself, yet forever found herself putting it off. She got to the stage where she thought, if not now; when? And that’s how she […]
By Valerie Eliot Smith in Law and Health: due process and civil society. Note: this post runs at 2270 words. It falls naturally into two sections of approximately the same length. ************** The blog has been rather quiet for a while. While my day-to-day work does not stop, my ability to write blog posts is […]
By Gem Turner in WheelAir. At the time of posting this, it’s Disability History Month in the UK. It’s not very widely known – and when I talk about it, it gets a lot of questions from people. The main one is something like “it’s quite good for disabled people now though isn’t […]
By Bill Clayton. Just a little update on the tooth extraction. I’ve just been talking about this as ME means that I needed a general aesthetic due to not being able to deal with the lights, vibrations, and the whole construction team that would have to climb into my mouth at the same time ! […]
From #MEAction. Today we announce that #MEAction’s co-founder and executive director, Jennifer Brea, is going to be transitioning to a board position so she can take time to focus on her health after five intense years of ME and advocacy. This will not happen immediately- we will be working hard to find a […]
By Justine Jordan in The Guardian. Sixteen years ago, Susanna Clarke’s debut novel became a publishing phenomenon. Jonathan Strange & Mr Norrell is an unlikely story of intellectual obsession, set in a Regency England in which the buried powers of English magic are reawoken by two scholar magicians. The prose style mashes together Jane Austen […]
By Samantha Renke in the Metro. I have a confession: I seem to have fallen out of love with London, something I never thought would (or even could) happen. Having moved to the Big Smoke almost nine years ago to follow my dreams and live independently, I imagined spending the rest of my adult […]
By John Pring in Disability News Service. Three MPs – two of whom have long-term health conditions – have exposed the widespread discrimination faced by disabled MPs due to outdated House of Commons rules, both before and during the COVID-19 pandemic. More than 100 “very high risk” MPs are currently “excluded” from taking […]
By Marc Churches from Australian Motor Sports. Australian MotoGP legend Casey Stoner has opened up on his health issues as he continues to battle with Chronic Fatigue Syndrome (ME/CFS). The two-time MotoGP World Champion revealed last year that he had been diagnosed with the debilitating illness, which impacts on sleep, causes profound fatigue […]
By Sylvia Colt-Lacayo in Huffpost. Recently, I was in the grocery store, minding my own business, when I heard, “Daddy, what’s wrong with her legs?” I looked to the right and saw a young boy with a now-embarrassed father, who quickly shushed his son. The dad made eye contact with me, trying to relay […]
Nadine Sander-Green in The Globe and Mail. By the time I reached my early thirties, I had climbed one of the world’s highest volcanoes in Ecuador, won an arm-wrestling contest in Dawson City and trekked through the Himalayas for a month straight. All I had to do was ask my body to do something, and […]
There are approximately 49,058 cities, towns and villages in the UK. The disabled spend is around £212 billion per year. I wonder how many of these places have banned Blue Badge holders from their centres stopping them spending some of that money with struggling retailers? York has..
By TJM in Disability News Service. Local authorities in England and Wales are facing calls to re-think the “streetscape” changes being made in response to COVID-19, amid concerns that the new street infrastructure is making parts of towns and cities inaccessible to many disabled people. Disabled people and their organisations have previously warned that many […]
From BMA. Doctors who contracted COVID, and thought the symptoms would be over in weeks, tell Jennifer Trueland about their continuing pain, exhaustion and – sometimes – struggle to be believed. Richard Campbell had a demanding job as a consultant rheumatologist in a busy London trust at the start of the year. In his […]
From Physios for M.E. We’re delighted to present another young person’s story about how they are managing education alongside ME. Sian is 15 years old and has written this for us – thank you so much Sian! “One of the most important things I found I could do for myself, in terms of pacing […]
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 […]
M.E. and ME I ran, I swam, it’s who I am I laughed, had fun, enjoyed the sun. I was doing such when this begun. Felt a chill on a good warm day Aches and pains that won’t go away Like the flu, I heard it said But arms and legs are made of […]
HELLO, IS IT ME YOU’RE LOOKING FOR ? I’m sure you know the feeling I’m sure you know the score Hit with ME, you soon get to see How things are not as before I hoped my friends would stay with me I seriously thought they would I thought that they’d care And would […]
By: John Gibb in the Otago Daily Times. In a cruel twist, many Covid-19 survivors could be affected by a once-obscure chronic fatigue condition, initially termed the Tapanui flu, and whose existence was once ridiculed and denied. Emeritus Prof Warren Tate, 73, of the University of Otago biochemistry department, officially retired recently but is continuing […]
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.
