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 […]
From #MEAction. #MEAction sent out a press release last week to 300 major publications in the US introducing them to the long haulers who are experiencing symptoms of myalgic encephalomyelitis (ME), specifically post-exertional malaise. We alerted the press to the terrifying possibility that 1 million more Americans could develop ME following COVID-19 at […]
From #MEAction. People with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have been concerned since the start of the coronavirus pandemic that a subset of COVID-19 patients will go on to develop ME/CFS. Unfortunately, we are already hearing from many COVID-19 survivors around the world that they are continuing to experience debilitating symptoms for many months, even […]
By Wilhelmina Jenkins in #MEAction. When I became ill in 1983 with what is now called ME/CFS, my life as I knew it was abruptly destroyed. I dropped into a world of pain, exhaustion, and dozens of other baffling symptoms, most particularly the cognitive disruption that robbed me of the life in physics that […]
From #MEAction. It is with heavy hearts that we share the passing of ME community advocate, Cindy Siegel Shepler. Cindy lived with myalgic encephalomyelitis (ME) and multiple other health issues. She dedicated much of her increasingly limited time and energy to advocacy, increased awareness, and increasing research funds for ME. She had a […]
From ME Action. So I’ve been doing this fundraiser, where I try to get 1000 body weight reps done in half an hour every day to raise money for #meaction. It’s been a test for me in listening to my body, and knowing when to slow down, rest, or even skip a day. And it […]
From #MEAction. Myalgic encephalomyelitis (ME) is a debilitating, chronic disease that steals so much from the person. Parents with ME are missing precious days and years with their children due to the disease, and parents of children with ME are fighting to provide care for their sick children in a world where there is […]
By Jonny Foster in #MEAction. The love of my life battles ME/CFS. It’s a disease that my father has also struggled with since I was a boy, so it’s one I know well. I knew life wasn’t going to be simple when we met, but I dove in head-first anyway. I can’t say […]
By #MEAction. In the past two weeks, The Guardian UK and Psychology Today US have published articles portraying the myalgic encephalomyelitis (ME) community as an angry, misguided mob using social media to denigrate scientific research. Both articles focus on the criticism that Dr. Michael Sharpe, one of the key authors of the PACE trial and […]
By Marianne Granger in #MEAction. In my forties I was moving forward fulfilling my drive to be a community organiser/communicator/coach (my day job) and also a screenwriter (a remnant of my earlier training and work as a stage actor). Being there for my grown children and reveling in the bliss of holding my grandchildren […]
From #MEAction. Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. It often follows an infection and leaves 75% of those affected unable to work and 25% homebound are bedridden. An estimated 15-30 million […]
By Wilhelmina Jenkins in #MEAction. When I became ill in 1983 with what is now called ME/CFS, my life as I knew it was abruptly destroyed. I dropped into a world of pain, exhaustion, and dozens of other baffling symptoms, most particularly the cognitive disruption that robbed me of the life in […]
By Jack Croxall in #MEAction. I came to on the floor of a supermarket in an affluent London borough. I was staring up at a paneled ceiling, half-blinded by piercing white lights. After a groggy moment of confusion, panic set in. I leapt up, finding myself in the middle of a queue […]
From #MEAction. Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. It often follows an infection and leaves 75% of those affected unable to work and 25% homebound are bedridden. An estimated 15-30 million […]
By Adriane Tillman in #MEAction. Allies are critical to the success of any movement and even more so in the case of people with myalgic encephalomyelitis (ME). So many people with ME are bedridden or housebound and unable to participate in some advocacy and activist actions. While we at #MEAction work hard to […]
By Erica Verrillo, who is President of the American ME and CFS Society (AMMES) in #MEAction. Years ago, Dr. Bell made the observation that many people currently living in cars most likely had chronic fatigue syndrome (CFS). (The acronym myalgic encephalomyelitis (ME/CFS) was not used at that time.) Under any circumstances, the threat of homelessness […]
From #MEAction. As always, our community continues to amaze us with its tenacity, creativity, intellect, hard work and generosity. Enjoy a round-up of some of the community happenings these past few months where people with myalgic encephalomyelitis (ME) around the world continue to fight for recognition, treatment, care and dignity. Austrian broadcast station @ATV […]
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 Susan Cole in #MEAcion. ME history was made this week in the historic capital of Scotland when delegates at the Scottish Liberal Democrats autumn conference voted to support conference motion SC5: Investing in ME – Recognition, Research, and Education. So it’s official, the motion, drawn up in consultation with #MEAction Scotland, is […]
From #MEAction. On 25th May 2018, NICE held an engagement workshop with stakeholders, looking at the draft scope for the new guideline on ME/CFS. This is the second workshop held by NICE in which stakeholders were given a chance to influence the development of the new guidelines. The draft scope will be amended […]
By Caroline Christian in #MEAction. I am lucky in that I did not realize the fallibility of medicine until I reached the age of 38. This is when I was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a devastating neuroimmune disease wrongly believed by many doctors to be a psychiatric condition. Throughout the past decade of navigating […]
From #MEAction. ME advocate Mary Dimmock has written a comprehensive report about the flawed science that led to the recommendation of cognitive behavioral therapy (CBT) and graded exercise therapy (GET) for people with Myalgic Encephalomyelitis. The patient community has long reported these treatments to be ineffective and harmful, and, yet, health societies and […]
From #MEAction. Trial Uses Flawed Methodology That Can Lead To False Positives Following the release of the results of the SMILE trial, Ben HsuBorger of ME Action said: “The SMILE trial of the Lightning Process, a known quack treatment, for ME/CFS, used unblinded treatment coupled with subjective, self-report outcomes. It illustrates that such serious […]
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:
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.
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
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 !
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.
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:
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.
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.
-------------------------------------------------------
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.
---------------------------------------------------------
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.
--------------------------------------------------------
Weekly - Every Wed, 8 pm - 9 pm on Twitter, ME Awareness Hour using the #MEAwarenesshour hashtag.
