From Physios For ME. In May 2020 we were thrilled to announce that we had obtained funding from the ME Association Ramsey Research Fund for a study; “Feasibility of investigating oxygen consumption (VO2), heart rate, blood pressure, lactic acid levels and activity levels of people with Myalgic Encephalomyelitis during normal daily activities.” You can […]
From The Honest Migraine. The Honest Migraine is pleased to share an exclusive, three-part interview with highly respected expert, Dr. Nancy Klimas, who holds multiple noteworthy positions including Director, Institute for Neuro-Immune Medicine, Nova Southeastern University. Klimas specializes in myalgic encephalomyelitis – chronic fatigue syndrome (ME/CFS), which commonly results in migraines, “brain fog,” and […]
From The ME Association. A highly influential UK campaign group is demanding that a health warning be put on the existing NICE guideline for ME/CFS – to try and stop more patients being damaged by graded exercise. Some 24 members of the Forward-ME Group – led by founder The Countess of Mar – have signed […]
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 […]
By Cara Tomas, Joanna L Elson, Julia L Newton & Mark Walker in ME Research UK. Translational and Clinical Research Institute, Newcastle University, Newcastle upon Tyne, UK Scientific Reports, 2020 Oct 26; 10(1):18232 Key findings Muscle cells from people with ME/CFS are less able to use glucose as a fuel to produce energy This […]
From Emerge Australia. Established in October 2020, Open Medicine Foundation Australia (OMF Australia) is an Australian foundation set up to support biomedical research through the establishment of a new ME/CFS collaborative research centre in Australia. OMF Australia was founded by Emerge Australia in partnership with the Open Medicine Foundation, meaning that Australia is now […]
From Healthwatch York. Healthwatch York at York CVS is keen to recruit at least three new Steering Group members, including a new Chair. Steering Group members play an essential role in setting our strategic direction and checking that we are on track to deliver our aims and objectives. The coronavirus pandemic has highlighted and […]
By Deborah Marshall in Griffith News. The National Centre for Neuroimmunology and Emerging Diseases (NCNED) has been awarded $1.46 million in National Health and Medical Research Council funding for research into myalgic encephalomyelitis /chronic fatigue syndrome (ME/CFS). Part of Griffith University’s Menzies Health Institute Queensland , the centre’s researchers will investigate potential diagnostic tests as well as suitable […]
With the likelihood of less Poppy Sellers out there to remind us of the importance of the 11th of November, I thought we should be reminded a little earlier this year. The Legion Man He stands with pride As well he might Medals upon his chest With memories of the fallen Who now are laid […]
From Emerge Australia. Emerge Australia conducted a second Health and Wellbeing Survey of people living with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) in 2019. An impressive 1,055 participants from around Australia answered 60 questions covering demographics, caring responsibilities, ME/CFS onset and symptom experience, access to healthcare and other services, and the effect […]
By Ronald G. Tompkins, MD, ScD Co-Director, The Harvard ME/CFS Collaboration in Open Medicine Foundation. In May, 2020, Open Medicine Foundation (OMF) announced the Mestinon Clinical Trial for ME / CFS, conducted at the Brigham & Women’s Hospital by Dr. David Systrom in association with the Harvard ME / CFS Collaboration at the Harvard Affiliated Hospitals. Background This study was […]
By Russell Fleming, Content Manager, ME Association The following letter has been produced by the Countess of Mar and members of Forward ME which is a collaboration of M.E. charities that includes the ME Association. It has been used by, for example, Physios 4 ME, when encountering guidance from other organisations that has raised […]
From Science For ME. A rundown of the research stories from August 2020. To read the stories, click on the link below: Link to News In Brief
From The Open Medicine Foundation. Open Medicine Foundation (OMF) is thrilled to share that our staff science liaison, Christopher W. Armstrong, PhD, has been awarded a grant to further his research into the relationship between the altered metabolism of nitrogen and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The research will be completed at the ME/CFS Collaborative […]
Our one to one carer support and advice is being provided over the telephone at the moment, please get in touch if you need us, we’re here to help. All our support groups and activities listed below are taking place online via zoom, and bookable by contacting our reception on enquiries@yorkcarerscentre or 01904 715490. If you’d like to take […]
From Norwich Research Park. UK Charity Invest in ME Research is awarding £625,000 for continued research into the disease myalgic encephalomyelitis (ME or ME/CFS), including a clinicial trial at the Quadram Institute. This major investment is an increase of the charity’s previous pledge of £500,000 that was announced in late 2019. This research builds on […]
By Ryan Holmes in Matza Review. A singer who has ME has launched her debut album, after spending two years recording it whereas bedbound, with it presently quantity two within the Amazon Best Sellers chart forward of Taylor Swift. Kara Jane Spencer, 29, from Shirebrook, Derbs., was recognized with the debilitating situation when she was simply […]
The York ME TGA Inter-Company Fantasy Football League The York ME Community runs an Inter-Company Fantasy Football League sponsored by TGA Mobility. This is to help raise awareness of the illness that affects around 250,00 people in the UK, and 800 to 1,000 people of all ages in the York area alone. Companies enjoyed […]
To help highlight those missing from their lives, this being Severe ME Awareness Week. Millions Missing Tommy missing from the five a sides A different postman today Jenny not out, not seen her about Maybe she’s just gone away No Mary at the Bingo Charlie, where is that guy? Rang the teacher, couldn’t […]
From the Open Medicine Foundation. Open Medicine Foundation (OMF) is excited to announce a new collaborative study between the ME/CFS Collaborative Research Center at Uppsala, Sweden and the Harvard ME/CFS Collaboration. This study focuses on biomarkers for long-term neurocognitive outcomes. It provides an excellent opportunity to understand the mechanism of long-lasting viral-induced cognitive complications, commonly referred to […]
Accessing carer groups from home You can now access our carer support groups and activities online as we continue to work within government guidance, and explore ways we can offer our face to face groups in the future. If you’d like to take part in any of our groups/activities, and would like help setting up […]
By Dr Charles Shepherd, Hon. Medical Adviser, ME Association. I am aware that some people with ME/CFS have a number of concerns about the amount of time and effort we are devoting to people with Post-COVID Fatigue and Post/Long-COVID Syndromes. In particular: — the possibility that people with post-COVID fatigue and post/long-COVID syndromes are […]
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.
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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.
