By John Pring in Disability News Service. Disabled people have highlighted gaps in social security support, flaws in the shielding system and worries about access to vaccines, after they were asked to describe their concerns as England entered its third national coronavirus lockdown*. They raised scores of different issues, ranging from worries about the accessibility […]
From: Disability Unit and Justin Tomlinson MP in Gov.uk. The Cabinet Office, on behalf of the Minister for Disabled People, Health and Work, is seeking fourteen new Disability and Access Ambassadors to help to ensure businesses are doing all they can to support their disabled customers. They will join existing Ambassadors who have been helping industry and the Government […]
From Solve M.E. Since 2017, unleashing the potential research funds from the Department of Defense (DOD) for ME/CFS has been one of our highest priorities. After more than three years of hard work, the first ME/CFS awards *ever* funded by Peer Reviewed Medical Research Program (PRMRP) have been announced! This has been a really hard year […]
From The Guardian. Twenty-five years after discrimination was outlawed, progress towards inclusion and equality has gone into reverse. There should have been a feature film, or a primetime TV series. Maybe one day there will be. But this year, the 25th anniversary of the Disability Discrimination Act – a landmark piece of legislation […]
By John Pring in Disability News Service. The UK government appears to have bowed to months of pressure from disabled campaigners and allies, after quietly revealing that it is considering taking “further action” to protect disabled people from the pandemic. It comes alongside an admission that disabled people have been “disproportionately impacted” by COVID-19, […]
By John Pring in Disability News Service. Governments around the world – including the UK’s – have “overwhelmingly failed” to protect disabled people’s rights in responding to the global pandemic, according to the results of a major international survey. This has had “dire consequences”, with thousands of avoidable and preventable deaths and other “serious […]
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two of whom have long-term health conditions – have exposed the widespread discrimination faced by disabled MPs due to outdated House of Commons rules, both before and during the COVID-19 pandemic.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 John Pring in Disability News Service. The recession associated with the pandemic is likely to be having a disproportionate impact on disabled employees, just as it did in the last recession, according to academics. They have examined the impact on disabled people during the recession of 2007 to 2009, and believe it is […]
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 John Pring in Disability News Service. Work and pensions secretary Therese Coffey has failed to sign up to her own much-criticised disability employment scheme, Disability Confident, her department has admitted. The Department for Work and Pensions (DWP) has also admitted that Sir Iain Duncan Smith, who launched the scheme in 2013, when […]
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 UK Parliament Website. Temporary Coronavirus Act provisions due to be debated in the House of Commons on Weds 30 September could substantially restrict or curtail important, hard-won rights that disabled people rely on for their quality of life, says a new report by the Women and Equalities Committee. To read the […]
By John Pring in Disability News Service. The Department for Work and Pensions (DWP) appears to have performed a partial U-turn after disabled campaigners reacted angrily to an apparent ban on media requests from Disability News Service (DNS). Last week, DNS reported how DWP’s press office had failed to provide a meaningful response […]
By John Pring in Disability News Service. Two disabled peers have called on the health and social care secretary to scrap powers given to local authorities that allow them to suspend some of their social care duties during the coronavirus pandemic. Crossbench peers Baroness [Jane] Campbell and Baroness [Tanni] Grey-Thompson have written to […]
By John Pring in Disability News Service. The Department for Work and Pensions (DWP) has stopped answering questions from Disability News Service (DNS), and is refusing to explain why it has taken the “totally unacceptable” step. Since early July, DWP’s press office has failed to provide a meaningful response to questions submitted by […]
From Independent Living. If you are a Blue Badge holder, and you have been struggling to find an unoccupied disabled parking bay, it is probably not surprising. According to data obtained from Freedom of Information requests made by confused.com, there are 38 badge holders per parking space… Since the welcome extension of Blue […]
By Vicky Foxcroft MP in The House. Two thirds of all Covid-19 deaths so far have been disabled people. The Government needs to ensure those who were shielding are not forced to go back to an unsafe workplace. Since the national shielding programme ended on the 1st of August, lots of people have […]
By Eddie Ngaluafe in Griffith News. Griffith University research has calculated the cost of the debilitating illness myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) at $14.5 billion each year in Australia. Professor Sonya Marshall-Gradisnik, co-director of the National Centre for Neuroimmunology and Emerging Diseases (NCNED), says the figure shows the significant economic toll on patients and the broader […]
The Guilt of ME When the beast descends we know the score Strength and hope go through the floor We’ve all been on this road before Another day of guilt Want to take my part in life Want to spend some time with wife Want to cause no further strife Another day of guilt […]
From gov.uk. Homes England and Network Rail will be investing £77 million to ensure that York’s new city centre quarter development goes ahead, following confirmation of the route for the funding to the project from the Ministry of Housing, Communities and Local Government. The announcement has been welcomed as a clear signal of the […]
By Simon McGrath in ME/CFS Research Review. A patient-led petition asked the Dutch parliament to tackle ME properly. It instructed the Government to take action, which eventually led to the Dutch health research agency recommending a €25m biomedical research programme. Patients are playing a central role in the process. The Dutch national health […]
By John Pring in Disability News Service. The government has been accused of a “totally reprehensible failure” after its new Disability Unit failed to make a single announcement in more than three months, while more than 20,000 disabled people were dying from COVID-19. The unit was set up last year to “break down the […]
By Judith Heumann and John Wodatch in the New York Times. Ms. Heumann is a disability rights activist. Mr. Wodatch is a civil rights lawyer. This month as the 30th anniversary of the Americans With Disabilities Act approached, we asked two prominent figures in the disability rights movement, Judy Heumann and John Wodatch, where they thought […]
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.
