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 […]
By Jasmine Hearn and Stella Bullo in The Conversation. What [do] I mean by sitting in a pit of fire? You’ve got every nerve ending that’s just going hellfire, and you just don’t know what to do with yourself. Forty-two year old Emma has experienced chronic pain from a spinal cord injury for […]
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 Brian Hughes in The Science Bit. An invited, non-peer-reviewed guest editorial in the BMJ has claimed that behavioural interventions for “complex conditions” (such as ME or CFS) should not be judged using the customary criteria — and that the relevant studies should not be evaluated as though they were proper randomised controlled trials — […]
Posted by BJGP Life. Charles Todd qualified as a GP in 1981 and then spent twenty years working in Zimbabwe. He recently retired as a GP partner in Buckinghamshire. IN MY FIRST JOB AFTER QUALIFYING in 1977 as a house physician in cardiology, on call frequently involved “clerking” mostly middle-aged men having heart attacks and admitting them […]
From Living Streets. Caroline lives in a seaside town in England and is a member of one of our Local Groups of volunteers. As a wheelchair user, Caroline is passionate about improving streets and the access to them for everyone. In normal times, Caroline’s favourite things are being with friends, volunteering and seeing the […]
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 Cort Johnson in Health Rising. This blog is one of a continuing series of blogs that are attempting to peer into the future and see what treatments possibly await us. This blog provides an overview on CoQ10 – what forms work best and how to take it – and then takes a look at […]
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 John Pring in Disability News Service. The BBC is to mark the 25th anniversary of the passing of the Disability Discrimination Act (DDA) next month with a series of dramas, documentaries, news packages and discussions. Among the month-long season will be a series of six 15-minute dramatic monologues, written, directed and performed by disabled people. […]
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 Jennifer Crystal, MFA in Harvard Health Publishing. A common refrain during the COVID-19 pandemic is, “I’m so tired.” After months of adjusted living and anxiety, people are understandably weary. Parents who haven’t had a break from their kids are worn out. Those trying to juggle working from home with homeschooling are stretched […]
M.E. MOT Woke up today It’s not gone away This beast, it’s here for good Thought maybe a dream But a nightmare it seems I’d sleep through it all if I could As another day dawns There’s something more going on The pain’s a bit harder to stand It’s tougher to face, when it’s […]
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 […]
By Cort Johnson in Health Rising. Fatigue has been a mystery to the research world. Take multiple sclerosis (MS) – one of the most fatiguing diseases known. Fatigue is often one of the first symptoms that shows up in MS and it’s often the most troubling symptom MS patients experience, yet the fatigue in MS isn’t […]
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 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 […]
Katharine Cheston discusses the isolation, disbelief and stigma experienced by people with poorly understood medical conditions Autobiographical accounts of illness tend to follow a similar script. Typically, they open with an interruption: new symptoms render the normal abnormal, precluding what had previously been taken for granted. These symptoms are recounted to a healthcare professional: […]
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 Caroline Elizabeth in the Frozen Amber Blog. Finding acceptance while holding on to hope with a chronic illness is like walking a tightrope, especially as the years grind on. Hope is a vital life force that propels us, whereas acceptance allows us to discover new ways of living within the moment. Clearly […]
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 […]
STICK WITH IT….. In life we like to fit right in To mix in with the crowd Not to shout, not stand out Not to be too loud But sometimes things just come along That force us into change I’m talking Chronic Illness Making life so strange When M.E. hits, it hits you […]
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.
