By Kate Stanforth in WheelAir. Kate Stanforth shares her story, from being an active young girl, to developing a chronic illness and navigating ESA, DWP and public opinion. I’m going to open this by saying that this is the most honest blog I have ever written. It’s on a subject that I know lots […]
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. The Department for Work and Pensions (DWP) has admitted that it has no idea how many of its 19 “disability champions” are disabled people. The disability sector champions – covering areas such as banking, gaming, arts and culture, media, music and retail – are supposed to drive […]
By Dan Bloom in The Mirror. The Disability Benefits Consortium claims the adverts are “deliberately misleading” and contain “obvious exaggerations”. Charities have reported the government to the advertising watchdog over “deliberately misleading” promotions for Universal Credit. The Disability Benefits Consortium, a coalition of more than 80 disability charities, lodged a formal complaint to the Advertising […]
By Aditya Chakrabortty in The Guardian. How to sell the unsellable? How to pretend utter chaos is a plan coming together? How to persuade the public, who just refuse to buy it, to at least keep on paying for it? I believe I have found the answer. It comes in the form of an internal […]
Written by Kitty S Jones in Politics and Insights. I co-run an online advice and support group for people going through Personal Independence Payment (PIP) and Employment and Support Allowance (ESA) claims, assessments, mandatory reviews and appeals. Recently there has been a spike in people being reassessed for their awards of both kinds of […]
By Ros Wynne Jones in the Mirror. The long waits for help under UC continue to drive impoverished families below the breadline. In May I wrote about the distressing case of two men – one dying and one disabled – fighting Esther McVey in the high court over cuts to their support due to Universal […]
By John Pring in Disability News Service. A regulator has been told there are “issues of concern” about the way it deals with complaints against health and care professionals, including those who write dishonest benefit assessment reports. The Professional Standards Authority (PSA) agreed in January to look at concerns about the way […]
By John Pring in Disability News Service. Cross-party MPs have raised a series of concerns with work and pensions secretary Esther McVey about the government’s treatment of disabled people on out-of-work benefits. Members of the Commons work and pensions select committee were questioning McVey (pictured) more than a year after her government introduced cuts of nearly […]
From Disabled Go News. The government’s decision to extend the contracts of two discredited companies that carry out disability benefit assessments has been branded “appalling”, “shocking” and “a complete con”. The move has also been criticised by the Scottish government. Sarah Newton, the minister for disabled people, told MPs in a written statement this week that […]
By Steve Topple in The Canary. A panel of judges has backed the Department for Work and Pensions (DWP) into a corner. So much so that it’s being forced to review the benefit claims of countless disabled people. Another defeat for the DWP On Wednesday 30 May, the legal firm Garden Court North […]
By John Pring in Disability News Service. Imposing benefit sanctions on disabled people is counter-productive, ineffective and “probably too dangerous”, a trio of experts have told MPs. The Commons work and pensions committee also heard that the failure of the Department for Work and Pensions (DWP) to research the impact of its sanctions […]
From My Disability Matters. The Department for Work and Pensions (DWP) is causing “muddle” and “confusion” by refusing to clarify which disabled people will have their claims re-examined through its mammoth programme of disability benefit reviews. Sarah Newton, the minister for disabled people, announced last week that DWP would review 1.6 million personal independence payment […]
By Martin Williams in The Herald. A key parliamentary debate has been secured by a Glasgow MP over a controversial medical trial which patients with myalgic encephalomyelitis (ME) say makes them even more ill. The £5m medical trial part-funded by the Department of Work and Pensions led to a scientific row with it being […]
By Samuel Osborne in The Independent. Private firms carrying out controversial disability assessments have received a £40m increase in funding despite widespread concerns with the system, it can be revealed. A freedom of information request by The Independent found the Department for Work and Pensions (DWP) paid Independent Assessment Services (formerly known as Atos) and Capita nearly […]
By Frances Ryan in The Guardian. What happens when the system designed to help you is actually hurting you? This is the question I keep coming back to as I look at the newly released evidence of widespread failings in the disability benefit system. Complaints about the personal independence payment (PIP) assessment process rose by […]
By John Pring in Disability News Service. A welfare rights advisor has described how at least 30 local benefit claimants with terminal cancer have had their claims rejected in the last year, with every one of the decisions later overturned by an appeal tribunal. In every case, the claimant has been terminally-ill […]
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By Dan Bloom in The Mirror. Iain Duncan Smith has been accused of insulting the poor by making a way round his 45p-a-minute benefits hotline a “well-kept secret”. The Work and Pensions Secretary faced outrage when the Mirror revealed Universal Credit claimants were paying premium fees to access an 0345 hotline. With average […]
By John Pring in Disability News Service. Levels of satisfaction among claimants of the government’s new disability benefit are far lower than for other benefits, according to new Department for Work and Pensions (DWP) figures. The survey found that only two-thirds (68 per cent) of personal independence payment (PIP) claimants were satisfied with […]
By Frances Ryan in The Guardian. The Department for Work and Pensions (DWP) knows a good day to bury bad news. Veiled under the New Year holiday – in a consultation set to close next week – the government is quietly examining how to cut eligibility for its disability benefit, personal independence payment (PIP), which […]
As reported in Disability News Service. Proposals by two groups of English GPs that they and their colleagues should no longer be responsible for providing “fitness to work” certificates for their patients have alarmed disabled activists. GPs from Kent’s local medical committee (LMC) have proposed in a conference motion to fellow doctors that they should […]
Story by John Pring in Disability News Service. Ministers and civil servants were “ruthless” and “reckless” in forcing through their new “fitness for work” test and refusing to abandon it even after they were told of the harm it was causing, according to a former government adviser. Professor Geoff Shepherd, who was one […]
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.
