By John Pring in Disability News Service. The government’s continuing failure to allow benefit appeals to be heard via video conferencing is discriminating against disabled claimants, say welfare rights experts. Many disabled people are being forced to ask for their tribunals to be postponed, because they are only being offered a telephone hearing, […]
By John Pring in Disability News Service. The three companies that carry out disability benefit assessments for the government have made almost no progress in the last year on alerting local authorities to concerns about claimants whose safety is at risk, according to a disabled campaigner. Last year, freedom of information responses from […]
By Lauren Harte in the Belfast Telegraph. Communities Minister Deirdre Hargey has vowed to improve the process for those applying for Personal Independence Payments (PIP) following a call to make the troubled system “fair and accessible for those who genuinely need it”. When PIP was introduced in Northern Ireland in 2016, replacing Disability […]
From Welare Weekly. Benefit officials working for the Department for Work and Pensions (DWP) have altered or binned thousands of work capability assessment reports submitted by healthcare professionals, it has been claimed. DWP officials reduced qualifying points awarded during face-to-face assessments and in some cases binned the reports entirely, according to media reports. […]
By John Pring in Disability News. Disabled campaigners travelled from across the country this week to show support for a fellow activist as she took on justice ministers in the high court over the ruinous costs disabled people can face when they take disability discrimination cases. If she wins, Esther Leighton could give hope to thousands […]
By John Pring in Disability News Service. Thousands of disabled people could have had their benefit claims stopped unlawfully, campaigners believe, after a judge found that letters sent out by government contractors were failing to stress the serious consequences of failing to attend a face-to-face assessment. Upper tribunal judge Nicholas Wikeley said he […]
By Aditya Chakrabortty in The Guardian. Early this summer, a national newspaper published a string of curious articles. Under the logo Universal Credit Uncovered, the features promised readers of the Metro the truth about this most notorious of all benefits. The series began with a giant advert wrapped around the cover of the paper, coupled […]
From Independent Age. Many older people are missing out on thousands of pounds that they’re due. Our free guides can help you boost your income by claiming benefits you may not have realised you’re entitled to – even if you have savings or own your own home. To read the rest of this story, click […]
By Samantha Renke in The Metro. Living with a disability in the UK today means living in a state of perpetual fear, feeling unheard, patronised and at times like a burden – and it can take a huge toll on your mental health. I was born with a genetic condition called Osteogenesis Impefecta […]
By Nina Grant in The Metro. At 18, after six months in a psychiatric unit, I first claimed disability benefits. A social worker helped me apply for supported housing, as well as for the benefits needed to cover my rent and cost of living. Because I was so young, I didn’t […]
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 […]
By Nicola Slawson in Huffington Post. Universal Credit claimants are left “swimming against a tide of unmanageable repayments” when they are forced to take loans ahead of their first payments, it has been claimed. The comments come as the government has responded to a damning report by the Work and Pensions select committee, which […]
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 John Pring in Disability News Service. The roll out of the government’s much-criticised universal credit benefit system has not been delayed and will proceed as planned, the Department for Work and Pensions (DWP) has confirmed. Reports at the weekend suggested that new work and pensions secretary Amber Rudd had decided on a […]
By Simon Rushton in iNews. Officials behind Universal Credit are being criticised for failing to track data on people who want to apply offline. Universal Credit is the government’s first digital-only service, and claimants must apply online for the Department of Work and Pensions benefit. But there worries that the system is excluding […]
By John Pring in Disability News Service. The government could be forced into court to defend its failure to make the much-criticised universal credit benefit system accessible to disabled people. A parliamentary meeting held to mark the International Day of Persons with Disabilities (IDPD) on Monday – and to call for universal credit […]
By Jo Moss in A Journey Through The Fog. We all know the anxiety inducing feeling of the dreaded brown envelope falling on your door mat. Being assessed, or reassessed for health and disability benefits, is both exhausting and scary. We are often made to feel we are faking it or exaggerating our symptoms. […]
By Katie Campbell in UNITE. Leaked documents seen by the BBC have shown that the government will once again delay the rollout of Universal Credit, with Esther McVey saying that a “small amount of people – maybe 10,000” will be moved onto the system in 2019. Despite the government’s plans to have Universal Credit fully up-and-running […]
by Katie Campbell in UNITE. Esther McVey has told the BBC that one million disabled people will get “significantly more on Universal Credit,” despite previous evidence showing that disabled people face losing out on up to £4,000 every year under the new system. Speaking to the BBC yesterday, McVey admitted that the Tories have made some “tough […]
By John Pring in Disability News Service. A charity has refused to criticise the Department for Work and Pensions (DWP) over four deaths linked to universal credit, hours after a minister announced it would receive tens of millions of pounds to support claimants on the new benefit system. Work and pensions secretary Esther McVey […]
By Paul Lewis in SAGA Magazine. As we age, minor niggles with our health can become a serious – and costly – problem. However, there are state benefits to help. The rules are complex, but don’t be put off. You have paid taxes all your life for others and now is the time […]
From Age UK. What is the benefits calculator? Our personalised benefits calculator can tell you if you’re potentially entitled to claim extra money, based on the information you provide – such as whether you’re single/in a couple, where you live or if you care for anyone. It’s easy to use, quick, free and all […]
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INTRODUCTION
The York ME Community is an ME Support and Awareness Group. What I believe we need is awareness of the illness to be raised and for that we need people to learn about ME and tell others. There are ME charities, and if in the future you or your friends or business wish to do a charity run or whatever in aid of ME, I will happily help and support that aim. (more…)
The figures below show the numbers of people with ME recorded in each country. This will be updated as and when fresh information is sourced. It is also acknowledged that it is difficult to be accurate as ME is still not recognised, therefore not recorded in very many countries.
It’s said that 17 million people in the world have ME/CFS – but this figure is no more than a rough guess based on crude prevalence estimates from developed countries (0.2 to 0.4%, including children) applied to the 7 billion inhabitants of planet Earth! In fact, rigorous, robust estimates of the occurrence of the illness in each country are needed, particularly to plan healthcare and allocate funding for research.
If you can update this information, please let me know the figure, plus source if known. I will be looking to add figures and comments from people living in those countries, so as to have a better feel for how things are there.
Where I give a figure tbc, it means this is the figure I have heard, but am seeking a source to confirm.
UK: 260,000. The National Institute of Health and Care Excellence (NICE) estimates the prevalence of CFS / ME to be 'at least' 0.2% to 0.4% of the UK population, implying up to 1 in 250 people affected, or 260,000 in total.28 Sept 2017
(The University of Bristol research in 2011 estimated the number of 11 to 16 year olds with ME at one in 100).
Ireland: 10,000 - 19,000. According to The Irish ME/CFS Association.
USA: 836,000 - 2.5 million According to an Institute of Medicine (IOM) report published in 2015, an estimated 836,000 to 2.5 million Americans suffer from ME/CFS, but most of them have not been diagnosed.
Canada: 560,000. A 2017 Statistics Canada survey revealed that more than 560,000 Canadians reported that they have the disease.
Sweden: 40,000. Riksföreningen för ME-patienter (RME, the Swedish ME Association) estimates that approx 40 000 people in Sweden are living with ME/CFS. Most of them have not been diagnosed.
Australia: 250,000 From Emerge Australia.
Italy: 500,000 tbc.
Malta: Due to unwillingness to diagnose and lack of knowledge on ME, it's difficult for doctors to give an accurate figure. Some doctors say it is approx. 0.02 % same as in Europe.
Portugal: 40,000 tbc.
Romania: 80,000 tbc. Based upon other European ratios, there are as many as 80,000 people living in Romania with M.E.
Slovakia: 20,000 tbc. It's estimated that there are approximately 20,000 people with ME living in Slovakia (in line with other European ratios).
Denmark: 10,000-20,000. Not recognised as a physical illness. Denmark has no national registration of ME patients. The estimate of 10-20.000 patients rely on NICE estimate that 0,2-0.4% of the population has ME. Diagnosing, treatment and health authorities recognition of ME is close to non-existent, even though their parliament voted to change all that...back in March, 2019.
Austria: Not recognised as a physical illness.
Worldwide: 17 million. This figure is given by NHS Choices.
15 - 30 million. This figure is given by #MEAction.
Paul Beresford Conservative, Mole ValleyTo ask the Secretary of State for Health and Social Care, how much Government funding was allocated to biomedical research into myalgic encephalomyelitis in the financial years (a) 2017-18, (b) 2018-19 and (c) 2019-20.
Helen Whately Minister of State (Department of Health and Social Care)In addition to the funding set out above, the National Institute for Health Research, funded through the Department, and the Medical Research Council have recently announced a £3.2 million award to fund research into potential genetic connections to ME/CFS. The project will analyse samples from 20,000 people with ME/CFS to search for genetic differences that may indicate underlying causes or increase the risk of developing the condition.
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
Link to Written Question In Full
The above shows an imbalance when viewed against the cost of ME to the UK economy. A 2017 report from the think tank 2020 health and the Optimum Health Clinic Foundation reported that the cost of CFS/ME to the UK economy was at least £3.3 billion in 2014/15
To read the ME Research Summary 2019 by ME Action covering the previous ten years, click on the link below:
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:
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.
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 ! Due to lockdown, there has been very little opportunity to access anywhere, but hopefully this will change in the not too distant future !
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).
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.
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, please make it this one,
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 ?
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.
THE FOLLOWING EVENTS ARE CURRENTLY SUSPENDED, EXCEPT FOR THE ME AWARENESS HOUR, WHICH IS ON TWITTER. STAY SAFE, BE KIND.
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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.
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.
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.
