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 […]
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 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 John Pring in Disability News Service. The equality watchdog failed to consult its own committee of disabled advisers before deciding not to investigate deaths of benefit claimants that have been linked to the Department for Work and Pensions (DWP). It came as disabled activists and relatives of disabled people whose deaths have […]
By John Pring in Disability News Service. Disabled people have faced discrimination in every area of their lives from the beginning of the coronavirus pandemic, new research by a user-led organisation has found. The research by Inclusion London reveals that the COVID-19 crisis is impacting disabled people across every part of their lives. Disability News […]
By John Pring in Disability News Service. At least 10 disabled MPs and peers have signed a letter calling on the prime minister to ensure that the government improves its support for disabled people in its response to the coronavirus pandemic. The letter, sent to Boris Johnson by the all-party parliamentary group for disability and […]
By John Pring in Disability News Service. Disabled people have told MPs how they have been hit particularly hard by the impact of the COVID-19 crisis on the benefits system. The Commons work and pensions committee carried out a survey of benefit claimants as part of an inquiry into the response of the Department […]
By John Pring in Disability News Service. Keir Starmer is set to face pressure from the disabled people’s movement to commit his party to keep a series of pledges he made during his successful campaign to replace Jeremy Corbyn as Labour leader. Among the most striking of those pledges was to back calls by […]
By John Pring in Disability News Service. The government has blamed the coronavirus crisis for its decision to close a temporary fund that was set up to support disabled people with the extra costs of running for political office. One disabled politician has described the permanent closure of the EnAble fund as a “kick in […]
By John Pring in Disability News Service. The government is facing claims that its continuing and repeated refusal to consult with disabled people’s organisations (DPOs) has contributed to its failure to protect disabled people’s rights in responding to the coronavirus crisis. Successive governments since 2012 have been criticised for their failure to engage […]
By Susan McKinstery in Huffpost. I was born in 1981, the year declared “International Year of Persons with Disabilities” by the UN. It heralded the beginning of the “Decade for Persons with Disabilities”, which saw the beginning of what would go on to become landmark equalities legislation and political policy making. The intention for […]
By Yvonne Roberts in The Guardian. Two years ago the United Nations released the findings of a secret inquiry into state-level violations of the human rights of disabled people. Its conclusion was that a “human catastrophe” was under way. In every sphere, including employment, housing, education and social security, disabled people are hugely disadvantaged. Shamefully, […]
By John Pring in Disability News Service. Disabled people’s organisations have reacted with suspicion and some hostility to the outgoing prime minister’s attempt to shore up her “legacy” with a series of disability-related announcements. Although some of the measures announced by Theresa May (pictured) were welcomed, many user-led organisations questioned why she had left […]
By Benjamin Kentish in The Independent. Ministers have been condemned after admitting that they have not carried out any assessment of the impact that a no-deal Brexit would have on the lives of people with disabilities. The government was accused of having “ignored” people with a disability after admitting that “no formal assessment” had been conducted, despite fears over a […]
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 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 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 […]
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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. 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: 2.5 million tbc.
France: 150,000 - 500,000. From a member of Millions Missing France: Our country does not yet recognise ME, but estimates are between 150,000 and 500,000.
Canada: 560,000. A 2017 Statistics Canada survey revealed that more than 560,000 Canadians reported that they have the disease.
Sweden: 40,000 tbc.
Australia: 250,000 From Emerge Australia.
Italy: 500,000 tbc.
Portugal: 40,000 tbc.
Romania: 80,000 tbc.
Slovakia: 20,000 tbc.
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.
