Two things York businesses might want to get involved in at no cost. Join the York ME Community Inter-Company Fantasy Football League to help raise Awareness of those with ME in York. Info at www.York-ME-Community.org . Plus free advertising at the York Access Hub. Visit www.yah.org.uk
Helen Jones explains what ‘Freedom Day’ means for disabled people On so called ‘Freedom Day’, instead of celebratory dancing and drinking, many disabled people were reacting with horror and retreating back into a state of isolation. In fact, one in seven disabled people plan to keep shielding despite the lack of support available from the government to do […]
URGENT – Actions in relation to removal of Blue Badge parking spaces in the city centre. Many of you will have been following recent developments regarding Blue Badge parking. At the meeting of the York Human Rights City Network Steering Group on 15th July, we took the decision to issue a statement in which we concluded that: […]
From York Press. YORK council now offers consultation with Blue Badge holders on the radical changes in the plan for disabled parking in the city. Or have the decisions already been made? This new plan offers very little for those severely disabled people, who, once parked, require a wheelchair or other mobility device to continue […]
From YorkMix. A York café’s profits have plummeted by more than half after a council “technicality” robbed them of their outdoor seating. 52 Broadway Coffee Shop in Fulford, described as a “meeting point” for the local community, has been forced to remove its outdoor seating and the owners have been told they can’t even open their […]
From The York Disability Rights Forum. On Thursday 15th July, York Labour took a motion to a full council meeting (agenda item 8) that seeks to make the city centre fully accessible. The motion passed but with significant ammendments and we will be posting a blog that explores those changes and what they mean for the motion […]
By Andrew Palmer in Yorkshire Times. Plans for new unitary councils in Cumbria and North Yorkshire have taken an important step forward today following approval from Local Government Secretary Robert Jenrick. The plans will move the areas away from a two-tier system of county and district councils to unitary councils, strengthening local leadership and transforming […]
By Jasmine Andersson in iNews. A council ballot turned sour when two councillors were blocked from voting in an accessibility debate — because they are disabled. Councillors Katie Lomas and Ashley Mason were told by York City Council they had “a prejudicial interest” in vote on improving accessibility in the town centre because they are Blue Badge holders. […]
City of York Council and Access Discrimination. You may recall from a previou post that I mentioned how City of York Council had barred Blue Badge Holders from the city centre. This temporary situation supposedly brought in due to Covid-19 restrictions is now to be made permanent. A debate on the subject of access was […]
The aim of the Hub is to have somewhere for both the residents of York, and visitors to go to when they want to find somewhere that’s accessible to them, despite their disability. To make this happen, we welcome all businesses to advertise for free on this site through completing the Contact Form. You will […]
There’s a new website launching in York soon called the York Access Hub. It will offer free advertising to York businesses including text, photos and a little information as to how accessible your business is to the disabled community. The idea is that it will be the one stop shop for visitors to York, either […]
From City Of York Council. City of York Council are hosting an online workshop with cyclists and disabled people who use cycles as a mobility aid in York city centre. About this event Over the past year we have been talking to groups and individuals who have been impacted by the footstreets policy in York […]
The City of York Council Licensing and Regulatory Committee met on 26th April. On the agenda (item 6) was a report about businesses reopening with pavement cafés which stated there were no equality implications surrounding this. We strongly disagree. We took our opportunity to speak at the meeting and sent the statement below to the members of […]
From York Disability Rights Forum. We invited Make it York and City of York Council to tell us about the outside seating that’s being introduced as part of the plans to reopen the city. Here you can find out about the ways that disabled access has been incorporated into those plans. As well […]
By Graham Clark in the Yorkshire Times. Welcome to Yorkshire, and the Amaury Sport Organisation (ASO) have confirmed that the 2021 Tour de Yorkshire will now be postponed until 2022. The difficult decision has been made after in-depth and constructive discussions with race organisers ASO, and also after detailed consultation with all the tourism […]
By Elki in York Disability Rights Forum. Elki lives in York and relies on using her Blue Badge to be able to park near enough to the places she needs and wants to go. In this Member’s Voice post, Elki writes about what she sees as the dangers of reducing disability visibility in York. Disability […]
By Rachel Roberts in YorkMix. Where can you get the best fish and chips in York? It’s a big question, and we got a lot of answers! With more than 600 responses on our Facebook post asking for recommendations for the best places to get fish and chips in York, you won’t need to […]
From YorkMix. He has travelled the world to document history, often for his popular TV programmes. But one place stands above all others, in the view of historian Dan Snow. “I am coming to York – the city with the greatest history in Europe,” Dan said today. He’s been in the city recently, he told […]
From YorkMix. A mum whose dream of reopening an historic York shop could be dashed by planners has launched a petition to support her cause. Last August Sara Winlow bought the property which used to house South Bank Stores on Balmoral Terrace, close to the racecourse. The shop had long since closed, and she […]
From YorkMix. BBC Radio York is facing major cutbacks as the corporation aims to make £25 million of savings. Under the plans the BBC is to cut 450 jobs in its English regional TV news and current affairs, local radio and online news. Look North will have just one presenter and Radio York will have just three daytime […]
From YorkMix Sport. York City are ready to ‘grasp with both hands’ the opportunity to bring fans back to games. When England comes out of lockdown, stadiums are to be allowed to welcome limited numbers of spectators, if they are in a Tier 1 or 2 area. Stadiums in Tier 1 will be […]
There’s a new group in town ! The York Disability Rights Forum has been set up by those in the Disabled Community of York to help make life a little easier for others whose live are affected by a disability or by restrictions placed upon us by our environment, in and around York. We […]
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..
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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 York Access Hub is here to Inform the Disabled Community of places in York that are accessible to them when visiting York. This includes parking, shops, pubs, restaurants, cinema, accessible toilets and so much more. We also Invite York businesses to enjoy free advertising on our Website. To learn more, visit https://yah.org.uk/
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
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.
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:
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
This is open to any organisation or individual looking to have a bit of fun whilst supporting your local community. We're recruiting teams for our 6th season right now ! The aim is simply spreading ME Awareness whilst having a bit of fun along the way, so why not join us ?
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).
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:
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.
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:
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.
