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 […]
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 […]
By John Pring in Disability News Service. Councils and other public bodies across England are failing to consult disabled people before approving “discriminatory” measures designed to aid social distancing and encourage cyclists and pedestrians, say campaigners. They have warned that public bodies are ignoring their duties under the Equality Act, and are making […]
By David Tuller, DrPH Professor Trudie Chalder is a lead investigator of a series of studies of rehabilitative interventions for so-called “medically unexplained symptoms” that have failed to meet expectations but have nevertheless been promoted as demonstrating treatment success. The piece of crap known as the PACE trial is a prime example. Most famously, Professor […]
From BBC News. Large accessible toilets for severely disabled people – known as Changing Places – will be made compulsory for new buildings in England from 2021. Shopping centres, supermarkets, sports and arts venues will be required to include at least one Changing Place, a government spokesman said. The facilities include hoists, changing benches […]
By David Tuller, DrPH. As post-covid syndrome has emerged as a major public health concern, so has the likelihood that members of the biopsychosocial ideological brigades will roll out their typical interventions for the “long-haulers”–patients suffering from profound exhaustion and other symptoms for many weeks and months after getting infected with the coronavirus. The […]
Just to let you know that The York Access and Mobility Club has been renamed The York Access Group. This group will be working with others in the York area to improve disability access to amenities in York, so that we can all enjoy our beautiful city to the full, and to not be restricted […]
By Emily J Hall, Anne Carter and Dan O’Neill in The Conversation. As temperatures begin to warm up, it might be tempting to take your dog for a long walk or run to soak up the weather while it lasts. But it’s important to exercise caution, as dogs can easily develop heatstroke in hot temperatures. […]
By Ruth Fairchild in The Conversation. A recent study found that brown and organic rice sold in the UK tends to contain significantly more arsenic than white inorganic varieties that are often considered less healthy. Arsenic is found in many foods but can be especially concentrated in rice, particularly in the husk, which is removed to […]
By Edzard Ernst in edzardernst.com. The Lightning Process (LP) is a commercial programme developed by Phil Parker based on ideas from osteopathy, life coaching and neuro-linguistic programming. It has been endorsed by celebrities like Martine McCutcheon and Esther Rantzen, who credits it for her daughter’s recovery from ME. Parker claims that LP works by teaching people to […]
ME AND MY LIST The eyes they slowly open A restless night behind Sleep didn’t want to come my way To rest my buzzing mind I gently rise to find my feet Hope the strength is there to greet My legs like stilts, …..no feeling I fall,…… to stare up at the ceiling It’s gonna […]
By David Tuller, DrPH. In this traumatic time, small victories should be savored. Last week, I noticed a tweet from patient and advocate Tom Kindlon about a pamphlet from the Oxford Health NHS Foundation Trust, the entity that oversees NHS services in the Oxford region. Other patients and advocates also flagged it on social media and sent […]
By Cort Johnson in Simmaron Research. The first SARS epidemic in 2003 featuring SARS-CoV now seems like a poor dress rehearsal for today’s SARS CoV-2 outbreak. With just 8,000 cases in total and 774 deaths, (compared to almost 1,000,000 cases and 4,000 plus deaths and rising rapidly) it seems hardly worth including in the same sentence. […]
By Cort Johnson in Health Rising. My, how things change. Less than a month ago, only 70 coronavirus cases had been reported in the country. Our president had just recently announced that the virus was under control. The sun was shining brightly. How naïve we all were. Just a month later, the U.S. leads the […]
From the Equality and Human Rights Commission. Equality law recognises that bringing about equality for disabled people may mean changing the way in which services are delivered, providing extra equipment and/or the removal of physical barriers. This is the ‘duty to make reasonable adjustments’. A duty is something someone must do, in this […]
By BY BONNIE EVIE GIFFORD in Happiful. Accessing public transport should be simple, shouldn’t it? Yet thousands face delays, inequalities in access, a lack of support and understanding. Enough is enough Whether we’re talking about your daily commute or venturing further afield, it’s hard to deny: travel can be stressful at the best of times. Overcrowding, […]
By Michael Cole in The Conversation. It is estimated that there is a staggering £300m worth of medicine unused in the UK every year. But is it safe to take these medicines if they are past their expiry date? Expiry dates are put in place after rigorous trialling and controlled experiments to ensure the safety […]
By John Pring in Disability News Service. A new book by a disabled researcher has detailed the “horrifying” levels of disability hate crime that take place every day on public transport across the UK. David Wilkin says the results of his research are “sometimes startling and almost always distressing” and illustrate the “ongoing […]
By John Pring in Disability News Service. A local authority has become the second in London to set up an independent, user-led commission to investigate the barriers faced by disabled residents. Lewisham Disabled People’s Commission (LDPC) will be led by disabled people and will examine organisational, attitudinal and physical barriers faced by disabled […]
By Liz Johnsin in The Independent. It’s great that major brands are getting serious about inclusion, but initiatives should focus on taking away barriers, rather than forcing marginalised groups to mark out their difference. Sunflower season may be over but Sainsbury’s wants to see more in bloom this autumn following its latest announcement. On […]
By Oliver van Hecke in The Conversation. GPs in the UK carry out over 300m patient consultations every year and at least a quarter of these deal with children. Almost two-thirds of such appointments are for coughs, sore throats, or earaches – illnesses which young children commonly get. Doctors and nurses group these types of illnesses […]
By Lee Bosher in The Conversation. Recent floods in England have been described as unprecedented or even “biblical” events, often with the misguided assumption that they were unavoidable or unpredictable. That is not the case. Over the past few decades, development practice in England has led to more than 300,000 homes being built in […]
The medals glint on Whitehall
The Veterans glow with pride
The country’s politicians
Standing side by side
Rousing words are spoken
Solemn stories told
Politicians sing the praises
Of the old and oh so bold
But as these words all fade away
It seems it's just another day
For every poppy lying by their feet
A veteran sleeps out on the street
TV crews have all gone home
Veterans now left all alone
Returning to a desperate fate
Help them now, don't leave too late
For those who fought and gave their trust
The treatment given is so unjust
Those soldiers held in high esteem
Are being ignored, to an extreme
For those returning from the front
A new war is just beginning
For all those who came back to us
Inside their heads are spinning
A never ending torture
They live each and every day
The horrors they've seen
From the places they've been
Will never go away
The Covenant talks of treating fair
Well, none of that is working
The politicians preen and pose
While from responsibility, they’re shirking
To all in power or wish to be
There’s one thing that you have to see
Our poppies may be packed away
But our veterans’ needs are here to stay
Let’s show the world, let’s lead the way
Let it not be just a remembrance day
Let’s show the care that they deserve
Those who bravely went and served
Don’t let the pride and memories fade
Till it’s time to think of the next parade
From your responsibilities, no retreat
Get our comrades off the street.
Please don’t betray our girls and boys
Please give them all your loudest voice
Give them a home, give them care
Don’t leave them all alone out there
Homes fit for heroes
Lloyd George said
Not cardboard boxes in their stead
Maybe what he had to say
We’ll remember this Remembrance Day.
Bill Clayton
© 2019
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 Fulford York, the details of your local PCSO are below, and he should be contacted in the first instance. If he is not on duty, you may be dealt with by whoever is on duty. If you live in other areas of York, ring 101 and ask for the PCSO covering your area. In all cases, you will be required to give as much information about the vehicle and location as possible. You will NOT need to stay by the vehicle till the police arrive.
Simon Hall
PCSO 5648
North NPT
NORTH YORKSHIRE POLICE
Dial 101, press option 2 and ask for him by his full name or collar number
If using his collar number please state each number individually
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.
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.
