By Cort Johnson in Simmaron Research. The failed Rituximab trial might seem like the death knell for autoimmunity in chronic fatigue syndrome (ME/CFS) but it’s not – not by a long shot. While the B-cells that Rituximab targeted are at the heart of much autoimmunity, T-cells can also cause autoimmune diseases. They also play a […]
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 […]
By David Tuller, DrPH *October is crowdfunding month at Berkeley. I conduct this project as a senior fellow in public health and journalism and the university’s Center for Global Public Health. If you would like to support the project, here’s the place: https://crowdfund.berkeley.edu/project/22602 The UK’s National Institute for Health and Care Excellence, or NICE, […]
By Cort Johnson in Health Rising. The Immune Hole That Produced ME/CFS? (and who knows – maybe long-hauling as well) Somehow Lenny Jason got a hold of some recovery data from the 1918 flu! The data suggested that 20% of those affected may not have fully recovered, and fatigue was one of the most […]
From Emerge Australia. Established in October 2020, Open Medicine Foundation Australia (OMF Australia) is an Australian foundation set up to support biomedical research through the establishment of a new ME/CFS collaborative research centre in Australia. OMF Australia was founded by Emerge Australia in partnership with the Open Medicine Foundation, meaning that Australia is now […]
By Marc Churches from Australian Motor Sports. Australian MotoGP legend Casey Stoner has opened up on his health issues as he continues to battle with Chronic Fatigue Syndrome (ME/CFS). The two-time MotoGP World Champion revealed last year that he had been diagnosed with the debilitating illness, which impacts on sleep, causes profound fatigue […]
From Retraction Watch. A BMJ journal has retracted and replaced a paper on chronic fatigue in children after admitting that it misrepresented the nature of the research in the editing process. But the article has drawn scrutiny beyond merely the characterization of the analysis. The paper, “Cognitive–behavioural therapy combined with music therapy for chronic […]
By Sylvia Colt-Lacayo in Huffpost. Recently, I was in the grocery store, minding my own business, when I heard, “Daddy, what’s wrong with her legs?” I looked to the right and saw a young boy with a now-embarrassed father, who quickly shushed his son. The dad made eye contact with me, trying to relay […]
By John Pring in Disability News Service. The recession associated with the pandemic is likely to be having a disproportionate impact on disabled employees, just as it did in the last recession, according to academics. They have examined the impact on disabled people during the recession of 2007 to 2009, and believe it is […]
Nadine Sander-Green in The Globe and Mail. By the time I reached my early thirties, I had climbed one of the world’s highest volcanoes in Ecuador, won an arm-wrestling contest in Dawson City and trekked through the Himalayas for a month straight. All I had to do was ask my body to do something, and […]
By Cort Johnson in Health Rising. Fatigue has been a mystery to the research world. Take multiple sclerosis (MS) – one of the most fatiguing diseases known. Fatigue is often one of the first symptoms that shows up in MS and it’s often the most troubling symptom MS patients experience, yet the fatigue in MS isn’t […]
By Jamie Ducharme in Time. Afew years ago, Jaime Seltzer was helping coordinate research projects, grant applications and funding for a Stanford research group studying a condition called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Up to 2.5 million Americans, including Seltzer, have ME/CFS, and yet it felt like almost no one paid attention to […]
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..
From M.E. Awareness New Zealand. PACING “to avoid doing something too quickly or doing too much at one time, so that you have enough energy left to complete an activity” — PACING – MACMILLAN DICTIONARY This dictionary definition is a good starting point for understanding Pacing for ME. In a nutshell, Pacing for […]
By Chloe Laversuch in YorkMix. Work on dualling the outer ring road – the A1237 – could start in 2023 and be complete by 2025. Under the plans the single carriageway would be dualled in both directors between the A19 at Shipton Road to A1036 at Little Hopgrove. Five roundabouts – at Clifton […]
From Healthwatch York. Healthwatch York at York CVS is keen to recruit at least three new Steering Group members, including a new Chair. Steering Group members play an essential role in setting our strategic direction and checking that we are on track to deliver our aims and objectives. The coronavirus pandemic has highlighted and […]
From the Matt Ridley Online Blog. A groundbreaking new study points to a cheap, safe, effective way of tackling Covid My article with MP David Davis, for the Telegraph: As we face six tough months of curfews, isolation and economic misery, with vaccines a distant hope, testing struggling to control the virus, and […]
By Deborah Marshall in Griffith News. The National Centre for Neuroimmunology and Emerging Diseases (NCNED) has been awarded $1.46 million in National Health and Medical Research Council funding for research into myalgic encephalomyelitis /chronic fatigue syndrome (ME/CFS). Part of Griffith University’s Menzies Health Institute Queensland , the centre’s researchers will investigate potential diagnostic tests as well as suitable […]
By David Tuller, DrPH *October is crowdfunding month at Berkeley. I conduct this project as a senior fellow in public health and journalism and the university’s Center for Global Public Health. If you would like to support the project, here’s the place: https://crowdfund.berkeley.edu/project/22602 The pandemic has played havoc with everything, including the timeline of the development […]
From YorkMix. Your Shoes will invite audiences to explore York from the perspectives of different York citizens. How is it to go shopping as a mother? How does someone with a disability experience the city? How does a Refugee experience York differently compared to someone who has lived here their entire lives? Through asking […]
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 […]
From BMA. Doctors who contracted COVID, and thought the symptoms would be over in weeks, tell Jennifer Trueland about their continuing pain, exhaustion and – sometimes – struggle to be believed. Richard Campbell had a demanding job as a consultant rheumatologist in a busy London trust at the start of the year. In his […]
From Physios for M.E. We’re delighted to present another young person’s story about how they are managing education alongside ME. Sian is 15 years old and has written this for us – thank you so much Sian! “One of the most important things I found I could do for myself, in terms of pacing […]
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.
