Myalgic Encephalomyelitis
By Ryan Holmes in Matza Review. A singer who has ME has launched her debut album, after spending two years recording it whereas bedbound, with it presently quantity two within the Amazon Best Sellers chart forward of Taylor Swift. Kara Jane Spencer, 29, from Shirebrook, Derbs., was recognized with the debilitating situation when she was simply […]
By Jennie Jaques. This is an article to assist patients with the long-haul symptoms following COVID-19. My article is likely most relevant to Long Covid sufferers in their ‘post-viral’ stage – i.e those who find themselves still battling the symptoms after 4 months. But the sooner the advice can be understood the better. We will […]
By Valerie Eliot Smith in Law and Health. “The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.” ~ Valerie Eliot Smith 2019 ***************************** Note: this blog works across all devices but can be viewed most easily on a computer or tablet. Thank you for visiting […]
By Adrienne Dellwo in Very Well Health. You still hear that chronic fatigue syndrome (ME/CFS) is a “mystery illness,” but that viewpoint is becoming dated. The nature and mechanisms of the disease are beginning to take shape, thanks to the ongoing efforts of researchers. Over the years, especially recent ones, we’ve learned a huge amount. Some of that […]
From ME International. Some of these links refer to ME/CFS as per the IOM which is a broad criteria encompassing many patients who may not have ME as defined by the ICC. For choosing proper research candidates, the IC Primer states on page ii: “…the ICC [International Consensus Criteria] select patients who exhibit explicit multi-systemic […]
By Simon McGrath in ME/CFS Research Review. A patient-led petition asked the Dutch parliament to tackle ME properly. It instructed the Government to take action, which eventually led to the Dutch health research agency recommending a €25m biomedical research programme. Patients are playing a central role in the process. The Dutch national health […]
The York ME TGA Inter-Company Fantasy Football League The York ME Community runs an Inter-Company Fantasy Football League sponsored by TGA Mobility. This is to help raise awareness of the illness that affects around 250,00 people in the UK, and 800 to 1,000 people of all ages in the York area alone. Companies enjoyed […]
To help highlight those missing from their lives, this being Severe ME Awareness Week. Millions Missing Tommy missing from the five a sides A different postman today Jenny not out, not seen her about Maybe she’s just gone away No Mary at the Bingo Charlie, where is that guy? Rang the teacher, couldn’t […]
By Brian Hughes in The Science Bit. The people who want you to think that everything is “all in your mind” are back, their schtick now revised and updated for a COVID-19 world. Here’s the Daily Telegraph: Some local coronavirus outbreaks could be ‘mass hysteria’, Joint Biosecurity Centre warns Some local coronavirus outbreaks may just be mass […]
From Star News. In a cruel twist, many Covid-19 survivors could be affected by a once-obscure chronic fatigue condition, initially termed the Tapanui flu, and whose existence was once ridiculed and denied.Emeritus Prof Warren Tate (73), of the University of Otago biochemistry department, officially retired recently but is continuing his molecular-level research into […]
From Genetic Engineering & Biotechnology News. Biomedical engineers at Tufts University School of Engineering have developed tiny lipid-based nanoparticles that incorporate neurotransmitters, which can help to carry drugs, large molecules, and even gene editing proteins across the blood-brain barrier (BBB) and into the brain in mice. The researchers believe the new neurotransmitter-derived lipidoids—or […]
From Health Rising. Ritalin Is… a central nervous system stimulant. Created in 1954, Ritalin has been in use for over sixty years. (Check out a History of Ritalin here). It was first FDA approved in 1955 to treat ‘hyperactivity’ and later was approved to treat attention deficit hyperactivity disorder (ADHD). Ritalin increases extracellular levels […]
By John Pring in Disability News Service. The government has been accused of a “totally reprehensible failure” after its new Disability Unit failed to make a single announcement in more than three months, while more than 20,000 disabled people were dying from COVID-19. The unit was set up last year to “break down the […]
From the Open Medicine Foundation. Open Medicine Foundation (OMF) is excited to announce a new collaborative study between the ME/CFS Collaborative Research Center at Uppsala, Sweden and the Harvard ME/CFS Collaboration. This study focuses on biomarkers for long-term neurocognitive outcomes. It provides an excellent opportunity to understand the mechanism of long-lasting viral-induced cognitive complications, commonly referred to […]
By Helen Salisbury, GP in BMJ. Author affiliations helen.salisbury@phc.ox.ac.uk Follow Helen on Twitter: @HelenRSalisbury In the heat of the pandemic, news reports focused on patients who were severely ill, in hospital and on ventilators. Fortunately, this was a minority of patients, and most people with covid-19 remained at home—some of them horribly unwell but not […]
From The Week. As the UK’s daily death tolls fall and the immediate threat of Covid-19 recedes, doctors are warning that the outbreak may lead to a long-term surge in cases of a debilitating and untreatable disease. Chronic fatigue syndrome, also known as myalgic encephalomyelitis or CFS/ME, is an “illness with a wide […]
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 […]
Accessing carer groups from home You can now access our carer support groups and activities online as we continue to work within government guidance, and explore ways we can offer our face to face groups in the future. If you’d like to take part in any of our groups/activities, and would like help setting up […]
By Dr. Anthony Komaroff in Center For Solutions For ME/CFS. On July 21, 2020, the results of a proteomics study by the Center for Solutions for ME/CFS was published by the journal PLoS ONE. Proteomics uses new technologies—that have become available in the last two decades—to precisely identify large numbers of proteins and measure their levels. The measurement […]
My Diary And ME Busy days, life’s ablaze Diary’s full to the brim So much that I want to do But can’t fit everything in Hectic sport and social life Days out with daughter and wife Coaching football, archery session Being taught a badminton lesson Then an entry when not feeling good Turned down invitation, […]
By Dr Charles Shepherd, Hon. Medical Adviser, ME Association. I am aware that some people with ME/CFS have a number of concerns about the amount of time and effort we are devoting to people with Post-COVID Fatigue and Post/Long-COVID Syndromes. In particular: — the possibility that people with post-COVID fatigue and post/long-COVID syndromes are […]
By Judith Heumann and John Wodatch in the New York Times. Ms. Heumann is a disability rights activist. Mr. Wodatch is a civil rights lawyer. This month as the 30th anniversary of the Americans With Disabilities Act approached, we asked two prominent figures in the disability rights movement, Judy Heumann and John Wodatch, where they thought […]
By Charlotte Stephens, Research Correspondent, ME Association. We show below brief summaries of the research studies about ME/CFS that have been published in the last week, followed by the abstracts from those studies. All research relating to ME/CFS can be located in the Index of ME/CFS Published Research which is correct to the end of June […]
By Danni Watts, Journalist. Content warning: Contains an image of an ME patient, at her request, which readers may find distressing. There are growing numbers of Covid-19 patients reporting ongoing symptoms, for some lasting months after the initial infection. The cluster of post-viral symptoms commonly includes extreme fatigue, brain fog and widespread pain. For ME patients this […]
By Cort Johnson in Health Rising. “If you look anecdotally, there is no question that there are a considerable number of individuals who have a post-viral syndrome that in many respects incapacitates them for weeks and weeks following so-called recovery. They report symptoms such as brain fog, difficulty concentrating and fatigue that resemble the […]
By DAVID TULLER and STEVEN LUBET in Stat News. Some survivors of acute bouts of Covid-19 experience a range of persistent medical issues — some lasting for weeks, or even months — that include profound exhaustion, trouble thinking or remembering, muscle pain, headaches, and more. One survivor described it as feeling like she was “hit by a truck.” Anthony Fauci, the […]
by David Tuller, DrPH Aura-reader and Tarot expert Phil Parker, also known as the founder of the Lightning Process, has posted a video on YouTube of an “ME/CFS success story.” Without knowing anything about Amy’s situation or medical history beyond what she shares, I have no reason to disbelieve her testimony of recovery from […]
by University of California – San Diego Mylagic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling and complex illness. Affected persons often cannot pursue ordinary activities—physical or mental—because of an incapacitating loss of energy and other symptoms, and may find themselves confined to bed or house-bound for years. Anyone can develop ME/CFS, though it most commonly […]
By Darcel Rockett in The Chicago Tribune. As the world continues to watch the number of COVID-19 cases increase (and daily records being broken), patients with myalgic encephalomyelitis, aka chronic fatigue syndrome, want to tell those recovering from coronavirus to listen up. COVID-19 patients may be at risk of developing the neuroimmune condition ME/CFS that depletes one’s energy. ME/CFS, […]
A Picture Of ME In my mind there is a picture That fades some more each day It shows how my life used to be Before M.E. came to stay A picture full of colour Of fun, of laughs, of life Not of where I am today Of worries, pain, of strife My picture […]
From ME Research UK. In May, a Bill was introduced into the US Congress (H.R. 5057) by Representative Jaime Raskin calling for “the expansion, intensification, and coordination of the programs and activities of the National Institutes of Health with respect to post-viral chronic neuroimmune diseases, specifically myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), to support the […]
By Katarina Zimmer in The Scientist. A handful of viruses have been associated with long-term, debilitating symptoms in a subset of those who become infected. Early signs hint that SARS-CoV-2 may do the same. When 32-year-old artist Hannah Davis fell sick in late March this year, her symptoms were so severe that even watching […]
By Katie Meehan, Social Media Manager, The ME Association. In the run-up to Severe M.E. Week (3rd August), we’re looking for people with Severe M.E. who would like to tell their stories. We want to talk about the key issues that affect arguably the most neglected section of our community, and plan on […]
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:
To go to the Government's Disability Benefits Advice Guide, click on the link below:
MEpedia is a project founded by MEAction, powered by the patient community, and built by volunteers including patients, students, and researchers. We are crowd-sourcing a knowledge base on the history, science and medicine of ME, CFS, and related diseases. Jump in by clicking 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.
We are a group of physiotherapists in the United Kingdom with a special interest in Myalgic Encephalomyelitis (ME).
Our website provides resources for physiotherapists, people with ME and parents or carers of those with ME.
If you wish to apply for a Blue Badge in the York area, or wish to know if you qualify, click on the link below:
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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.
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:
Helpfulpeeps is a platform that allows people in any given area to ask for and offer help to one another. Although this is a nationwide facility, by adding your street name, the system automatically drops a pin on that location and you only see posts from a 20 mile radius. You have the option to narrow or widen this radius. I hope this is a useful facility for members of our Community.
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 aim is to share ideas in promoting various disability services, whilst continuing to raise Awareness of ME through both organisations. Through their #Think Access group and our own group, The York Access and Mobility Club, we will be looking at accessibility issues in the York & Harrogate areas, with the aim of advising on suggestions for change.
Disability Action Yorkshire aim to find solutions for disabled people whatever their aspirations. Whether you are a disabled person or support someone who is, they are here to support you. They provide a range of services, from training to accommodation and help with independence, among others. To find out more about Disability Action Yorkshire, 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 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
Access Your Life is a site run by Felix and Lauren, with a little input from Fliss, the dog!
The site is full of great information that I feel will benefit many within The York ME Community and beyond.
To go to Access Your Life, click on the link 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 !
Debbie North, our TOG wheelchair walk designer uses an off-road mobility scooter, also called an all terrain hopper to access the countryside and wants to inspire other wheelchair users to do the same through her wheel friendly walks.
Wheelchair friendly walks are a selection of walks that the TOG team have carefully selected for families using pushchairs, wheelchairs or bicycles.
The Jen Brea ME film 'Unrest', about her story and struggle with Myalgic Encephalomyelitis (ME) is available on Amazon and iTunes and through the Unrest UK Store on DVD and Blu-Ray by clicking on this link: Unrest site
Please spread the word through your GP, MP, Company HR Teams and any other people of influence you may know. Thank 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).
For confidential and independent advice for everyone on welfare benefits, debt, housing, employment, consumer rights and much more.
This is open to any organisation looking to have a bit of fun whilst supporting your local community. Our 4th season is pretty much done ! 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 more information, or just to register your interest through the email address supplied.
![old-telephone[1]](http://www.york-me-community.org/wp-content/uploads/2015/10/old-telephone1-300x240.jpg)
Helplines
COVID-19 Helpline for York - 01904 551550
or email: covid19help@york.gov.uk
NHS Health Enquiries (non emergency): 111
Samaritans: 01904 655888
Mind UK: 03001 233 393
Domestic Abuse: 03000 100 110
York Hospital: 01904 631313
Patient Transport Service: 01904 630080
Benefits Service: 01904 551556
Accessibility
Dial & Ride: 01904 551441
Shopmobility: 01904 679222
York Wheels: 01904 630080
Delivery Services
Virtual High St: www.yorkhighstreet.com
Alligator Wholefoods: 01904 654 525
Millie's Greengrocers: 07766 313 122
Food Circle: 07511 717 946
Miller Food Service: 01904 655 368
Poppy Caterers: 01347 878 628
Sheila's Greengrocers: 07470 308 824
M&K Butchers: 01904 639 300
Badger Hill Butchers: 01904 411 897
Burnholme Fisheries: 01904 421 360
Milk (Richard Cann): 07773 348 354
Services
York Electricians Ltd: 01904 373 045
Plumbtech: 07703 567 027
Yorkshire Plumbing: 08006 125 234
Local MP's
York Central Rachel Maskell: 01904 784847
York Outer Julian Sturdy: 01904 784847
Thirsk & Malton Kevin Hollinrake: 01347 666880
Councillor Keith Aspden: 01904 555 314
If you are a member of the elderly community or indeed somebody caring for an elderly person, this guide supplied by Covonia will give you important information on how to avoid getting sick, and how to care for coughs and colds should they happen.
The Changing Places Consortium launched its campaign in 2006 on behalf of the over 1/4 of a million people who cannot use standard accessible toilets. This includes people with profound and multiple learning disabilities, motor neurone disease, multiple sclerosis, cerebral palsy, as well as older people.
To use the toilet in safety and comfort, many people need to be able to access a Changing Places, which have more space and the right equipment, including a height adjustable changing bench and a hoist.
To find out more, click on the link below to go to the Changing Places website.
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 !
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.
A TRUE STORY BY JESSICA TAYLOR-BEARMAN
Book Description: From a darkened world, bound by four walls, a young woman called Jessica tells the tale of her battle against the M.E Monster. The severest form of a neuro immune disease called Myalgic Encephalomyelitis went to war with her at just 15 years old.
To order the book through Jessica's site, click on the link below:
This book is also now available at York Library
To read the ME Research Summary 2019 by ME Action covering the last ten years, click on the link below:
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 |
There is a great need for the training of those with a Duty of Care to those with Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS). For those in Healthcare, Education or Business with this Duty of Care, this E-Learning Course is the one for you.
To learn more, click on the link below:
AccessAble in York provides information on Shopmobility, Talking Signs, Dial & Ride, York Wheels and accessible Hotels, Restaurants, Public Toilets and a whole lot more in our city. To find out more before setting off for York, 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.
Euan’s Guide is the disabled access review website used by disabled people to review, share and discover accessible places to visit. The charity was founded in 2013 by Euan MacDonald, who is a powerchair user, and his sister Kiki. As Euan’s access requirements changed, both went in search of recommendations for accessible places to go, but a platform for this kind of information didn’t exist. Built as a friendly and honest alternative to hours of web searching and phone calls before visiting somewhere new, Euan’s Guide now has thousands of disabled access reviews and listings for places all over the UK and beyond.
To go to Euan's Website, click on the link below:
Help us raise money for The York ME Community to pass onto Invest in ME Research every time you shop online, and it doesn't cost you a penny !
By using the link below, when you shop online with a huge number of shops, they will pass a percentage of your purchase cost to our fund. THIS MONEY IS DONATED BY THE RETAILERS, NOT YOU !
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.
Mike Harley is a very special guy who's aim was to run a marathon in each EU country to raise awareness and funds for Invest in ME Research. Please visit his site to learn more, especially since our exit from the EU has meant a revision of his plans !
