ME Support and Awareness in York – The York ME Community

11 Hidden Realities (And 4 Hidden Gifts) Of Myalgic Encephalomyelitis

Mighty

    By Lisa Alloto in The Mighty. You can read quite a bit on the internet about the symptoms of myalgic encephalomyelitis. But there’s so much more beyond the clinical terms and symptom lists. Here are just a few of the hidden realities, along with a few hidden tricks! 1. You will likely grieve, and grieve […]

Where Is Bros Star Craig Logan now ? – (ME Story)

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    By Tom Eames in Smooth.   Craig Logan was one third of the biggest boyband of the late 1980s, Bros. But he soon quit the band, leaving Matt and Luke Goss as the sole members. But what has he been up to since? Craig began his career as a bassist in the pop band Bros. His nickname […]

Red Blood Cell Deformability Is Diminished In Patients With Chronic Fatigue Syndrome

Blood Cells

    By Authors: Saha, K. Amit et al in IOS Press Library.   BACKGROUND: Myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a poorly understood disease. Amongst others symptoms, the disease is associated with profound fatigue, cognitive dysfunction, sleep abnormalities, and other symptoms that are made worse by physical or mental exertion. While the etiology of the disease is […]

Dear Bug… I Don’t Survive at Being An Adrenaline Junkie

Jessica

  By Jessica Taylor-Bearman.   Dear Bug… I Don’t Survive at Being an Adrenaline Junkie It’s interesting when you learn things about yourself that have probably always been there but I’d not even noticed. This week I’ve been in London, well for four days – a mini week! I really wanted to attend The Author School and […]

Living Life ‘Light’ With ME

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LIVING LIFE ‘LIGHT’ WITH ME When ME strikes We know the score Our lives won’t be As they were before We learn to pace Wind things down Cut things out Try not to drown Living on the edge of fun As if your life is all but done In the shadows, out of sight Living […]

My Wife Isn’t Tired

ME

  By Paul James.   I’m not writing this for me, I’m not writing this for Amy my wife either, today I was made aware of a lady who suffers not only from ME but also from her family’s disbelief and ignorance – so this is for her.   I need however, to start with […]

Trial By Error: “Talk Is Cheap,” Patients Tell NIH

David Tuller

    By David Tuller, DrPH. Earlier this month, NIH director Francis Collins and other agency officials held a meeting with five representatives from #MEAction. According to the group’s post about the meeting, the goal was “to discuss accelerating research in order to more rapidly provide diagnostics and treatments to people with ME.” Specifically, #MEAction urged […]

Refill Your Water Bottle In York For Free: New Scheme Planned

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  By Chloe Laversuch in YorkMix. Refilling your water bottle in York city centre could become easier next year, under council plans to encourage more businesses to offer free drinking water. City of York Council is supporting a campaign to encourage people to cut their use of disposable plastic bottles and cups, as well as drink more […]

Ten Ways To Prove That Exercising Will Not Cure Chronic Fatigue Syndrome (ME/CFS)

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By Cort Johnson in Health Rising.   Your family, friends and even your doctor may, probably will at some point, prod you to get moving.  They think that if you can just get on your feet again and start exercising, you’ll be so much better. It’s irritating to hear and just reinforces how isolated you […]

Top York Eateries To Offer Menu From £10 During ‘Restaurant Week’

Food

    By Chloe Laversuch in The Press.   The event, which aims to help residents discover different places to eat by offering set menus at some of the city’s best eateries from £10 per person, is being organised by York Business Improvement District (BID). Director Andrew Lowson said: “People are getting value for money and the […]

Surviving, (Hiding), And Thriving With Cognitive Impairments

Lisa

  From the Chronic Illness: Realistic Optimism Blg y Lisa Alloto.   As the years have gone by with Myalgic Encephalomyelitis (ME), the cognitive impairments have grown.  My brain is slower to process information and conversations.  For example, it takes longer to find the right word, to remember someone’s name, and quite often to even to […]

Filling “The Landscape Of Unmet Needs” In ME/CFS and FM: The Bateman Horne Center Pt 1

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    By Cort Johnson in Health Rising.   This is the first of a couple of blogs that will celebrate visionaries within the ME/CFS/FM communities who took action to make their visions real. Dr. Bateman was doing yeoman’s work serving the ME/CFS/FM community in her medical practice in Salt Lake City, Utah.  She could […]

Not All Disabilities Are Visible……..

Invisible Illness

One of my favourite Christmas presents this year, a sticker for the car from my wife and daughter…… There is a need for a Government backed, nationwide TV and Radio educational campaign to raise awareness of Invisible Illnesses and Disabilities.    

Why Christmas Annuals Are Still A Favoured Gift – 195 Years After The First One Was Published

danbno

  By David Anderson in The Conversation. As a devoted reader of weekly comic The Dandy, the gift of its annual was an essential part of Christmas morning. In the midst of the festive excitement, I can remember clearly the thrill of discovering my first annual under the tree in 1983, and filling out the […]

Humans of ME/CFS – Keith B

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From Solve ME/CFS Initiative. My ME/CFS story is 30 years long. It began in 1985 when I was stricken with a virus that never left and evolved in its effects. In the early days, I had to go back to bed after cleaning my teeth. Now, fatigue is not so much a problem but still […]

Deconditioning Denied: Could A Large ME/CFS Study Put An End To The Deconditioning Myth ?

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  By Cort Johnson in Health Rising. The Deconditioned ME/CFS Patient? A huge (n=345) 1998 UK study set the stage. The smaller, less muscular hearts and carotid arteries found in ME/CFS made it clear – at least to those researchers – that both physical and cardiovascular deconditioning was present in ME/CFS. They recommended a graded exercise program to […]

Do You Have Family Or Friends You Haven’t Heard From In A While ?

'Hello Stranger'

    At this time of year we hear the cry go up for keeping in touch with family and friends.  Maybe to also call on someone elderly nearby. Whilst I totally agree with these sentiments, maybe we should be doing this throughout the year.  It’s too easy to forget those who were in our […]

Trial By Error: Australian Draft Report Seeks Comments

David Tuller

    By David Tuller, DrPH in Trial By Error. In an eagerly awaited draft report, an Australian advisory committee on ME/CFS has called for the development of up-to-date domestic clinical guidelines and an increase in biomedical research into the pathophysiology of the illness. The draft report, which could have a major impact on health policy […]

Christmas Can Be Isolating For Young Carers – They Need Time To Be Children

Young-Carers

    By Jo Aldridge in The Conversation.   Most children look forward to the Christmas holidays as a time for fun and families. But for some young carers – children who provide care for someone in their family who is ill or disabled – the Christmas holidays are a mixed blessing. Dani* is one […]

Life With A Chronic Illness: The Unspoken Truths

Lisa

  By Lisa  Alloto in her Chronic Illness: Realistic Optimism Blog.   Life with any chronic illness is filled with unending challenges, whether its finding proper medical care, a way to afford it and your daily expenses, or maintaining employment.  On top of that, and most of all, you must deal with the chronic illness itself […]

Some Local Information That Might Be Useful Over The Christmas Period

Information

With Christmas just around the corner, we have collected a range of information about changes to local services to keep updated throughout the festive period. Local Changes (Please click the subheading for further information) Christmas Bus Services Date Park and Ride Routes All Other Routes Monday 24/12/18 (Christmas Eve) Weekday timetable with 18:00 finish Weekday […]

2018 Ramsay Class Receives Supplemental Funding To Support Innovative Projects From New Investigators

Funding

    From Solve ME/CFS Initiative.   Solve ME/CFS Initiative (SMCI) is pleased to announce that we have received funding to support additional Ramsay studies for the 2018 Ramsay Award Program Class that will be led by Dawei Li, PhD, an Assistant Professor at the University of Vermont, and Malav Trivedi, PhD, an Assistant Professor at Nova Southeastern University. Both Dr. Li […]

Making The Outdoors Accessible To All

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By Scout Ambassador, Julia Bradbury in Scouts. Scout Ambassador Julia Bradbury’s TV presenting has taken her all over the world, walking and climbing across Europe and Africa. Now she tells us all about The Outdoor Guide – an online resource she set up with her sister Gina that brings together information for walks all around […]

Now Is The Time For York To Truly Embrace Pedal Power

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    From Yorkmix.   That’s the message from York Cycle Campaign – which says the plans to dual York’s outer ring-road offer a unique opportunity to create cycle superhighways into the centre of the city. The campaign says City of York Council’s ambition to draw traffic away from the centre of York means road […]

Trial By Error: The New Interferon “CFS” Study

David Tuller

    By David Tuller, DrPH I haven’t had time to cover the new and wildly over-hyped study about prolonged fatigue–and purportedly about “chronic fatigue syndrome”–that was published this week in the journal Psychoneuroendocrinology. Thanks no doubt to the involvement of the Science Media Centre, this mildly interesting piece of research has received widespread media attention. […]

Community Roundup – End-Of-Year, 2018

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From #MEAction.   As always, our community continues to amaze us with its tenacity, creativity, intellect, hard work and generosity. Enjoy a round-up of some of the community happenings these past few months where people with myalgic encephalomyelitis (ME) around the world continue to fight for recognition, treatment, care and dignity. Austrian broadcast station @ATV […]

Plans Go In For 500 Homes Next To Askham Bog

David Attenborough

  By Mike Laycock in The Press.   PLANS have been submitted for more than 500 homes on land next to a York nature reserve described by Sir David Attenborough as ‘irreplaceable.’ Barwood Strategic Land LLP is seeking outline permission for up to 516 houses, a sports pavilion, landscaping, roads and an ‘ecological protection and […]

When You’re Stuck In The Middle Of ‘Sick’ And ‘Well’

Chronic

  By Cherilyn Schutze in The Mighty.   Stuck in the middle of sick and well. That’s how I feel. Chronic illness is never easy, whether you are the person who’s sick, or the caretaker or family member of a person with a protracted illness. Before I became ill, I was very busy multi-tasking, care-taking, mothering, wife-ing, and working. […]

Trial By Error: How BMJ Enabled Bristol’s Ethics Exemptions

David Tuller

      4 DECEMBER 2018 By David Tuller, DrPH Earlier today, I sent the following e-mail to Dr Fiona Godlee, editorial director of BMJ. I cc’d Carol Monaghan MP, Darren Jones MP, and Nicky Morgan MP. I also cc’d Teresa Allen of the Health Research Authority. ********** Dear Dr. Godlee— As you know, I […]

Thinking Of Others……

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      It occurred to Pooh and Piglet that they hadn’t heard from Eeyore for several days, so they put on their hats and coats and trotted across the Hundred Acre Wood to Eeyore’s stick house. Inside the house was Eeyore. “Hello Eeyore,” said Pooh. “Hello Pooh. Hello Piglet,” said Eeyore, in a Glum […]

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