Myalgic Encephalomyelitis

Myalgic Encephalomyelitis

Things I Wish I Knew Before I Bought My First Powerchair For Chronic Illness

Natasha Lipman

    By Natasha Lipman.   It took me a long time to come to terms with deciding to become a wheelchair user, but when I knew that I was ready it was like a switch flicked in my brain. For the first time in years, I had a ‘real job’, and even the few […]

If Your Chronic Illness Is Making You Want to Give Up

Frustration Chronic Illness

  By Candida Reece in The Mighty. Having a chronic illness can mean life can be rough. It means going to the store with only one sock on because you didn’t want to go through the pain to find the other one; or maybe your shirt is inside out, or you have two different shoes, or clothes […]

Migraines And Other Headaches In Fibromyalgia And Chronic Fatigue Syndrome (ME/CFS)

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  By Brent Wells in Health Rising.   If you’ve ever suffered from any type of headache, you know that there is nothing funny about them. However, because migraines and headaches are not fatal and often do not result in permanent disability for most, their importance to public health has long been understated. This is […]

Trial By Error: The CDC’s Pathetic Response To Reuters

David Tuller

    By David Tuller, DrPH The recent Reuters article about the illness, or cluster of illnesses, variously called CFS, ME, CFS/ME and ME/CFS was problematic for many reasons. One of them was the information included from the US Centers for Disease Control and Prevention. In explaining why the CDC dropped its longstanding recommendations for […]

5 Reasons We Should Never Assume Someone Isn’t In Pain

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      By Christina Carrell in The Mighty.   I was sitting in one of those canvas painting classes, waving a paintbrush back and forth in a very amateur attempt to recreate Monet’s “Bridge Over a Pond of Water Lillies” (spoiler: I’m not an artist and the end result bore little resemblance to the […]

CDC The Puppeteer And The UK BPS Connection To Bury ME

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By Gabby Klein in Relating to ME.   Fake Media Attacks on #PwME In the past week, there has been a media onslaught of biased and stinging articles maligning 17 million disabled men, women and children worldwide who suffer from the acquired neurological and immunological disease myalgic encephalomyelitis (ME).  The false media stories about the […]

Mike’s EU Marathons- Cyprus (17.03.19)

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  By Mike Harley. After 6 months since Sofia, I arrived in Cyprus for number 20 after 60 training runs and 400 miles of winter training to kick off year 5 and the first of six marathons in 2019.  Heading into the race I’d run my fastest ever Half Marathon (1 hr 40 in Gloucester) and raised […]

15 Things People With Chronic Illness Mean When They Say ‘I Don’t Feel Good’

Frustration Chronic Illness

  By Veronica Vivona in The Mighty.   Many of those with chronic illness may be used to saying they’re “good” or “fine” when it comes to how they’re feeling. It doesn’t always mean they’re actually good or fine though. It might just be what they’re portraying to the world. They may do this for a variety of […]

Extra Costs With A Disability

Scope

  From Scope.   Life costs more for disabled people and their families. Spending more on essential goods and services like; heating, insurance, equipment and therapies. These extra costs mean disabled people have less money in their pocket than non-disabled people, or simply go without. Therefore, disabled people are likely to have a lower standard […]

Hull Mum: ‘Horror Illness Has Left My Body Feeling Like An 80-Year-Old’s – But No-One Believed Me’

Lost

  By Anna Riley in Hull Live. A Hull mum has spoken of her battle with a health condition people believed she did not have. Nicola Meekin, 39, from Hull, became ill nine years ago when she started suffering from a bad chest infection. But instead of getting better, her sickness worsened. To Mrs Meekin, it felt like […]

Experimental Blood Test Accurately Spots Fibromyalgia

Blood Test

  By Misti Crane in Ohio Stae News.   For the first time, researchers have evidence that fibromyalgia can be reliably detected in blood samples – work they hope will pave the way for a simple, fast diagnosis. In a study that appears in the Journal of Biological Chemistry, researchers from The Ohio State University report success […]

Why ME, Or Yuppie Flu, Is Like Aids Was Once – Misunderstood Or Dismissed As Not Real, And Ignored By Most Doctors

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By Anthea Rowan  in The South China Morning Post.   Twenty million people suffer from myalgic encephalomyelitis, yet there is still no test for it, nor any approved treatment. We talk to a mother whose daughter has the illness, and who has consulted dozens of doctors in search of help. Until my friend Caroline introduced me […]

Which Painkiller ?

Painkillers

  From NHS Choices.   The type of medicines that you need to treat your pain depend on what type of pain you have. For pain associated with inflammation, such as back pain or headaches, paracetamol and anti-inflammatory painkillers work best. If the pain is caused by sensitive or damaged nerves, as is the case with shingles or sciatica, it’s usually treated with tablets that […]

The Brainstem, Vagus Nerve, Neuroinflammation And Chronic Fatigue Syndrome: The VanElzakker Way

Vagus Nerve

  By Cort Johnson in Simmaron Research.   In 2013, Michael VanElzakker produced one of the most intriguing hypotheses to date in ME/CFS. His Vagus Nerve Hypothesis proposed that an infection/inflammation near the vagus nerve was causing it to send an unending stream of messages to the brain, telling it to essentially shut the body […]

Children With Chronic Fatigue Syndrome Often Wait More Than A Year For Diagnosis

Australia

  by Sasha Nimmo Researchers at the Murdoch Children’s Research Institute in Melbourne confirmed that paediatric chronic fatigue syndrome (Fukuda criteria) causes significant disability and little is known about how common the condition is or how it is currently managed in Australia. More than half of children have to wait a year or longer before […]

ME Isn’t Just ‘Exercise Phobia’: it’s A Physical Illness

ME

By Tanya Marlow in The Spectator.   Imagine you’re diagnosed with epilepsy: what would you think if you weren’t referred to a specialist but taken to a psychiatrist to treat you for your ‘false illness beliefs’? This is what happens to Myalgic Encephalomyelitis (ME) patients in the UK. They are told to ignore their symptoms, […]

The Myth Of “It’s All In Your Head”

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  By Abby Pickus in DEPAUL Magazine.  In 1980, a high school English teacher from Wisconsin named Pat Fero went on a trip to England. Healthy and in her 30s, she noticed something was very wrong toward the end of the trip. “We were in this beautiful countryside, and we went to climb a hill […]

Why Is Music So Hard For People With ME/CFS ?

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  By Jody Smith in Pheonix Rising. Oh, how I love music! This magic can lift our spirits and calm our weary minds. Maybe it can even help us heal. Goodness knows, we who live with ME/CFS need these things. We’re probably not getting much of this elsewhere. So if music is so good for […]

Millions Missing

Millions Missing

  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 reach her Didn’t wonder why Jack from the pub Hayley down at the club That […]

How Nature And My Dog Changed My Outlook On Illness

Dales

    By Jack Croxall in Allies Everywhere.   Growing up in rural England I was obsessed with the outdoors. Bug hunting, fossil collecting, and pond dipping were what I spent most of my time doing. But, during my time at university (living in the city of Nottingham and then in London), there wasn’t as […]

Who Reviews ME/CFS Applications For NIH ?

Funding

    By Jennie Spotila in Occupy  M.E.   There is no question that NIH’s funding of ME/CFS research has been minuscule relative to the size of the public health crisis. Review of ME/CFS grant applications at NIH has drawn scrutiny from the public as one contributing factor. The public perception is that the grant review panelists […]

Mike Harley’s Marathons For ME

Mike Harley

  Good luck to Mike Harley who is running 28 Marathons across Europe to raise Awareness and funds for Invest In ME Research.   On Sunday the 17th of March he will be running the Cyprus Marathon.   As always, a huge thanks from everyone in The York ME Community  Mike ! See the tab […]

Beauty In The Dark

Anil

  From Anil van der Zee in Capture. Dance. Words.   For years I’d dreamed of backpacking through Europe, of seeing the Eiffel Tower and the Mona Lisa and the Roman Colosseum. This summer at the age of 28 I finally got to achieve that. But in the shadow of the monuments, many of the […]

There Is Something Right In The State Of Denmark

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        From Invest In ME Research.   Following excellent work by European ME Alliance-Denmark member Dansk ME Foreningen, and work and input by those such as European ME Clinicians Council member Dr Jesper Mehlsen, there is now unified support in the Danish parliament for separating ME G93.3 from Functional Disorders and acknowledgment […]

SEID Is Killing ME

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  From ME Advocacy.   Advocating in the United States for the disease myalgic encephalomyelitis (ME) has reached a new challenge that threatens the very core of the recognition for the disease. While some advocacy organizations have diverged and taken the alarming path of partnering with the US Health and Human Services (HHS) in adopting, […]

Why People With Chronic Illness Can’t Simply ‘Push Through’

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  By Alicia Thompson in The Mighty.   It never ceases to frustrate me to realize how pervasive the “Just Do It” culture is. Whenever I discuss my physical limitations with others, I’m often met with the suggestion that I simply need to “push through.” Which leaves me wondering, what does this phrase really mean […]

Chronic Fatigue Syndrome, ME/CFS

Research

    From Cornell Research.     A million or more people in the United States suffer from myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), but remarkably little is known about the cause of the disease, and effective therapies are lacking. ME/CFS is characterized by debilitating fatigue that is not relieved by […]

What Is ME ?

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  From #MEAction.   Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. It often follows an infection and leaves 75% of those affected unable to work and 25% homebound are bedridden. An estimated 15-30 million […]

Epstein-Barr Virus Induced Gene-2 Upregulation Identifies A Particular Subtype Of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Research Study

      By Jonathan R. Kelly in Frontiers in Pediatrics.   Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a chronic multisystem disease characterized by a variety of symptoms, and exhibits various features of an autoimmune-like disease. Subtypes are well recognized but to date are difficult to identify objectively. The disease may be triggered by infection […]

Life Of Pippa, Spoonie Survival Kits…..And So Much More !

Pippa

  Hi Everyone. ‘My name is Pippa, and I’m a chronically ill writer and blogger at Life Of Pippa. I’m originally from Sheffield, but moved to York for university and have been here ever since! I’ve had ME/CFS since I was a teenager, but was only diagnosed in 2014, following a relapse at the age of […]

Denmark: MP’s Will Vote Whether To Recognise ME As WHO-Defined Disease !

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    From #MEAction.   This past Tuesday, March 12, Danish Health MPs unanimously agreed on a declaration that will recognise myalgic encephalomyelitis (ME) as a distinct disease, remove it from the “functional somatic syndromes” category, and promote the World Health Organization (WHO) diagnostic codes for ME. Parliament will vote on the declaration this Thursday, […]

NIH Brings In New Faces And Looks To The Future In Accelerating ME/CFS Research Conference

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  By Cort Johnson in Health Rising.   Conferences are exciting because they’re virtually the only place one can go to learn about breaking research.  The NIH ME/CFS conference, with its bevy of new faces that’s taking place on the NIH campus itself on April 4th and 5th, certainly fulfills that need. Many of the heavy […]

When Doctors Brush You Off Because They Don’t Know How To Treat You

Doctor

  By Saidee Wynn in The Mighty.   In the TV show “Golden Girls,” a two-part episode titled “Sick and Tired” depicts the character of Dorothy, played by Bea Arthur, approaching a doctor while out at a restaurant. This doctor had earlier dismissed her symptoms as being all in her head and sent her on […]

A Huge Step Forward For ME In The US

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    There’s been a huge step forward for ME in the US. Kaiser Permanente is the largest managed care organisation in the U.S. It’s a forward-thinking organisation with a great reputation – which has got everything wrong about ME/CFS – until now. This article explains how Kaiser Permanente are out to change the way […]

ME News In Brief – March 2019

Science

  From Science For ME.   News – events this coming week ME/CFS International Research Symposium 12th – 15th March, Australia. Many well known ME researchers will be speaking. Emerge has announced that most of the program will be available to watch live and will be available afterwards. No pre-registration is required to watch online. […]

Trial By Error: Who Has The School Study Documents ?

David Tuller

      By David Tuller, DrPH. Update (later on March 4): Because Royal United Hospitals Bath suggested that I “redirect” my request for documents back to Bristol University, that’s what I did. Earlier today, I sent an e-mail to Bristol’s director of legal services. Here’s what I wrote: As you likely remember, I have […]

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