ME Symptoms

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 […]

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 […]

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

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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 […]

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 […]

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 […]

Some Claims That London 2012 Changed The World Are Nonsense, Says Disabled Peer

Disability Dice

  By John Pring in Disability News Service.   One of Britain’s greatest Paralympians has told a parliamentary meeting to beware of claims that London 2012 “changed the world” for disabled people. Baroness [Tanni] Grey-Thompson (pictured) was speaking at a parliamentary meeting held to discuss the need for more to be done to enable disabled […]

It’s Time To Pay Attention To “Chronic Fatigue Syndrome”

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  By Diane O’Leary in BMJ Blogs. Professional and public debate about myalgic encephalomyelitis/chronic fatigue syndrome(ME/CFS) has reached a new pitch.  A London Times article in August described the “acrimonious scientific row” that’s erupted in the UK now that the US Institute of Medicine, National Institutes of Health, and Centers for Disease Control insist that ME/CFS is not a psychosomatic […]

Sleep Deprivation Can Mimic Chronic Fatigue

Fatigue

    From Blue Mountain Gazette.   The reason for fatigue can be difficult to pin down, be it due to an underlying illness, a mental health issue, or a new baby in the house. But fatigue is more than just tiredness. Chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME) commonly affects the nervous, gut, […]

No. 1 Pacing Tip: How To Unlearn The “Completion Compulsion”

Pacing

    By Julie Holliday in ProHealth. There is nothing in our once healthy previous lives that can prepare us for what’s involved in getting good at pacing––at least in the way that the very limited energy of illnesses like ME/CFS, Fibromyalgia and Lyme disease demands. Pacing to someone healthy, might mean something like keeping […]

Trial By Error: Stupid Studies

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    By David Tuller, DrPH. Boy, it’s hard to keep up with all the stupid studies coming out! But that’s no reason not to take a look at a couple of them. (In both cases, I’m just making a few comments. Much more could be said about each of these studies. You can read […]

Using A Cane With An Invisible Disability

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  By Kit O’Connell in Approximately 8,000 Words Blog.   I thought I’d write for a moment about what it means to use a cane as a person with an invisible disability (fibromyalgia). Invisible disabilities are life-altering health conditions which are nonetheless not always visible to a normal observer. Even a trained medical professional might miss […]

Why I Gave Up Trying To Be The ‘Good Patient’

Chronic

    By Alexis Redenbach in The Mighty. We’ve all seen the movies: the patient stoically braves the struggles of treatment and only gets angry one time, in a huge but righteous burst of frustration. The person in a traumatic accident is told they will never walk again but by sheer force of will, they somehow […]

DVLA Driving Licence ALERT: Medical Conditions You Need To Inform The DVLA To Avoid A Fine

Driving Licence

By Luke John Smith in The Express.   MOTORISTS in the UK are required to inform the DVLA about a number of medical conditions as they could affect the way you drive and you could be fined £1,000 if you fail to do so.   Motorists could receive a fine of up to £1,000 for […]

Part II: ME/CFS, Sepsis And Glycocalyx

Blood Cells

  From Syndrome A.   To recap from the previous blog post “Part I: Blood Flow in Sepsis & ME/CFS”, ME/CFS looks like a lot like sepsis and sepsis is an inflammatory illness of blood vessels. The blood vessel problems in sepsis interfere with oxygen delivery to cells. The particular kind of blood flow problem that you find in […]

Allodynia: A Rare, Distinct Type Of Pain In Fibromyalgia And ME/CFS

Chronic Pain

    By Adrienne Dellwo in Very Well Health.   Allodynia is a rare type of pain, generally on the skin, that’s caused by something that wouldn’t normally cause pain. This pain type is frequently associated with fibromyalgia, and some people with chronic fatigue syndrome have it as well. Other conditions associated with allodynia include neuropathy, postherpetic neuralgia (shingles), and migraines. Outside of these conditions, […]

Government Is Failing On Disabled Women’s Rights, UN Is Told

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    By John Pring in Disability News Service.   Activists have told a UN committee how the UK government is failing to address the significant barriers and human rights violations faced by disabled women in accessing social security, justice, jobs and health services. Eleanor Lisney and Rachel O’Brien, from the disabled women’s collective Sisters of Frida, were […]

Shock, Hypoxia & ME/CFS: Part I

Nervous system

From Syndrome A.   When I first got sick with ME/CFS, I was a teenager. I was quite baffled when I suddenly became too exhausted to make it to classes, stopped sleeping almost entirely and started sweating profusely. I sweat raindrops: huge drops of sweat rolled down my sides constantly. No antiperspirant was a match […]

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