Blogs

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 […]

How Nature And My Dog Changed My Outlook On Illness

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    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 ?

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    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 […]

Beauty In The Dark

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  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 […]

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, […]

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

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  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 […]

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

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  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 […]

ME News In Brief – March 2019

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  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

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  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 […]

You Don’t Look Sick: ‘My Skin Condition Causes A Lot Of Pain But I Gave Up My Blue Badge Because Of Abuse’

Invisible Illness

  By Laura Abernethy in Metro.     Welcome to You Don’t Look Sick, our new weekly series about invisible illness and disabilities. There are 13.9 million disabled people in the UK, but for many of them, you would have no idea anything is wrong. Lots of people suffer from debilitating symptoms and daily struggles […]

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’

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    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 […]

Part II: ME/CFS, Sepsis And Glycocalyx

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  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

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    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, […]

Wheelchair Friendly Walks In Yorkshire

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    From Fenetic Wellbeing.   Can you remember a sunny bank holiday? Us neither. But on the off-chance the heavens don’t open, we’ve put our heads together and come up with some cracking wheelchair friendly spots for a day out in Yorkshire. Can you remember a sunny bank holiday? Us neither. But on the […]

How To Track Down Your Old Pensions

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    From SAGA Magazine.   There’s more than £400 million of unclaimed pension savings in the UK, here are our top tips for tracing your old pension pots… More and more people are moving jobs several times throughout their working life and accruing multiple pension pots along the way. With the disappearance of the […]

Shock, Hypoxia & ME/CFS: Part I

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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 […]

To Those Who Say Chronically Ill People Are ‘So Lucky’ Not To Work Full-Time

Chronic Illness

  By Alexandra Ellen in The Mighty.   Have you ever had the “joy” of experiencing a conversation similar to this on a Sunday afternoon? “What time do you start work tomorrow?” “Ummm, I don’t work on Mondays.” “Ahhh, you’re so lucky!” I lost count of the number of times I’ve had similar conversations. I […]

Trial By Error: The Cost Of MUS

David Tuller

    By David Tuller, DrPH In January, I wrote about the problematic online training course developed by the Royal College of General Practitioners and touted by Steve Brine MP as addressing the “misconceptions” about ME (or CFS/ME, as the online course calls the illness). The lead author of the course was Carolyn Chew-Graham, a professor of general […]

Enhancing Blood Volume In Chronic Fatigue Syndrome (ME/CFS) And Fibromyalgia

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    From Health Rising.   “You guys are about a litre short in blood volume, ok? If I’m sitting at five litres, you’re sitting at four. So, you’re really, really sensitive to blood volume changes. If you’re a little dry, you crash. ” Dr. Nancy Klimas.   The low blood volume finding in chronic […]

How To Move Forward When You’re Grieving Your Life Before Chronic Illness

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  By Paige Wyant in The Mighty.   When many people hear the word “grief,” what often comes to mind are the complex emotions a person experiences in the wake of a loved one’s death. Though this is certainly an accurate representation of grief, it is by no means the only one. Grief is much […]

Pacing Is A Simple Concept. So Why Do I Find It So Hard ?

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      By Jo Moss in A Journey Through The Fog.   Living with a chronic illness like ME/CFS creates many challenges. Along with the multitude of symptoms, we also have to learn to adapt to the restrictions placed on our lives and to manage our limited energy levels. The term “pacing” crops up […]

My Label And Me: I’m Not Tired And Lazy, I Have ME

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  By James Wilson in The Metro. you’re just a bit tired,’ says my friend. ‘Just have another beer, you’ll be fine’. Yep, I am tired but probably not as they, or you, know and understand it. I can’t rest and get my energy back like you can and, as much as I’d like to, […]

21 People Describe What Sensory Overload Feels Like

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  By Melissa McGlensey in The Mighty.   Sensory overload happens when too much sensory stimulus is occurring at once — it can be triggered by a crowded room, a TV turned up too loud, strong aromas, fluorescent lighting — or a hundred other things. It’s often associated with certain diagnoses like autism, sensory processing disorder, chronic fatigue syndrome, fibromyalgia, post-traumatic stress […]

Amy Carlson – An Ally To The ME Community

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    By Adriane Tillman in #MEAction.   Allies are critical to the success of any movement and even more so in the case of people with myalgic encephalomyelitis (ME). So many people with ME are bedridden or housebound and unable to participate in some advocacy and activist actions. While we at #MEAction work hard to […]

The ‘Energy Bubble’ Analogy That Can Help Explain Pacing With A Chronic Illness

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    By Christina Baltais in The Mighty.   Pacing is about energy conservation, both physical and emotional. When you’re living with a chronic illness, it’s an essential skill for preventing flare-ups or “crashes.” This “energy bubble analogy” can be useful to help you visualize and understand the limits of your energy, and help you explain them […]

We Need To Stop Talking About Chronic Illness In This Particular Way

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  By Annie M. In The Mighty.   Have you ever noticed how people talk about illness, even mild illnesses like colds? We often say we are fighting them. We battle colds and fight the flu. We call our friends with scary medical conditions “warriors,” and we encourage them in their “battle” against their illness. It’s true […]

Trial By Error: Professor Sharpe’s Retraction Requests

David Tuller

    By David Tuller, DrPH After this month’s release of the Health Research Authority’s PACE analysis, Professor Michael Sharpe sent e-mails to at least two US publications requesting a retraction or major correction of critical articles. Professor Sharpe’s e-mails accused the writers involved of suggesting that PACE was “fraudulent.” This accusation was not true. In […]

The Basics: A Guide To Learning, Sharing And Making A Difference In Chronic Fatigue Syndrome (ME/CFS)

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    By Cort Johnson in Health Rising.   Welcome to Health Rising. This page is designed to give you basic information on chronic fatigue syndrome (ME/CFS) and provide opportunities for you to learn about it, share your experiences, and participate in bringing about the end of this disease. It is focused on the U.S. […]

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