Personal Stories

Mike’s EU Marathons – Amsterdam Report

Mike Amsterdam

    From Mike Harley’s EU Marathons Website.   Ahead of my trip to Amsterdam I’d made contact with a number of Dutch patient groups and associations who had all been very interested in supporting my challenge.  I interviewed M.E patients Anil and Frank along with campaigner and carer Rob, click here to read what they had […]

Can Positivity Cure Any Disease ?

Anil

    By Anil van der Zee, in his Capture, Dance, Words Blog.   As long as I have been suffering from my illness I’ve read and have also had some people tell me that the cause and course of my disease rests in some way in my own hands. I have always found that remark […]

Humans of ME/CFS

ME Drained

  By Laura O, in Solve ME/CFS Initiative.   I stared feeling run down and not quite myself nearly four years ago. I had all these strange things happen to my body. I just couldn’t get my head around it. The symptoms I had/have scared me and at times I actually thought, “I’m dying.” Who gets this […]

My Life As ‘Little Miss Brain Fog’

Brain Fog

    By Jane Shaw in The Mighty.   Like its name, myalgic encephalomyelitis is also rather complicated and extraordinary. The illness made Little Miss Brain Fog feel like Little Miss Dotty, Little Miss Scatterbrain, Little Miss Fickle, Little Miss Whoops, Mr. Bump, Mr. Topsy Turvey, Mr. Forgetful, Mr. Lazy, Mr. Muddle, Mr. Dizzy, Mr. […]

WATCH: Schoolgirl’s Illness Message Goes Viral

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  From Pirate FM News.   A video by a 10-year-old schoolgirl girl who has been battling an illness for seven years is going viral. Shannon Tiday, from Plymouth, has M.E. – Myalgic Encephalomyelitis. It is a chronic condition which sees her suffer from things like vomiting, extreme fatigue and crushing headaches. But now she […]

The Psychological Impact Of Having To Ask For Help

Help

    By Debbie Deboo in The Mighty.   I was diagnosed with ME 15 years ago. Before that I was a confident professional in charge of my own life and completely autonomous. When I got ill I found myself in the difficult position of having to rely on others. I could no longer go anywhere […]

Bottom Of The Ramp

Research Funding

  From The Occupy ME Blog.   In aggregate, 2017 turned out to be the biggest year of ME/CFS funding at NIH ever. But when I scratched the surface, I found bad news buried within the superficially good news. We are still at the bottom of the funding ramp that Dr. Collins promised us, and […]

York Panto Star Berwick Kaler Fights Back After Heart Bypass Operation

Berwick Kaler Panto

    By Mike Laycock in The Press.   Panto legend Berwick Kaler has told how he is fighting back to health from major heart surgery as he prepares for his next show at York Theatre Royal. Britain’s longest serving pantomime dame says he is recovering well following a double heart bypass operation in July, when he […]

The Stunning Yorkshire Landscape, By Dave Zdanowicz

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    From The Yorkshire Times.   Bradford photographer, Dave Zdanowicz is a 34 year old landscape photographer with a passion for his beautiful county. In his own words “I absolutely love landscape photography and I have dedicated the last 3 years of my life travelling around Yorkshire photographing the breath-taking county. This has resulted […]

Too Fatigued To Do Anything – Director Jennifer Brea Exposes The Personal Pain Of A Rare Disorder In The Doc ‘Unrest.’

Jen Unrest

  By Amy Kaufman   Jennifer Brea was a PhD candidate at Harvard University when her mind started to fail her. At age 28, she was already an accomplished academic, a graduate of Princeton who’d moved to Massachusetts to delve into the world of political economy and statistics. But in the midst of her studies, […]

For Patients With CFS, Going To The Bathroom Is Similar To Running A Marathon.

Chronic

    By: Ellen de Visser.   Patient and doctor Mark Vink about Chronic Fatigue Syndrome. Having so little energy that you can only leave your bed twice a day: that’s what CFS can be like. Researchers suggest it’s a mental disease. Nonsense, says doctor and CFS-patient Mark Vink. Mark Vink’s whole world consists of […]

Stanford Medicine X Ignite Talk

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    By Ryan Prior in rtprior.com.   Below is the text of a speech I delivered on the main stage of Stanford Medicine X on September 16, 2017. Giving the speech was a highlight of 2017, and I used the occasion to talk personally about my disease and how it affects my outlook on […]

12 Ways Teachers Can Help Their Chronically Ill Students Be Successful

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  By Katrina Pears in The Mighty.   Life has changed a lot for me over the years of having this illness. I once was top of the class. I worked hard, with lots of extra study, and got the grades I wanted. Being diagnosed with chronic fatigue syndrome meant my hours of activity every […]

‘Unrest’ Puts Spotlight On Disease That Affects Millions, Including Riverside Girl, 12

Jen Unrest

      By Darcel Rockett in The Chicago Tribune If you had to live your life knowing that you have only 20 percent of your energy to expend on any given day, how would you ration out your days? How would you make your decisions if hours and days of pain followed, while trying to recharge? […]

Filmmaker Opens Up About Illness That Doctors Told Her Was ‘All In Her Head’

Jen

  From www.today.com   Jennifer Brea was on her way to earning a doctorate from Harvard when she was stricken with an illness that doctors said was “all in her head.” She is joined live on Megyn Kelly TODAY by her husband, Omar Wasow, and NBC News medical contributor Dr. Natalie Azar to talk about […]

The Mystery Illness That Plagued This Writer For Years

Julie

    By Julie Rehmeyer in Oprah.com.   On Saturday, November 4, 2006, I woke up semiparalyzed. My legs felt lead-plated; the signals instructing them to move seemed to get scrambled on the way down. It was as if someone had sloppily replaced my limbs with those of an elephant and connected only 10 percent of […]

PIP Investigation: Welfare Expert Says Two-Thirds Of Appeals Involve Lying Assessors

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    By John Pring in Disability News Service.   Welfare rights experts have produced evidence that backs up the findings of a Disability News Service (DNS) investigation into the lies told by healthcare professionals in their disability benefit assessment reports. Last week, the two-month investigation revealed how assessors working for the outsourcing companies Capita […]

Unrest: The Hero’s Journey Of Jennifer Brea

Jen

      By Don Schwartz in From The Heart Productions.   As documentary films go, it doesn’t get more powerful than this. A young woman—healthy, happy, intelligent, talented, Hollywood beautiful, married to a loving man, living an adventurous, exciting life—is struck down by a debilitating, apparently incurable disease. This young woman fights back. The disease […]

I Live With Disabling Illness And Chronic Fatigue. It Has Taught Me To Ask For Help.

Help

    By Litsa Dremousis in The Washington Post. Remember the last time your WiFi went out? How you felt alone in an empty world? You tried to restart it yourself, to no avail. Then you called tech support, which was as helpful as pouring glue down a clogged drain. You were baffled that no one […]

As Summer Ends, A Warning To NIH

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  By Adriane Tillman in #MEAction.   Johanna Kaiser, a person who has had ME for decades, sent this open letter over Labor Day to Dr. Walter Koroshetz, director of the National Institute of Neurological Disorders and Stroke (NINDS) and Dr. Francis Collins, director of National Institutes of Health (NIH). Staff member Adriane Tillman only posted the article.  Dear Dr. Walter Koroshetz and […]

Have You Been Unable To Shop Due To Poor Accessibility ?

Accessibility

    By Lottie Jackson in The Guardian.   We want to hear from less-abled people who have experienced difficulties with poor access when shopping in high-street or luxury fashion stores. Britain’s 11.9 million disabled people represent a potentially large untapped consumer market with a perceived spending power of £80bn, yet many clothes shops are completely […]

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