Personal Stories

Covid 19 Coronavirus: Kiwi Expert On Covid Survivors Affected By ME

Research

  By: John Gibb in the Otago Daily Times.   In a cruel twist, many Covid-19 survivors could be affected by a once-obscure chronic fatigue condition, initially termed the Tapanui flu, and whose existence was once ridiculed and denied. Emeritus Prof Warren Tate, 73, of the University of Otago biochemistry department, officially retired recently but is continuing […]

Craniocervical Instability, Neurosurgery And M.E.: Just The Facts, Please – An Editorial By Jeff Wood

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  By Jeff Wood in Health Rising.   Jeff Wood’s remarkable recovery from severe ME/CFS following spinal surgery to correct craniocervical instability (CCI) and other problems shocked the ME/CFS community. It’s safe to say that almost no one saw that coming. Since then, others, including Jen Brea and Julie Rehmeyer, have been diagnosed and undergone […]

Dublin Mum Shares Warning Signs Of ME In Children After Daughter’s Diagnosis Aged Just 7

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  By Blathin De Paor in RSVP Live. (Should you wish to contact Paul O’Connell directly about this story, you can find him on Twitter: @PaulEOC). Chronic Fatigue Syndrome, is a condition many consider to be rare, but the reality is, it’s simply massively underdiagnosed. However, experts are seeing a huge spike in the number […]

Stick With It…….

Writing Poetry

    STICK WITH IT….. In life we like to fit right in To mix in with the crowd Not to shout, not stand out Not to be too loud But sometimes things just come along That force us into change I’m talking Chronic Illness Making life so strange When M.E. hits, it hits you […]

‘Lockdown Is Basically What Having M.E/C.F.S Is Like’: An Interview With Sally Callow, Pt 1

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  By Paris Ali-Pilling inThe Star and Crescent.   Paris Ali-Pilling talks to Sally Callow in a two part series. In part one, Sally explains about the impact of the pandemic on her social enterprise. Sally is the founder of Stripy Lightbulb CIC and ME Foggy Dog, which offer training and aim to raise awareness about M.E/C.F.S. Interview transcribed by […]

Leeds Disabled Activist Campaigning Against Proposed Changes To Chronic Pain Treatment

Chronic Pain

  By Mark Lavery in the Yorkshire Evening Post.   A disabled activist  from Leeds who suffers from a  chronic pain condition is campaigning against major changes to the way patients like them are treated. Saba Mir, 28, of Woodhouse – who is non-binary – has suffered from ME for two years and is in severe and […]

Makayla And Her Av1

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  From noisolation. Due to her ME, Makayla is not able to attend school full time. She was forced to give up her favourite sports and hobbies, which included dancing and swimming. Makayla has tried to combat the social isolation and loneliness she feels through interfaces such as Instagram, where she can make friends who […]

Celtic Great Davie Provan On Struggling To Cope When ME Ended His Career At 29

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  By Aidan Smith in the Scotsman. Some good things have come out of Covid. Bluer skies, clearer waters, families round the dinner table, a deeper appreciation of the NHS and also schoolteachers. Doubtless you’ll be able to think of 
others and today Davie Provan nominates one that’s close to his heart. “There’s a whole lot more […]

The Guilt Of ME

Writing Poetry

  The Guilt of ME When the beast descends we know the score Strength and hope go through the floor We’ve all been on this road before Another day of guilt Want to take my part in life Want to spend some time with wife Want to cause no further strife Another day of guilt […]

York Disability Rights Forum

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From The Yorkshire Times.   As an active campaigner for the York ME Community I’m pleased to be involved with the newly launched York Disability Rights Forum. The work to raise awareness of ME is challenging and over the years the Community has had many successes, including getting support for achieving our aims from local […]

Leaving Frailty Behind – A Conversation With Laura Hillenbrand

Laura Hillenbrand

  From Stanford Medicine.   She is an author of extraordinary success. Laura Hillenbrand’s Seabiscuit and Unbroken are literary phenomenons: Together, there are more than 13 million copies in print, and both have been made into blockbuster motion pictures. Seabiscuit, published in 2001, tells the story of a racehorse that captured America’s heart during the Great Depression. Unbroken, published in 2010, […]

Bedbound Midlands Singer Releases Debut Album – And Is Forward Of Taylor Swift In Chart

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  By  Ryan Holmes in Matza Review. A singer who has ME has launched her debut album, after spending two years recording it whereas bedbound, with it presently quantity two within the Amazon Best Sellers chart forward of Taylor Swift. Kara Jane Spencer, 29, from Shirebrook, Derbs., was recognized with the debilitating situation when she was simply […]

My Diary And ME

Writing Poetry

My Diary And ME Busy days, life’s ablaze Diary’s full to the brim So much that I want to do But can’t fit everything in Hectic sport and social life Days out with daughter and wife Coaching football, archery session Being taught a badminton lesson Then an entry when not feeling good Turned down invitation, […]

We’re 20 Percent Of America, And We’re Still Invisible

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  By Judith Heumann and John Wodatch in the New York Times. Ms. Heumann is a disability rights activist. Mr. Wodatch is a civil rights lawyer.   This month as the 30th anniversary of the Americans With Disabilities Act approached, we asked two prominent figures in the disability rights movement, Judy Heumann and John Wodatch, where they thought […]

Covid And Chronic Fatigue: We Must Learn From ME Patients’ Suffering

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  By Danni Watts, Journalist. Content warning: Contains an image of an ME patient, at her request, which readers may find distressing. There are growing numbers of Covid-19 patients reporting ongoing symptoms, for some lasting months after the initial infection. The cluster of post-viral symptoms commonly includes extreme fatigue, brain fog and widespread pain. For ME patients this […]

An Open Letter To The COVID-19 Long Hauler Community From A Person With ME/CFS

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  By Cort Johnson in Health Rising. “If you look anecdotally, there is no question that there are a considerable number of individuals who have a post-viral syndrome that in many respects incapacitates them for weeks and weeks following so-called recovery. They report symptoms such as brain fog, difficulty concentrating and fatigue that resemble the […]

Trial By Error: Joan McParland’s Lightning Process Experience

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  by David Tuller, DrPH Aura-reader and Tarot expert Phil Parker, also known as the founder of the Lightning Process, has posted a video on YouTube of an “ME/CFS success story.” Without knowing anything about Amy’s situation or medical history beyond what she shares, I have no reason to disbelieve her testimony of recovery from […]

A Picture Of ME

Writing Poetry

  A Picture Of ME In my mind there is a picture That fades some more each day It shows how my life used to be Before M.E. came to stay A picture full of colour Of fun, of laughs, of life Not of where I am today Of worries, pain, of strife My picture […]

Feeling Alone With ME/CFS, Fibromyalgia Or POTS ? Why Finding A Connection Matters – A Tribute To A Leader Of The Community

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  By Michael Cuthbert in ProHealth.   It was about 4 years into severe illness, when pain had become more than just an issue during flare ups – it had become a daily occurrence. What was causing all these symptoms? Just when I had found a way to adjust to a new normal, a new […]

The Fear In My Doctor’s Eyes

Anil

  By Anil van der Zee in CAPTURE.DANCE.WORDS.   The honeymoon. Before becoming ill, my relationship with the medical world was always great. It was pretty much straightforward really. During my profession as a dancer, injuries were of course always of a concern. I had to be in close contact with doctors, physiotherapists, massage therapists, […]

Emily, My Inspiration

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    From the  ‘A Life Hidden’ Blog.   Seven years ago today, my first article in The Daily Telegraph was published. It told of the suffering and death of my dear friend Emily Collingridge. Emily had been passionate about raising awareness of ME, and I couldn’t bear the thought of her death passing unnoticed by the […]

Caution And Controversy

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  By Anna Redshaw in her M.E. Myself And I Blog.   This post has been years in the making. And even after sitting on it for so long and coming back to it to triple check I’m expressing myself as carefully and as clearly as I can, it still feels controversial to click Publish. […]

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