Personal Stories

The Fear In My Doctor’s Eyes

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  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. […]

From The Tahoe Outbreak To COVID-19 Dr. Peterson And Simmaron Take On The Coronavirus – And ME/CFS

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  By Cort Johnson in Simmaron Research.   “Testing is so important to everyone in our community, especially front-line workers and people who are at higher risk of severe disease. Simmaron is excited to serve our neighbors and lead the way to broader testing, so we help keep Nevada safe and learn more about this […]

A Letter To ME

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    A Letter To ME I want to write a letter To me of years ago To tell me of what’s coming up To tell me what’s in store If this was really possible Where then would I start How do I say, what’s coming my way How do I break my heart Do […]

Disabled People Forced To Fight For Right To Live Ordinary Lives, MPs Hear

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By John Pring in Disability News Service.   Disabled people are being forced to fight for their right to live ordinary lives because of the flawed and under-resourced social care system, MPs have been told by a disabled campaigner. Anna Severwright told members of the Commons health and social care committee on Tuesday that she and […]

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 illness. […]

Airport Faces Legal Action Over Wheelchair-User Twice Left ‘Distressed And Humiliated’

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By John Pring in Disability News Service.   A wheelchair-user has launched a legal action against Manchester Airport after he was twice left feeling “distressed and humiliated” by how he was treated on journeys to and from a family holiday. Quamer Khaliq, from Ashton-under-Lyne, had to threaten to call the fire brigade after he was […]

Unseen: Black People Living With ME

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  By Wilhelmina Jenkins in #MEAction.  When I became ill in 1983 with what is now called ME/CFS, my life as I knew it was abruptly destroyed. I dropped into a world of pain, exhaustion, and dozens of other baffling symptoms, most particularly the cognitive disruption that robbed me of the life in physics that […]

Fatigue And ME

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Fatigue And ME I have a worry on my mind That spins my head around It causes grief, it’s beyond belief And an answer must be found It’s about a word that’s used a lot A word filled with intrigue Not beat, not weary, not tired or wired But that bleedin’ word fatigue ! It’s […]

It’s Not You, It’s M.E.

Writing Poetry

As we approach the end of ME Awareness Month….. It’s Not You, It’s M.E. When we first started out Wide eyed at the coming years We were so strong We just bowled along No worries, no cares, no fears. Now times have changed We’re growing apart Body and soul It’s breaking my heart It’s such […]

My Comments To The Cochrane Review On Exercise Therapy For CFS

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By ME/CFS skeptic.   Problems with the amended version (Version published: 02 October 2019) part I. I appreciate the efforts made by Cochrane and the authors to correct some of the errors in the previous version of this review. There are however some major problems that remain and significantly impact the results and conclusion. I hope […]

Bus Company Forced To Act After Campaigner’s Wheelchair Space Victory

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  By John Pring in Disability News Service.   A disabled campaigner has secured an “important victory” that has forced a transport company to bring in new measures to protect the rights of wheelchair-users to use buses. Wheelchair-user Nina Grant, from north London, began legal action against Arriva after repeatedly being left on the pavement […]

Paul Garner: Covid-19 And Fatigue—A Game Of Snakes And Ladders

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  By Paul Garner in BMJ BMJ Blogs.   It’s over, I thought! It was the beginning of May, after the weirdest seven weeks of illness I had ever had, a roller coaster of exhaustion, pain everywhere, tinnitus, headaches, and fog: I felt remarkably well, almost high. The aches had gone, my mind was alive, […]

ME Awareness: Failure To Accurately Diagnose Can Lead To Lifetime Of Misery And Suffering

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  By Debbie Mckno in the ME Awareness website. My name is Debbie. Here is the story of my long, exhausting, and difficult battle to get diagnosed with Fibromyalgia and Myalgic Encephalomyelitis. From 17 years old, I was told by doctors, “You are just run down.” I had constant infections, viruses, and chronic tonsillitis. Feeling […]

Why Certain Illnesses Remain Mysterious

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  By Sarah Ramsay in The Paris Review.   When I first began research for my book about women with mysterious illnesses, I was overwhelmed. No two women were alike. The number of illnesses that qualified as mysterious was staggering. Lyme, post-treatment Lyme disease syndrome, candida, Epstein-Barr, Ehlers-Danlos, polycystic ovary syndrome, subclinical hypothyroid, dysautonomia, irritable […]

Living Life ‘Light’ With ME

Writing Poetry

  LIVING LIFE ‘LIGHT’ WITH ME When ME strikes We know the score Our lives won’t be As they were before We learn to pace Wind things down Cut things out Try not to drown Living on the edge of fun As if your life is all but done In the shadows, out of sight […]

Beyond Tired : ME/CFS Life – Awareness Week 2020

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From the Invisibly ME Blog.   The 11th to 17th May 2020 marks ME/CFS Awareness Week. It was also Fibromyalgia Awareness Day on 12th May, which I posted about recently with debunking 6 fibro myths. The colour blue is recognised as the colour of ME awareness and many charities, groups and individuals are doing their bit […]

Sadly, COVID-19 Could Just Be The Start Of Your Problems..

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  By Spoonseeker.   I know you have enough to worry about already with the pandemic situation the way it is, but there is something else important that you should know. The sad truth is that if you get COVID – 19 and survive, it could just be the start of your problems. Ever since […]

‘Leave No One Behind’ – ME Awareness Day 2020

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  There has been a sense of confusion in my heart since the Covid-19 Lockdown. Maybe by writing I can unravel the unease. Thoughts on ME & Covid-19 by Corina Duyn. For the past seven weeks – 55 days – life as we knew it has changed forever. A virus which nobody can see, but […]

ME And The Pain Of Looking Forward

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By talmandan in The Low Side Blog.   I’ve spent the last six weeks with some strange form of writer’s block. I don’t know if it has just coincidentally been parallel to a global pandemic, or due to some debilitating levels of ME related exhaustion, or a combination of both. I’ve watched while chronic illness bloggers […]

COVID-19, NICE And ME: Towards Litigation ?

Valerie Eliot-Smith

  By Valerie Eliot Smith   On 18 March 2020, I tweeted this: “#coronavirus is ongoing international emergency. #MyalgicEncephalomyelitis has been international crisis/scandal for decades. In US #ME continues to be marginalised by @CDCgov  & @NIH. Nevertheless #ME advocacy must continue as #ME patients everywhere remain vulnerable + invisible.”    Since that tweet, the COVID-19 crisis has continued to escalate worldwide. Given that the disease myalgic encephalomyelitis (ME) often has an […]

What Have Tea And Cake Got To Do With M.E. ?

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    By Anna Redshaw in her M.E. Myself and I Blog.   In my experience it can be difficult to get non-sufferers to properly engage with M.E. advocacy efforts. There can be many reasons for this. Perhaps they find it upsetting to think of the depths of their loved one’s suffering. Or they don’t […]

Stalwart Champion Of The ME Community Retires After Distinguished Parliamentary Career

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By Dr Charles Shepherd, Hon. Medical Adviser, ME Association.   ME advocate and parliamentary champion, the Countess of Mar, retires from The House of Lords after 45 years. Earlier in the week the Countess of Mar wrote to members of Forward-ME to say that she would be retiring from the House of Lords as from today. […]

The Bank Of ME

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  THE BANK OF ME In life you live within your means You save to manage all your dreams Paying back any debts you owe Trying to keep your spending low Then life hits us with ME It sets our fogged minds racing How to cope, our only hope To save our strength through pacing […]

Endometriosis & ME

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  By Vivien Steeles in M.E. Support.   My Experience I’m in contact with many people with M.E., both by e-mail and letter, and it is such a lonely disease with many people not being diagnosed properly or given any help even today. I had to give up my job of teaching and lecturing in […]

Dear Diary: How Will We Remember The Year The World Paused ?

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By Katie Strick in MSN MSN Lifestyle.   Calories consumed: 2,250 (mostly rosé). Minutes spent queueing for the supermarket: 28. Kilometres run in hour of state-mandated exercise: 5.3 (so I could tell Instagram I’d donated to the NHS). Zoom calls completed: seven (if we include the school-mates quiz on Houseparty). It’s funny, trying to summarise […]

“A Little Slice Of Normality In A Very Crazy World” – How Off-Road Dog Walking Is Providing Solace In Lockdown

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    From TGA Mobility.   On a morning, one thing is as cyclical as the sunrise – cocker spaniels Tyler and Maya will be roaming the outdoors on their daily walk, followed by Lisa Vesty on her trusty TGA Vita S. Lisa isn’t alone of course. Indeed when the lockdown started, the other dog walkers […]

10 Things People Don’t Realize You’re Doing Because You Have An Invisible Illness

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  By Kim Quindlen in Thought Catalog.    Often, the hardest part of having an invisible illness is not the chronic pain or the constant discomfort or any of the other symptoms – it’s the fact that other people cannot really see or understand what you’re going through. Although the disability causes endless problems and challenges for […]

Mourning The End Of An Era, And #NotEnough4ME

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  From dSavannah Rambles blog.   Five years ago yesterday was the last day of my last job, the end of my professional life, and the start of my life as a disabled person (although I didn’t know at the time that it was the end, and it took me a long time to call myself […]

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