Personal Stories

“Doctors Can Commit Scientific Fraud And Financial Fraud And Not Be Punished”

  By David F Marks. Press Release by Dr Myhill concerning Dr Myhill’s Virtual Hearing 22 MARCH 2021 – vs ICO & GMC Doctors can commit scientific fraud and financial fraud and not be punished. This is the conclusion of Dr Sarah Myhill following her recent hearing vs the ICO and GMC. Dr Sarah Myhill tells […]

Let’s Drop ‘Chronic Fatigue Syndrome’

  By Ev Francis in West England Bylines. viral and I felt like Piers Morgan – difference being I wasn’t spouting tedious commentary on Prince Harry again. Someone pass him someone new to pick on. It came following the BBC Coronavirus special that discussed Long Covid and the parallels I’ve alluded to for the last 12 […]

Trial By Error: Jennie Spotila Tracks Down–and Busts–an Old Tale About “Death Threats” from Patients

  By David Tuller, DrPH In early 2011, the first report of the PACE results in The Lancet drew widespread criticism from patients and advocates. Later that year, stories about unhinged, anti-science patients harassing and threatening leading researchers in the field appeared in high-profile UK outlets like BMJ and The Times. In the UK, this appears to […]

Apparently Just By Talking About It, I’m Super-Spreading Long Covid

By George Monbiot in The Guardian.   Rejoice! A mystery has been solved. We now have an explanation for long Covid, a condition afflicting many thousands of people. A super-spreader has been identified. Important as this finding is, I’m reluctant to call for the vector to be eradicated. Why? Because it’s me. In a presentation to the reinsurance giant […]

How To Hide Your Disabled People: A Lesson From City Of York Council

By Elki in York Disability Rights Forum. Elki lives in York and relies on using her Blue Badge to be able to park near enough to the places she needs and wants to go. In this Member’s Voice post, Elki writes about what she sees as the dangers of reducing disability visibility in York. Disability […]

Renowned Scientist’s Son Describes His Chronic Fatigue Syndrome: ‘A World Of Pain, Loss And Agony’

  By Johnny Dodd in People. Whitney Dafoe spent most of his 20s visiting doctors and undergoing tests to find an explanation for why he felt so weak and exhausted. “I was open to all possibilities,” recalls the one-time globetrotting, aspiring photographer, who often spent months at a time backpacking through remote locations around the […]

Our Response To That Controversial Study On CBT Outcomes In Chronic Fatigue Has Now Been Formally Published

  By Brian Hughes in The Science Bit.   As you read here in February, David Tuller and I attempted to respond to an alarming research paper that appeared in a recent issue of the Journal of the Royal Society of Medicine. The paper they had published had purported to show evidence that cognitive behavioural therapy leads to symptom improvements […]

Scientist Ron Davis Is Fighting To Cure His Son’s Chronic Fatigue: ‘It’s Like A Living Death’

  By Johnny Dodd in People.   Stanford geneticist Ron Davis faces his toughest challenge yet: tackling the chronic fatigue syndrome that has left his 37-year-old son bedridden. Thirty minutes into a Zoom interview about their years-long battle to keep their son Whitney Dafoe alive, Janet Dafoe shoots her husband Ron Davis an anxious glance. Whitney, 37, suffers from a severe case of […]

ME & Long Covid – When Will Our Exhausted Cries Be Heard ?

  By Revd Joe Haward in Byline Times. Reverend Joe Haward shares his experiences of having ME and explores the challenges patients face in getting the reality of their lives with the disease heard by professionals and those in positions of power. On Friday 8 February 2019, I was rushed into hospital with a suspected […]

I Just Walked For The First Time In Five Years

By Jamison Hill.   Tears are gushing out of my eyes, down my cheeks, dampening my shirt. These tears are a mix of joy and sadness. Joy for having just walked for the first time in half a decade. Sadness for having had to live through those five years. I’ve been sick since 2010, but […]

The Never-Ending Challenge Of Dealing With Post-Exertional Malaise (PEM)

From the NotcJust Tired Blog.   After a good day, or a spell of feeling pretty ok, it’s always a kick in the teeth when Post-Exertional Malaise (PEM) catches up with you. As I’m sure those of you living with ME/CFS, will be all too familiar with. For those not familiar, PEM is the worsening […]

Why Terms Like ‘Fully Accessible’ Don’t Help Disabled People

  By Carrie-Ann Lightly. Visiting a new place can be anxiety-inducing for even the most confident disabled person. A holiday, a weekend trip, a day out – even popping to the local shops. Why would you be worried about nipping out for a loaf of bread, I hear you ask? Because, dear reader, the language […]

Scientist With Son Who Suffers From Chronic Fatigue Syndrome Hopes Research Can Help COVID-19 Patients

  By Austin Williams in Fox 26.   The National Institutes of Health identifies “COVID long haulers” as a “large numbers of patients who have been infected with SARS-CoV-2 continue to experience a constellation of symptoms long past the time that they’ve recovered from the initial stages of COVID-19 illness.” The chronic fatigue syndrome Ron Davis’ son suffers […]

Fog And M.E.

Fog And M.E. In a car when fog descends Lights go on to see the bends Other dangers illuminated A flick of a switch, clarity created An M.E. fog is not the same It wraps around our words, our brain There is no switch, no helpful light Just confusion, loneliness and fright An M.E. symptom […]

The Best Thing I’ve Ever Done: Filmmaker With ME Wants To Raise Awareness Of Hidden Illness

By Emily Coady-Stemp in SW Londoner.   A Herne Hill filmmaker hopes his short film This is ME will bring awareness to those living with a common invisible disability. Josh Pickup, 29, was diagnosed with myalgic encephalomyelitis (ME), which is also known as chronic fatigue syndrome, at the age of 21. ME is among the most common […]

All In Your Head

From Undiagnosis. I have been dropping various hints over the last few months about a non-fiction project I have been working on for the last two and a half years. It’s called All In Your Head, and you can find out more about it on the website here. In brief, it’s the story of what happens when […]

Why My Wheelchair Is A Part Of My Body, And What This Means For You

  By Ginny Butcher in Conscious Being. When I was young I would say that my relationship with my wheelchair was akin to that of a turtle and her shell. I stand by this analogy. To me, my wheelchair is most literally a part of my body. It enables me, supports me, and if you […]

A Surgeon’s ME Story

By Michael Gallagher.   I am an orthopedic surgeon and former marathoner and triathlete living with chronic fatigue syndrome (ME/CFS). Below is an an email that I sent to my colleagues describing my battle with ME/CFS that has robbed me of my ability to do much of what I love. I think many people can […]

Burnout Is Real

    By Jamison Hill in Jamison Writes.   I’m going to keep this post short because, to be honest, I’m burnt out and a few hundred words is all I can muster at this point. For the last several years, I’ve been devoting pretty much all of my free time to getting my book […]

I Was Reported To DWP And It Broke Me

  By Kate Stanforth in WheelAir. Kate Stanforth shares her story, from being an active young girl, to developing a chronic illness and navigating ESA, DWP and public opinion. I’m going to open this by saying that this is the most honest blog I have ever written. It’s on a subject that I know lots […]

Explaining Paul Garner’s Long COVID Recovery Story (???) Plus What Does It Mean ?

  By Cort Johnson in Health Rising. Paul Garner’s recovery story from long COVID has met with almost universal dismay and anger from the chronic fatigue syndrome (ME/CFS) community. Garner, after all, was something of a champion for long COVID and ME/CFS. An infectious diseases specialist who had weathered serious infections before, he seemed perfect […]

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