ME Blogs

Living With ME/CFS Is Hell, And Many COVID Longhaulers Are Experiencing It

ME Symptoms

  By Elaine Roth in Scary Mommy blog.   It’s been more than a year since the very first case of COVID-19 was contracted in Hubei province in China. Since those very early days, the virus has gone on to infect more than 57 million people worldwide, with more than 11 million of those cases happening in the […]

The Enduring Light Of Love

Lost

From A Life Hidden Blog by Naomi Whittingham.   I see him in the hushed beauty of a winter sky; in the gold-streaked clouds of an expectant dawn.  I feel his presence in music and candlelight.  He is never fully here, yet with me always.  Unknown to much of the world, yet a constant in my […]

Trial By Error: NICE Draft Guidance On ME/CFS Coming Next Month

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By David Tuller, DrPH *October is crowdfunding month at Berkeley. I conduct this project as a senior fellow in public health and journalism and the university’s Center for Global Public Health. If you would like to support the project, here’s the place: https://crowdfund.berkeley.edu/project/22602 The pandemic has played havoc with everything, including the timeline of the development […]

Trial By Error: That Royal Society Of Medicine Webinar On Long-Covid

David Tuller

  By David Tuller, DrPH Proponents of cognitive behavior therapy and graded exercise therapy as treatments for CFS, ME, or their variants keep trotting out their favored interventions for patients suffering from persistent fatigue and other symptoms after acute Covid-19. Last week, the Royal Society of Medicine conducted an online webinar called “Long COVID: Understanding the shadow […]

Balancing Hope And Acceptance With A Chronic Illness

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  By Caroline Elizabeth in the Frozen Amber Blog.   Finding acceptance while holding on to hope with a chronic illness is like walking a tightrope, especially as the years grind on. Hope is a vital life force that propels us, whereas acceptance allows us to discover new ways of living within the moment. Clearly […]

A Reminder To You

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  By Anna Redshaw in M.E. Myself and I.   No amount of willpower or positive thinking will rectify the faulty ATP production within your body. No amount of wishful thinking will suddenly see your likely-mitochondria-failure reversed. Please don’t let flippant remarks by others, or by articles written by those outside this community, about how […]

Meet The Scientist: Professor Chris Ponting – DecodeME

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By Dylan Murphy, Guest Blogger, ME Association. Professor Chris Ponting is Chair of Medical Bioinformatics at Edinburgh University and a Principal Investigator at the MRC Human Genetics Unit, Institute of Genetics and Molecular Medicine. His research group has made substantial contributions to protein science, evolutionary biology, genetics, and genomics. He has served on the editorial boards of […]

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, […]

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. […]

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, […]

Welcome To Law And Health

Valerie Eliot-Smith

  By Valerie Eliot Smith in Law And Health.   “The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.” ~ Valerie Eliot Smith 2019  ***************************** Note: this blog works across all devices but can be viewed most easily on a computer or tablet. Thank you for visiting […]

Trial By Error: Today Is May 12th And Everyone’s Missing

David Tuller

  By David Tuller, DrPH Today, May 12th, is International Awareness Day for Chronic Immunological and Neurological Diseases (CIND)—often shortened to International ME (or ME/CFS) and Fibromyalgia Awareness Day. Besides ME, other diseases included in the CIND group, per the May 12th International Awareness Day site, are chronic fatigue syndrome, Gulf War Syndrome and multiple chemical sensitivity. […]

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 […]

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 […]

Life In Lockdown: What Matters When All Is Lost

Lost

  By Naomi Whittingham in A Life Hidden.   On the eve of 2020, in New Year Reflections, I looked back on a difficult 2019 and asked: “What might I be called upon to face this year?”  I could not have imagined what lay ahead – not only for me, but for the entire world. Living […]

The Distant Corona Connection

Anil

  By Anil van der Zee.   Adjusting. We are in a crisis! A pandemic! The coronavirus is spreading. It’s frightening. Will I be infected? My friends? And most importantly how will it affect us? The uncertainty of the unknown is probably the most unsettling of the whole situation. As we are dealing with a […]

A Letter To My Nearest And Dearest

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  From the Mummying and M.E. Blog.   To my wonderful friends and family (you know who you are), I want to attempt to say thank you to you all but also sorry at the same time by writing this open letter. I’m not entirely sure I’ll manage but here goes. For those who haven’t […]

M.E Myths Debunked: Part 1

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  By Lorna McFindlow in the Cream Crakered Blog.   Two years ago, when I was diagnosed with M.E, I knew a little about it because a friend of mine had it, but other than that I was clueless. From what I was told at the time of my diagnosis, I understood that I was […]

Marcie Zinn Was A Force For ME

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    From Meaction. We are deeply saddened by the sudden death of Marcie Zinn, PhD, who was a dedicated researcher, advocate and person with myalgic encephalomyelitis (ME). Marcie died of sudden heart failure on Dec. 28, 2019. Marcie and her husband, Mark, founded the Neurocognitive Research Institute (NCRI), a non-profit that specializes in 3D-mapping of the […]

Scope Accused Of ‘Exploitation’ After Seeking Disabled Writer To Work For Free

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    By John Pring in Disability News Service.   A disability charity has been accused of “exploitative” and “disgraceful” behaviour after asking disabled journalists to write an article for its website without payment. The charity Scope sent out a message on social media this week seeking a “disability blogger” who could write an article […]

30 Years Beyond Comprehension

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  From A Life Hidden.   Today is the 30th anniversary of the day I became ill.  How surreal those words sound, even after three decades spent adjusting to them.  My illness now accounts for three quarters of my life: a span of time so vast that it defies comprehension. When I fell ill as […]

Stop Assuming I’m Not Disabled Just Because I Don’t “Look Disabled”

Disability Parking

  By Rachel Carrington in Rooted in Rights.   I park my car in a parking space reserved for those with disabilities. My door is barely open before I’m confronted by a woman who demands to see my handicap parking placard. Her mother is disabled, and she needs the space. I point her toward my […]

When The Triggers For Your Illness Are Constantly Changing

Lisa

    By Lisa Alioto in The Mighty.   For the past six years I have lived with myalgic encephalomyelitis (ME). It’s a multi-system disease that affects the neurological, endocrine, immune and energy metabolism systems. Its hallmark symptom is post-exertional malaise (PEM). PEM is a reduction in functioning and a severe worsening of symptoms after even minimal exertion. […]

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