ME Symptoms

Post Seventeen – The PACE Trial Scandal

Pace-Study-debunkedrev-330x330

    From the Blog, puffins&penguins&me   I have been wanting to write about The PACE Trial for some time, about the background, the controversy and where we are at today. I have tried, but unlike my usual posts it is very technical, involves a lot of research and there’s a lot to cover. I just don’t […]

Using Mobility Aids When You Have An Invisible Illness

Invisible Illness

    “What happened to you, then?” There’s no ideal time to acquire a long-term chronic illness, but becoming disabled halfway through your undergraduate degree has to be up there in the Least Convenient Life Situations list. Adapting to the student experience whilst learning to live with a painful and debilitating neurological condition isn’t a […]

Exercise Tests Suggest Autoimmunity Causes The Exertion Problems In Chronic Fatigue Syndrome, Fibromyalgia And POTS

Cort_Johnson

  By Cort Johnson in Health Rising.   Researchers and doctors get interested in ME/CFS in different ways. Many have a personal connection, but for David Systrom,  a pulmonologist, it was all about demand. He didn’t seek chronic fatigue syndrome patients out – quite the contrary.  When Systrom was given control of a clinical cardiopulmonary […]

M.E. Meant This Blog Took Me Several Months To Write

Feeling sad

    By Isabel Walter in Huffpost.   On holiday in the Peak District in June 2007, three months after being diagnosed with ME, I sat down one afternoon with a pile of postcards and discovered I could no longer write. The words were clear in my head, but the pen in my hand made […]

Why Are Doctors And Patients Still At War Over M.E.? How The Best Treatment For The Debilitating Condition Is One Of The Most Bitterly Contested Areas In Medicine

Choosing-recovery-strategy-for-fibromyalgia-and-mecfs-narrow-1040x520

  By Jerome Burne For The Daily Mail.   Myalgic encephalomyelitis (ME) is a debilitating condition that can leave those affected bedridden for years. It’s linked with as many as 60 symptoms, the most common being a feeling of constant exhaustion — ‘like a dead battery’. The condition first reached mainstream consciousness in the Eighties following […]

How A Relapse Of ME/CFS Caused Me To Develop Anxiety

anxiety-is-my-friend

  By Clare Rudderty in The Mighty.   I’m going to tell you something only my husband, parents, sister and one friend know. Why would I share such a secret with thousands of people? Well, I hope having the courage to do so helps some of you know you’re not alone in your experiences. So, […]

Trial By Error: My E-Mail Exchange With NICE Chief Executive

David Tuller

  By David Tuller, DrPH.   On Friday, I had an e-mail exchange with Sir Andrew Dillon, chief executive of the NICE Guidance Executive. The other seven Guidance Executive members are various directors within the NICE hierarchy, including the communications director. This group will make the final decision about whether to accept the provisional decision of a […]

‘The Most Common Disease You’ve Never Seen’: How One Woman Turned Her Illness Into A Life-Changing Film

Jen Brea TED

    By Alice Vincent in The Telegraph.   Jennifer Brea was 28 when she was bedridden with a high fever. As she explains, “I got better, but something wasn’t right.” She, like millions of people worldwide, had contracted Chronic Fatigue Syndrome, or myalgic encephalomyelitis, otherwise known as ME. Suddenly, her life as she knew […]

Stanford: Scientist Searches For Answer To His Son’s Devastating Condition

Whitnet Dafoe

  By Lisa M. Kreiger in The Mercury News.   As a renowned Stanford scientist, Ron Davis has a deep appreciation for the power of modern medicine. And yet an explanation for the disease afflicting his own beloved son eludes him. Son Whitney, 33, suffers from such severe Chronic Fatigue Syndrome that he is bedridden, unable to […]

Chronic Fatigue Syndrome – A Roadmap For Testing And Treatment

Road map vector with street pathway route pin icon on the way tr

  Introduction Chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME) and usually abbreviated to ME/CFS, is a neurological condition characterized by cognitive dysfunction, mood disorders, fatigue, post-exertional malaise, and an array of other symptoms. The following guidelines will help you determine: (1) whether you have chronic fatigue syndrome, and if so: (2) which laboratory […]

The Loneliness Of Having An Illness Science Doesn’t Understand

Julie

  By Lily Carollo in Science of Us.   If someone told you she had something called chronic fatigue syndrome, you might not take her very seriously. Who among us isn’t tired all the time? And yet chronic fatigue is a condition with a name that belies the very serious malady it’s meant to convey. While exhaustion is indeed […]

NICE Refuse To Take Down Harmful Treatments 25,000 Children Harmed ?

NICE logo

  By Tina Rodwell.   I had my reply from NICE. For some reason David Hahalam did not want to talk to me. Well I am not important, am I? After all I am just one of the 25,000 parents that would like ME taken seriously to protect the children from harm. A good solid […]

A Plea From A Fallen Doctor On Chronic Fatigue Syndrome (ME/CFS)

Doctor

  From Reddit.   I was educated at Baylor and practiced medicine for 30 years. I had a thriving practice, a rich social life, and excellent physical and mental health. I loved what I did and loved my life. I ran marathons, spoke at conferences, and chaired non-profits. I am now completely bedridden from post […]

Metabolic Switch May Bring On Chronic Fatigue Syndrome

metabolic-rate-slim4fun

  By Andy Coghlan in New Scientist. It’s as if a switch has been flicked. Evidence is mounting that chronic fatigue syndrome (CFS) is caused by the body swapping to less efficient ways of generating energy. Also known as ME or myalgic encephalomyelitis, CFS affects some 250,000 people in the UK. The main symptom is persistent […]

Severe ME Day 2017; Sophia Mirza, Inflammation Of The Brain And Spinal Cord And The Role Of The Gut

Sophia Mirza

  From Let’s Do It for Myalgic Encephalomyelitis.   Severe ME day is an initiative of the 25% ME group for the severely affected. It is held annually on 8th August to commemorate Sophia Mirza’s birthday and it’s purpose is to remember and raise awareness of those deceased and severely affected by ME. Sophia Mirza (1973 – 2005) died in […]

8 August: Understanding And Remembrance Day For Severe Myalgic Encephalomyelitis

ME Drained

    By Jody Smith in Phoenix Rising.   August 8th, is Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis, an important day in the ME community. It’s a day that is intended to bring attention to those whose voices are the most quiet, whose presence is so easily overlooked. Their footprint leaves next to no mark. […]

This Is Why I Quit Exercise Therapy

Walking

  By Camilla Maxted in BuzzFeed.   It took 11 medical appointments across 20 weeks of pain and despair before I finally got a diagnosis. For months, I’d been suffering from exhaustion so extreme that bit by bit, I’d had to let my whole life drop away. For a long time I tried to ignore it – after all, […]

Body Count: The Tragic Stories Of Severe ME – Commemorating Severe ME Day On August 8

Severe ME

  By Russell Logan in SHOUTABOUTME.   “…the opposite of life is not death, it’s indifference” — Elie Wiesel They’re known as the ‘invisible’ ones, the severe Myalgic Encephalomyelitis (ME) patients that governments, doctors, researchers and communities refuse to acknowledge. The US CDC even renamed the illness Chronic Fatigue Syndrome (CFS) after a single symptom ‘fatigue’ to deliberately […]

Getting Back On Your Feet After An Illness

Blue and white 3D illustration with the word blog repeated  in different shades

    From The Little Lifestyle Blog By Keira.   I’ve recently started talking  about my experience with M.E (chronic fatigue syndrome) and we have barely scratched the surface of that topic but right now I’d like to talk about how I went from bed ridden to where I am now, I’m not saying I […]

The European ME/CFS Biomarker Landscape Project: An Initiative Of The European Network EUROMENE

Scientist using a microscope

  From The Journal of Translational Medicine.   Authors and Contributors as listed in article. Abstract Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a common and severe disease with a considerable social and economic impact. So far, the etiology is not known, and neither a diagnostic marker nor licensed treatments are available yet. The EUROMENE […]

The York ME Community © 2015