ME Research And Researchers

ME Research Summary

Research

  From ME Action.   Myalgic encephalomyelitis is a complex chronic disease that affects multiple body systems. While funding for research and clinical care remains a serious concern, there is now a growing body of literature that identifies and explicates dysfunction in the immune, neurological, and energy metabolism systems in people with ME. What follows […]

Trial by Error: A Letter To Bristol about My Recent FOI Request; Update Added

David Tuller

    By David Tuller, DrPH   UPDATE: Within an hour or two of writing to Bristol, I received a response from the university’s director of legal services. Here’s what she wrote: Dear Dr Tuller Thank you for your email. The Information Rights team is making good progress on clearing the back log, your FOI […]

Spinal Stenosis, Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia: The Spinal Series #3

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  By Cort Johnson in Health Rising.   The Spinal Series This is part three of a series examining spinal issues which may mimic chronic fatigue syndrome (ME/CFS) and fibromyalgia. The first two in the series involved two very ill ME/CFS patients who have recovered or are recovering following surgery to correct craniocervical instability. Could […]

As I Age With ME

ME

  By Marianne Granger in #MEAction. In my forties I was moving forward fulfilling my drive to be a community organiser/communicator/coach (my day job) and also a screenwriter (a remnant of my earlier training and work as a stage actor). Being there for my grown children and reveling in the bliss of holding my grandchildren […]

A Mother’s Story: Alem Matthees

Me Australia

  by Helen Donovan in ME Australia.   May 12 is Alem Matthee’s birthday. Around the world, people with ME, their friends, families and scientists are grateful for Alem’s work in getting trial data released, showing that graded exercise therapy and cognitive behavioural therapy did not improve health the way the study’s authors claimed. In […]

Rare Gene Mutations May Be Affecting Energy Levels In ME/CFS

Genetics

  By Cort Johnson in Health Rising.   Dr. Camille Birch has a PhD in biomedical engineering and hails from the Hudson Alpha Institute for Biotechnology at Huntsville, Alabama. Hudson Alpha, only 11 years old, is one of those new biotechnology efforts that’s using sophisticated bioinformatics to understand how our genes affect our health. Dr. […]

Parents And Children Missing From Their Lives Due To M.E.

Children

  From ME Action.   Myalgic encephalomyelitis (ME) is a debilitating, chronic disease that steals so much from the person. Parents with ME are missing precious days and years with their children due to the disease, and parents of children with ME are fighting to provide care for their sick children in a world where there […]

Do You Have ICC-ME And Other FAQs

Jen Unrest

  By Jennifer Brea.   I just wanted to respond to a few comments and questions raised in response to recent posts in this series. If you aren’t a part of the ME community, be forewarned, much of the following will be hard to follow! The first set of questions all circle the same core question: do […]

Living With Chronic Fatigue Syndrome

KT King

  By Janet Harrison in The Yorkshire Post.   Living with ME can be severely life-limiting for those affected. KT King, 46, from Hessle, explains what it is like living with myalgic encephalomyelitis, sometimes known as Chronic Fatigue Syndrome. “I first became aware of ME aged 23 when I spent six months in bed after […]

New Test Could Revolutionise Diagnosis Of Chronic Fatigue

Australia

  From 9News.   Aimee De Lurant’s battle with chronic fatigue syndrome often leaves her bed ridden, unable to concentrate or even move. The 25-year-old can’t work and has a limited social life as a result of the condition, which at its worst causes symptoms including excruciating pain and extreme exhaustion. “I can’t get out […]

Spinal Stenosis, Chronic Fatigue Syndrome (ME/CFS) And Fibromyalgia: The Spinal Series #3

Cort_Johnson

  By Cort Johnson in Health Rising.   The Spinal Series This is part three of a series examining spinal issues which may mimic chronic fatigue syndrome (ME/CFS) and fibromyalgia. The first two in the series involved two very ill ME/CFS patients who have recovered or are recovering following surgery to correct craniocervical instability. Leader in the […]

21 People Describe What Sensory Overload Feels Like

Sensory

  By Melissa McGlensey in The Mighty.   Sensory overload happens when too much sensory stimulus is occurring at once — it can be triggered by a crowded room, a TV turned up too loud, strong aromas, fluorescent lighting — or a hundred other things. It’s often associated with certain diagnoses like autism, sensory processing disorder, chronic fatigue syndrome, fibromyalgia, post-traumatic […]

Myalgic Encephalomyelitis (ME/Chronic Fatigue Dyndrome), Does It Have A Biomechanical Component ?

cerebro-neurovascular

  By Kjetil Larsen in Trening Og Rehab.   Myalgic encephalomyelitis (ME) is one of medicine’s grand mysteries. Its etiology is not known, and patients afflicted are rarely documented to recover from their ailment. Its diffuse presentation includes many symptoms, which implies that ME is actually an «umbrella diagnosis» for several underlying problems. One of the problems […]

Concerns About Craniocervical Instability Surgery In ME/CFS

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By Michiel Tak in Science For ME.   CCI/AAI has little in common with ME/CFS Three ME/CFS patients, Jeff, Jennifer, and Matt, have reported spectacular improvements of their ME/CFS symptoms following surgical interventions for craniocervical instability (CCI) and atlantoaxial instability (AAI). CCI refers to increased mobility and instability of the craniocervical junction, the transition between […]

Thank You + More To Come

Jennifer Brea

    By Jennifer Brea.   On Monday, I shared that after three neurosurgeries, my ME is in remission. I have to admit , it was scared to “come out” about my improvements. I wasn’t sure what the reaction would be. Skepticism? Grief? Anger? My own feelings about my remission are complex. And I don’t know how […]

This Chronic Syndrome Affects Mainly Women & Is Really Hard To Diagnose

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By Katy Fallon in Refinery 29.   When I was a teenager, my mother fell ill with M.E. and I saw her struggle to get her symptoms recognised – even though she was a doctor herself. Myalgic encephalomyelitis (M.E.) is a chronic condition which affects 250,000 people in the UK and around 17 million people […]

The Intestinal Microbiota In Health And Disease

Microbiome

    From The Microbiology Society.   Humans coexist with more than 100 trillion micro-organisms, including bacteria, fungi, archaea, viruses and protozoa that reside in multiple sites of the body, including the skin, lungs and reproductive tract. Those with the highest density and diversity are found in the gastrointestinal (GI) tract (the intestinal microbiota) and […]

Mattie’s CCI Journey – After 3 Years With ME

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  From Mechanical Basis.   An interview between Jeff and Mattie who has undergone a CCI Fusion operation in the hope of reversing ME.   Mattie is a 47 year old web developer. He lives in a small town in the Netherlands with his wife, his 17 year old son, and their two golden retrievers. Mattie […]

Blood Test May Detect Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Blood Test

    From The National Institutes Of Health.   At a Glance Researchers developed a blood test that, in a pilot study, accurately identified people with myalgic encephalomyelitis/chronic fatigue syndrome. If validated in larger studies, the assay could one day help diagnose the disease and enable researchers to test potential treatments.   Myalgic encephalomyelitis/chronic fatigue […]

Mast Cell Activation Syndrome & Low Blood Volume

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    From Syndrome A.   Summary Two symptoms occur frequently in people with ME/CFS: Mast Cell Activation Syndrome (MCAS) and low blood volume. What if these are not coincidental? Reading time: 4 minutes 27 seconds People with ME/CFS have less blood than we should. We have low blood volume. We also tend to have a condition […]

The International Consensus Criteria For ME

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      From ME Advocacy.   Revised November 14, 2016 to include steps to evaluate for atypical ME as defined by ICC. MEadvocacy.org understands there is a great deal of confusion about the various criteria for myalgic encephalomyelitis, so we created an easy to follow questionnaire to help patients see if they may fit […]

Trial By Error: A Plea To Fiona Godlee On A Familiar Topic

David Tuller

  By David Tuller, DrPH On Wednesday, I sent the following to Dr Fiona Godlee, editorial director of BMJ. The topic, once again, was the ethically and methodologically challenged Lightning Process study, which was published two years ago in Archives of Disease in Childhood, a BMJ journal. My letter was prompted by the recent appearance […]

Severe ME: I Had To Fight The People Supposed To Help Me

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    by Sam* In ME Australia.    Sam (*not her real name) is a teenager living in Australia’s largest city without access to treatment to help her. Sam was prescribed graded exercise therapy (GET) and cognitive behavioural therapy (CBT) repeatedly. After doing GET, Sam became housebound. Sam now has very severe ME and says […]

We Cannot Continue To Let Doctors ‘Gaslight’ Chronic Illness Patients

Gaslighting

    By Siobhan Simper in The Mighty.   Author’s warning: This post contains experiences of gaslighting and abuse. Recently, I saw an all-too-common meme on social media: the inspirational disabled person. The image was of a Paralympic horse rider, with the caption, “no excuses.” Much has been written about the problematic nature of disability “inspiration porn.” What shocked me was when I […]

He Pioneered Technology That Fueled The Human Genome Project. Now His Greatest Challenge Is Curing His Own Son

Ron Davis

    By Ryan Prior CNN.   (CNN)Multiple times a day, every day, Ron Davis sits with his head bowed, waiting outside his son’s bedroom for a subtle signal that it’s all right to come in. He opens the door to the space where Whitney has spent most of the last decade. Whitney lies motionless […]

Adelaide Oval Lights Up In Blue For ME Awareness Week

Adelaide Oval 12 May 2016

    By Jac Creedon in ME Australia.    Since 2015, Adelaide Oval in South Australia has been lit up in blue in recognition of ME Awareness. This year, it will be illuminated on Thursday May 9. It has been organised every year by Jac Creedon, who has had ME for 28 years. Jac lives […]

ME Awareness Day – 12 May 2019

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  On this, our ME Awareness Day,  I would like to thank all those who have used their  limited energies to try and get the message out about the millions of people worldwide who are dealing with ME.   There are too many towns, cities and people to mention, but I can only hope that […]

19 Things People With ME/CFS Wish Others Understood

Lonely

      By Paige Wyant in The Mighty.   Have you ever told someone about your ME/CFS, only for them to respond, “I understand, I’m always tired, too”? Though friends and loved ones may be well-intentioned, it can be frustrating and hurtful when they just don’t “get it.” The reality is that ME/CFS is […]

Understanding ME And Chronic Fatigue Syndrome In Children

Children

  By Claire Tripp in teachwire.   Longterm and little-understood illnesses like ME, or chronic fatigue syndrome, can leave pupils misdiagnosed, isolated and forgotten, so it pays to spot the signs, says Claire Tripp…   You leave work with “Miss! Miss!” still echoing in your ears, an armful of marking, and thinking of Ellie. Once […]

The £4.2 Million Worth PACE Trial – High Hopes, Deep Fall

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    From #FindME.   Do you trust your GP to give you the right diagnosis and treatment you need whenever you feel ill? Yes, most people do! But what if your GP fails to give an accurate diagnosis and worse, prescribes the wrong therapy? This is exactly what happened in the UK based on […]

York To Be Lit Up In Blue For ME Awareness !

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  It has been confirmed by City of York Council that the City Walls and Clifford’s Tower will be lit up in blue for ME Awareness from the 10th to 13th of May. The Council will also be putting out Press Releases to cover the event.

7 Things All Chronically Ill Dancers Can Relate To

Pippa

  From Life Of Pippa.   Since being diagnosed with my long-term condition, I’ve realised that there’s a huge correlation between professional dance and chronic illness. For me, it was ballet. I trained intensively all throughout my childhood and early teens and was lucky to enjoy some ultimate highs and accomplishments, until (in a nutshell) […]

Test Can Spot Whether You Have Chronic Fatigue Syndrome, Stanford And UC Scientists Say

brain-power

  By Cathie Anderson in The Tribune.   Researchers at Stanford University and UC Irvine appear close to giving people with chronic fatigue syndrome something they have wanted for decades: a biological test that diagnoses their disease, according to a research paper published Monday in the Proceedings of the National Academy of Sciences. Those who suffer from […]

‘My Daughter, 21, Who Died Weighing Five-And-A-Half Stone, Had ME On Her Death Certificate – Yet Some Still Say It’s Not Real’

Merryn Crofts

    By Claudia Tanner, in iNews.   The mother of Merryn Crofts believes attitudes about the disease haven’t changed since her daughter’s death two years ago. Clare Norton struggles to talk about the day her “beautiful” and “energetic” daughter took her last breaths just days after her 21st birthday. As a mother, she’d felt helpless […]

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