ME World Perspective

Leaving Frailty Behind. A Conversation With Laura Hillenbrand

Laura Hillenbrand

  By Paul Costello in Stanford Medicine.   She is an author of extraordinary success. Laura Hillenbrand’s Seabiscuit and Unbroken are literary phenomenons: Together, there are more than 13 million copies in print, and both have been made into blockbuster motion pictures. Seabiscuit, published in 2001, tells the story of a racehorse that captured America’s heart during the Great Depression. Unbroken, […]

Is The Brain Causing The Small Fiber Neuropathy In Fibromyalgia (And ME/CFS ?)

Cort_Johnson

    By Cort Johnson in Health Rising.   It seemed ever so clear. The reduction in the number of small nerves in the skin and eyes of roughly forty percent or so of the people with fibromyalgia (FM) and chronic fatigue syndrome (ME/CFS) must bring the body – as opposed to the brain – into […]

Trial By Error: An Ill-Informed Article In The Guardian

David Tuller

      By David Tuller, DrPH People who know little or nothing about the illness or cluster of illnesses variously called myalgic encephalomyelitis, chronic fatigue syndrome, CFS/ME, and ME/CFS can’t seem to stop writing stupid and ill-informed stories about it. And Professor Michael Sharpe seems to blame “Americans”–rather than his own disastrous research–for his […]

Anna spends 22 hours a day in bed. But experts hope they’re close to a cure

alexander-technique-and-cfs-me

      By Melissa Cunningham in The Sydney Morning Herald.   Anna Kerr often spends up to 22 hours a day in a darkened room unable to get out of bed. Following her first pregnancy, the Thornbury mother-of-two felt something was amiss. At first, it was a newfound reaction to wine and coffee, triggering nausea, weakness […]

Words From A Hidden World

Blog

    By Naomi Whittingham.   Welcome  to my blog.  The main purpose of this site is to bring together my existing work, but I also hope to add new writing from time to time.  I have never blogged before and am looking forward to the freedom of writing as I wish, with full editorial control.  (The downside is […]

New Hub Of ME/CFS Research Opens At Harvard Plus The “Hidden Gem” And New Insights

Scientist using a microscope

    By Cort Johnson in Health Rising.   Times are changing. The Stanford area with its bevy of researchers and doctors (Ron Davis, Robert Phair, Mark Davis, David Kaufman, Bela Chedda, Jose Montoya, Rahim Esfandyapour, Michael Zeineh, Fereshteh Jahanbani and others) seemed like “it” for ME/CFS. But look at Boston now! A new hub […]

Because Of ME, I Can Only Imagine Being The Mum That Others Get To Be

childcare

      By Sophie Cooklynne in The Mighty.   Downstairs, my two-year-old son, Lucas, is playing. He’s a beautiful, clever and sweet little boy who lights up my entire world. Upstairs, I lie in a single bed, trapped in the shell of a body; bedridden permanently and suffering dozens of symptoms that mean that […]

Netflix Sued For Defamation By ‘Afflicted’ Subjects Who Say Docuseries Painted Them As “Crazy Hypochondriacs”

Netflix

    By Erik Pedersen in Deadline.   The 50-page complaint (read it here) was filed Wednesday in Los Angeles Superior Court by defendants including Jamison Hill, Pilar Olave, Jill Edelstein and Bekah Dinnerstein. Referred to in the suit as “the Afflicted Four,” they claim they were “duped by Plaintiffs into participating in a salacious reality […]

Phoebe & Georgina’s Sponsored Kayak !

1

    By Georgina & Phoebe in Let’s Do It for Myalgic Encephalomyelitis.   Even a live Second World War grenade  couldn’t stop us! On Sunday the 28th of July we began our quest to conquer a 25 mile kayak to raise money for Invest In ME Research. This journey consisted of a very early start, […]

Aid Without Asking: How To Support Someone With ME

MEAction_WebLogo-50_

  By Jonny Foster in #MEAction.   The love of my life battles ME/CFS. It’s a disease that my father has also struggled with since I was a boy, so it’s one I know well. I knew life wasn’t going to be simple when we met, but I dove in head-first anyway. I can’t say […]

Tracking Peripheral Immune Cell Infiltration Of The Brain In ME

brain-power

    Principal Investigator Prof. Jarred Younger Institution University of Alabama, Birmingham, Alabama, USA Start date June 2018 Background and aim Many of the characteristic symptoms of ME/CFS suggest that the immune system is activated in the brains of people with the illness, leading to the release of inflammatory chemicals. This neuroinflammation is known to […]

#MEAction Responds To Attacks On ME Community In The Guardian And Psychology Today

MEAction_WebLogo-50_

  By #MEAction.   In the past two weeks, The Guardian UK and Psychology Today US have published articles portraying the myalgic encephalomyelitis (ME) community as an angry, misguided mob using social media to denigrate scientific research. Both articles focus on the criticism that Dr. Michael Sharpe, one of the key authors of the PACE trial and […]

My Invisible Illness Just Became Visible And Here’s Why

Lisa

    By Lisa Alioto in Realistic Optimism.   I have an invisible illness, meaning you cannot see it, but it’s oh, so present for me every minute of my life. I’m constantly exhausted, in pain, have a variety of cognitive deficits, vision loss, light, sound, and temperature sensitivities, a weakened immune system, and many, many […]

Glimpsing The World: My Joy And Pain

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

    By Naomi Whittingham in A Life Hidden.   There is an indescribable joy in experiencing the outside world after many months or years of incarceration.  The dance of sunlight through the leaves of trees; the flicker of shadows on grass; the touch of a gentle breeze.  When darkness and isolation have been the foundation of […]

Post Thirty Four. Planning For A Future With Severe ME.

Caminage

  By Pheobe Boag in Puffins, Penguins and Me.   It’s been a good few months since my last post, and you’ll soon find out why, I’ve had a lot going on. With so much happening, my limited brain function has had to be directed elsewhere, and my poor wee blog has been neglected as […]

Straight Talk From Carol Head As She Steps Down From Solve ME

Carol Head

  By Cort Johnson in Health Rising.   ME/CFS Rears Its Head Again A commitment to social justice runs in Carol Head’s blood. She founded a non-profit which has given away millions to support entrepreneurs who work on global poverty, and was a founding board member of another non-profit that tells the stories of marginalized women’s lives. Her work […]

RACGP’s 2015 Guidelines On Graded Exercise Therapy Published In A UK Medical Journal

Graded-exercise-therapy-300x192

  By Laura Beere in Emerge Australia.   Apologies for all the acronyms and brackets in the post below. We’ve tried to make this as clear as possible so that we can keep you informed about a (sadly this time – negative) development that could impact on the treatment and welfare of people with ME/CFS. […]

The Emerge Australia Media And Research Digest (028) 26th July 2019

Australia

  Welcome to the Twenty-Eighth Emerge Australia Media and Research Digest! The fortnightly summary of research and media about Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) If you’d like the Digest to drop directly into your inbox every fortnight you can sign up for the Digest here. (This will ONLY sign you up for the Digest – this […]

Emerging Insights #1: McGregor’s Grand Conception Of ME/CFS

Australia

  By Cort Johnson in Health Rising.   This is the first in a series of blogs that report on the recent EMERGE conference in Australia. The different conference format – which allowed for long presentations – allowed the presenters to dig more deeply into their topics than usual. Longtime Australian metabolomics researcher Neil McGregor […]

What I Hear When You Tell Me ‘But You Look Fine’

Frustration Chronic Illness

  By Melanie Leong  in The Mighty.   Fairly recently, I had this weird experience where a person with a chronic illness threw the “but you look fine!” line on me. I am pretty certain I didn’t respond. In fact, I don’t really recall what happened afterwards because I was in shock. Isn’t it chronic illness code that we […]

Please Stop Trying To ‘Fix’ My ME/CFS

Mighty

  By Simone DM in The Mighty.   When you become ill, all you want is for others to be compassionate and understanding. Yet when you come down with something like ME (myalgic encephalomyelitis), that not even your doctor comprehends, it’s a different story. Others are quick to pass judgement, believing you are somehow causing your […]

Chronic Fatigue Syndrome (ME/CFS) Article Rocks Top Medical Journal

Anthony_Komaroff

    By Cort Johnson in Health Rising.   It took Tony Komaroff over thirty years to get this done but it may have been worth it. Komaroff, Harvard doctor, researcher and ME/CFS advocate, has been studying, writing about and advocating for ME/CFS research since at least 1987 when he was the senior author on […]

ME/CFS Research: The First Quarter Of 2019 In Review

Scientist using a microscope

  By Rochelle Joslyn (PhD) Edited by Allison Ramiller, in Solve ME/CFS Initiative.   2019 is off to a strong start for ME/CFS research! From the search for sensitive and specific biomarkers in neuroimaging and CPET testing, to the use of next generation (RNA) sequencing in transcriptomic analyses of peripheral blood, findings from the first […]

The Epstein-Barr Virus – Could It Be Causing Neuroinflammation In ME/CFS ?

Simmaron

    By Cort Johnson in Simmaron Research.   BV has been a virus of interest since almost day one in chronic fatigue syndrome (ME/CFS). In fact, at one point, EBV was such a hot topic that ME/CFS was called for a time “chronic Epstein-Barr virus” disease. While studies have generally failed to find evidence […]

Funding For ME Research…… Or Lack Of

Soap Box

  Yesterday I read a report that there’s been a big breakthrough in curing male pattern baldness in America. Research in 2016 showed that the US was putting six times the funding into baldness research than that put into research into Myalgic Encephalomyelitis  (ME). Absolutely astonishing that vanity should come before an illness that kills […]

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

Me Australia

      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 […]

Trial By Error: An Update About The Pediatric MUS Systematic Review

David Tuller

    By David Tuller, DrPH This week I raised concerns about a second systematic review that cited the dung heap known as the Lightning Process study, published by Archives of Disease in Childhood two years ago. This new review did not mention the paper’s egregious deficiencies. After the appearance in April of an earlier systematic review that highlighted […]

How My Life Has Changed Since I Developed ME/CFS

Life Changing Event

  By Lisa Alioto in The Mighty.   When I was me… I always greeted you with a smile. I may have tried to say something funny to put a smile on your face and I was always excited about whatever plans we had for the day. When I was me… I worked out. Sweaty, […]

The ME/CFS And Fibromyalgia “What Would You Have Done Differently” Survey

What-I-Would-Do-Differently-If-I-Started-Again

By Cort Johnson in Health Rising. when you get it right you pass it on… Gary Snyder   When things go wrong, the “If only I had known! “, “If only I could have that back!” mantra shows up in spades. Of course, we all make mistakes – major mistakes – that we wish we could […]

Out Of Africa – Breaking the Mold And Making A Difference

johnson_cort

  By Cort Johnson in Health Rising.   The news of Dr. Montoya’s termination from his Stanford medical practice and center hit the ME/CFS community hard. The possible loss of even one practice is alarming, even to people who would never have the opportunity to visit that practice. Maybe now is a good time to […]

Stanford Researchers Looking For ME/CFS Patients With CCI

Research Study

  By Jennifer Brea in Medium.com.   The Stanford Chronic Fatigue Syndrome Research Center would love the participation of patients with diagnoses of both Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Craniocervical Instability (CCI) in an ongoing ME/CFS research study. They are looking for patients who: Have been diagnosed with ME/CFS Have been diagnosed with craniocervical […]

ME Association May Summary of ME/CFS Published Research – 19 June 2019

Research

  By Charlotte Stephens, Research Correspondent, ME Association. The Index of Published ME/CFS Research has now been updated to take account of the research that has been published during the month of May 2019. It’s a little later than normal due to ME-related absence. The Index is a useful way to locate and then read all relevant research […]

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 […]

Disney Made Me Question My Disability

Life of Pippa

  From the Life Of Pippa Blog.   This piece was originally written for Scope’s online community, but I never got around to sharing it on my blog. It was this time last year that we were in Disneyland Paris living our very best lives, so here’s something of a throwback… Something I often consider is […]

The York ME Community © 2015
Powered by Live Score & Live Score App