Blogs

Trial By Error: Another Letter to NICE’s Sir Andrew Dillon

David Tuller

  By David Tuller.   First, for those who might have missed it, here’s a conversation from This Week in Virology (TWiV), posted a few days ago. Dr. Racaniello and I discuss the CDC, NICE, Esther Crawley’s ethically challenged behavior, the CMRC, and other stuff. Second, earlier today, I sent the following e-mail to Sir Andrew Dillon, […]

Can Positivity Cure Any Disease ?

Anil

    By Anil van der Zee, in his Capture, Dance, Words Blog.   As long as I have been suffering from my illness I’ve read and have also had some people tell me that the cause and course of my disease rests in some way in my own hands. I have always found that remark […]

Humans of ME/CFS

ME Drained

  By Laura O, in Solve ME/CFS Initiative.   I stared feeling run down and not quite myself nearly four years ago. I had all these strange things happen to my body. I just couldn’t get my head around it. The symptoms I had/have scared me and at times I actually thought, “I’m dying.” Who gets this […]

My Life As ‘Little Miss Brain Fog’

Brain Fog

    By Jane Shaw in The Mighty.   Like its name, myalgic encephalomyelitis is also rather complicated and extraordinary. The illness made Little Miss Brain Fog feel like Little Miss Dotty, Little Miss Scatterbrain, Little Miss Fickle, Little Miss Whoops, Mr. Bump, Mr. Topsy Turvey, Mr. Forgetful, Mr. Lazy, Mr. Muddle, Mr. Dizzy, Mr. […]

The Psychological Impact Of Having To Ask For Help

Help

    By Debbie Deboo in The Mighty.   I was diagnosed with ME 15 years ago. Before that I was a confident professional in charge of my own life and completely autonomous. When I got ill I found myself in the difficult position of having to rely on others. I could no longer go anywhere […]

Bottom Of The Ramp

Research Funding

  From The Occupy ME Blog.   In aggregate, 2017 turned out to be the biggest year of ME/CFS funding at NIH ever. But when I scratched the surface, I found bad news buried within the superficially good news. We are still at the bottom of the funding ramp that Dr. Collins promised us, and […]

The Little Known Nutrient That’s Growing My Daughter New Mitochondria | PQQ

2-mitochondria

    By Rebecca Ferguson in the Recovering Kids Blog.   Mitochondria. We all have them. We all need them. We need them especially in order to digest some of the biology textbook reminiscent explanations of what they do! But we’ve got even the most mito-challenged, fatigued among you covered with a two-minute, easy-to-follow video that explains […]

Meet The York Internet Sensation Whose Viral Videos Have Clocked Up 600 Million Views

Amber

  From YorkMix.   She’s an internet sensation whose videos go viral, who can see a single Instagram post shared 700,000 times, and who has interviewed everyone from Al Gore to Will Arnett. And she’s from York! Amber Doig-Thorne is an online superstar. Her Facebook videos have clocked up more than 600 million views since […]

What Should I Do When Someone Tells Me to Exercise ?

Exercise

  By Sleepy girl in her ‘How To Get On’ Blog.   Many people with ME and Chronic Fatigue Syndrome are told by their doctors that exercise will help them. This is often called “Graded Exercise Therapy,” though some doctors doctors will simply recommend “exercise”. Some people are also advised to exercise by their loved […]

PIP: The Truth Is Out

benefits

  By Mik Scarlet in HUFFPOST.   On April 2013 the government introduced the Personal Independence Payment, a new so called “disability benefit” which would replace Disability Living Allowance. DLA itself was introduced in 1992, when the existing Mobility Allowance, which helped disabled people with the financial cost of getting around, and Attendance Allowance, designed to […]

How Chronic Illness Can Drastically Affect Your Self-Esteem

Chronic

    By Megan Klenke in The Mighty.   I think one of the most difficult parts of being chronically ill has been the effect it’s had on my self-esteem. That probably sounds very strange, given that chronic illness comes with a whole slew of physical, mental and emotional challenges that might seem to take precedence over something that […]

Graded Exercise Therapy Causes Harm In ME/CFS. Everyone Knows That, Right ?

GET

    From The Self Taught Author Blog by Clark Ellis.   What is patently obvious to the majority of ME/CFS sufferers is not at all obvious to most others. It is not obvious to NHS staff. It not obvious to academics and politicians. It is not obvious to the public. There are many reports […]

10 Famous Individuals Who Have Suffered From Chronic Fatigue Syndrome

Carly Cassella

    By Carly Cassella in Medium.com.   1. Florence Nightingale Florence Nightingale is the celebrated patron saint for those who suffer from Chronic Fatigue Syndrome (CFS). Nightingale is celebrated for her role as a nurse for wounded British soldiers during the Crimean War. Few realise, however, that from 1857 she was disabled by poor health, which […]

My Bike And M.E – Am I A Cheat, A Fraud Or Reckless ?!

Sarah

  By SarahatSaje.   I don’t think I’m unusual in wanting to celebrate the good things in life. I don’t think I’m unusual in preferring to showcase the things I can do on social media rather than what I can’t. Tuesday 29th August 2017 was a perfect example. It was our silver wedding anniversary. We celebrated with a […]

Home Sweet Home

Blog

  From the ‘This Thing They Call Recovery’ Blog by Jenny. Sickness is scary, end of. It’s something that you carry with you, you can’t just leave it at home and forget that it’s there. If I’m being honest, my own body scares me a bit. I don’t feel safe in my own skin. Your […]

Transitioning From An Abled Life

Lonely-man

  By Christina Baltais in #MEAction.   When a sudden and unexpected illness catapulted my life into a completely different path, life as I had come to know it, was irrevocably changed. Prior to this, I thrived on the fast paced career trajectory that our Western ableist society promotes, rewards, and idolizes. I was by […]

The Benefits Of Rest In ME/CFS: Swapping Afternoon Naps For Regular Rests

Resting

      From Laura’s Pen Blog By Laura Chamberlain.   I am a member of several ME support groups on Facebook and it has shocked me on several occasions to see people ask “My doctor/ME clinic have told me not to nap, but I can’t get through the day with out it. How do you […]

ME/CFS In Young People: A Primer

Russell Logan

    By Russell Logan in Shout Out About ME.   Leading international me/cfs experts have written a primer for diagnosing and managing the illness in children and adolescents. The new primer lifts the veil on a poorly-recognized disease ravaging our most vulnerable, leaving some children wheelchair dependent, housebound, or bedbound and many more unable […]

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 […]

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 […]

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, […]

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