Blogs

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

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    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

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  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 […]

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 […]

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 […]

My PIP Diary Part Four – The Stacked Deck

Mik Scarlet

  By Mik Scarlet in The Huffington Post.   I called the first entry in my PIP diary The Saga Begins. I had no idea how prophetic that would be. What I expected to be a fairly straight forward enterprise has turned into a nightmare. Surely as someone with a fairly static impairment that will never […]

What To Do When Doctors Don’t Give A Crap !

Doctor

  From The Little Lifestyle Blog.   Now doctors have very hard and demanding jobs dealing with life and death situations all the time, so I highly respect them and what they do but while being ill with Fibromyalgia, Chronic fatigue and Depression I had some bad experiences with them! They weren’t all bad I had […]

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 […]

Trial by Error: NICE Rejects My FOI Request

David Tuller

  By David Tuller, DrPH in Virology Blog.   The National Institute for Health and Care Excellence, the U.K. organization that develops clinical guidelines for medical conditions, has rejected my freedom-of-information request for the names of the experts involved in the reassessment of the guidance for the illness it calls CFS/ME. This isn’t surprising, since […]

Neuro(logist) – M.E. Militant

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    By Anil van der Zee.   The other day Dr. Jim Faas, insurance physician, lawyer, former President of the Association of Insurance Physicians (NVVG) and Senior Staff Officer at the Dutch unemployment office (UWV bezwaar en beroep), wrote a blog in the biggest Dutch medical news website Medisch Contact about the current situation […]

Why You Should Always ‘Like’ Your Own Facebook Posts

Facebook

    From the Rick’s Daily Tips blog.   If you’ve been using Facebook for a while you’ve probably noticed that many people “Like” their own posts just as soon as they post them. While this could be viewed as a form of vanity (I mean really, is it cool to “Like” your own posts?), […]

Staying Alive By Smartphone 

Smart Phones

  From jamesonwrites.com.   This essay was originally published in the Los Angeles Times in April. I wrote and edited the piece entirely on my smartphone.  It has become commonplace to the point of cliché for pundits to explain in worried tones that smartphones can be addictive. In a recent “60 Minutes” segment, Anderson Cooper interviewed […]

Smile Trial (part 2) – The Lightning Process

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    From The Johnthejack Blog. A trial so flawed as to be worthless. The second of three blogs on the SMILE trial. The first is here.   The SMILE trial was ‘a pilot randomized trial with children (aged 12 to 18 years) comparing specialist medical care with specialist medical care plus the Lightning Process‘. A report was published […]

Living With ME – Emelyne’s Transcript

Living with ME

  From the #SpeakforME Blog.   My name is Emelyne and I #SpeakforME because so many people suffer in the dark behind closed doors. ME has no bias, it affects men, women, children, adults, young and old. It can change during your life, it can get really tough. It can get better and there can […]

When Self-Doubt Makes You Question Your Own Illness

Laura Chamberlain

      By Laura Chamberlain from her Blog, Laura’s Pen.   How self-doubt nearly stopped me finding an important diagnosis… I have found myself having a very similar conversation with multiple people recently, about self-doubt about your own illness when you’re chronically ill. I’d never previously spoken about it, because, I guess, I don’t […]

What’s The Harm ? How I Turned To Wellness Out Of Desperation To Cure My Chronic Illness

Natasha Lipman

    By Natasha Lipman.   This week, I headed up to Leeds to speak at the British Dietetic Association’s Eat Fact Not Fiction event, where I had the pleasure of telling my story of falling for wellness, and why it’s so important that we don’t just dismiss people as stupid for falling for these trends. I’ve […]

10 Mic-Drop Replies For Every Time Someone Doubts Your Illness

Mike Drop

  by Elaine Atwell in Healthline.   If you’ve ever had to explain your medical condition to a stranger, you’ve probably experienced the wide-eyed pity, the awkward silence, and the “Oh yeah, my cousin has that” comment. But the most frustrating experience of all may be when you patiently explain your condition to someone, and […]

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