ME Blogs

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 […]

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) […]

Trial By Error: My Latest Letter To Bristol’s Legal Department

David-Tuller-906x1024

    By David Tuller, DrPH Today I sent the following e-mail to Sue Paterson, director of legal services at Bristol University. I cc-d several other people on the e-mail. ********** Dear Ms Paterson— Earlier this month, I sent you an e-mail to ask, among other questions, when Bristol University plans to finish its investigation […]

ME Affects Four Times More Women Than Men – Dismissing This Terrifying Illness Is Sexist

ME !

    By Josie Richardson in Huffpost.   Like Victorian women being branded ‘hysterical’, women like my best friend are being silenced.   “ME, that’s the one where you don’t feel like going to work today,” Ricky Gervais once quipped on-stage. He voices a common feeling. I have heard someone casually proclaim that they must have […]

About Ian Rudd

18d15f10-537d-4cb4-b983-a770cb6e1ca7_1522775067859

  From All About M.E.   My cousin Ian Rudd died in April 2018. Paramedics were called in the early morning and were unable to resuscitate him. This is an edited version of a blog I wrote for severe ME Day in 2015 while Ian was still alive. He suffered from a cruel disease called […]

CDC The Puppeteer And The UK BPS Connection To Bury ME

paper chain figures holding hands in a row waiting to get a medical check up the nurse stands waiting look at their health

By Gabby Klein in Relating to ME.   Fake Media Attacks on #PwME In the past week, there has been a media onslaught of biased and stinging articles maligning 17 million disabled men, women and children worldwide who suffer from the acquired neurological and immunological disease myalgic encephalomyelitis (ME).  The false media stories about the […]

Beauty In The Dark

Anil

  From Anil van der Zee in Capture. Dance. Words.   For years I’d dreamed of backpacking through Europe, of seeing the Eiffel Tower and the Mona Lisa and the Roman Colosseum. This summer at the age of 28 I finally got to achieve that. But in the shadow of the monuments, many of the […]

SEID Is Killing ME

ME-Advocacy-Logo-5

  From ME Advocacy.   Advocating in the United States for the disease myalgic encephalomyelitis (ME) has reached a new challenge that threatens the very core of the recognition for the disease. While some advocacy organizations have diverged and taken the alarming path of partnering with the US Health and Human Services (HHS) in adopting, […]

Pacing Is A Simple Concept. So Why Do I Find It So Hard ?

Pacing

      By Jo Moss in A Journey Through The Fog.   Living with a chronic illness like ME/CFS creates many challenges. Along with the multitude of symptoms, we also have to learn to adapt to the restrictions placed on our lives and to manage our limited energy levels. The term “pacing” crops up […]

The Power Of Listening

Doctor

      By Naomi Whittingham in A Life Hidden.   In September 2016, I contributed to a training course for junior doctors at my local hospital.  The following was used as part of a seminar entitled “Patients and doctors as partners in learning”.  I used the term ME/CFS for this piece, as this is how ME is […]

Dealing With Anger Now That I Have Chronic Fatigue Syndrome

Jamison

  By Jamison Hill in The Mighty.   I love to break things. Yeah, I know, who doesn’t? But I get such a satisfying feeling when I break something. Maybe not a bone, or a really expensive gadget, but breaking something cheap and discardable is satisfying to me. Very satisfying! In 2011, after I was sick for […]

Who Reviews ME/CFS Applications For NIH ?

Funding

    by Jennie Spotila in Occupy M.E. There is no question that NIH’s funding of ME/CFS research has been minuscule relative to the size of the public health crisis. Review of ME/CFS grant applications at NIH has drawn scrutiny from the public as one contributing factor. The public perception is that the grant review panelists have not been […]

Trial By Error: A Bit More About Bristol’s Investigation

David Tuller

    By David Tuller, DrPH Yesterday I reported that Bristol University, at the request of the UK Health Research Authority, is investigating a number of studiesconducted by Professor Esther Crawley. The results of this investigation are expected in two months or so. Today I can disclose that the scrutiny involves papers linked to a specific research […]

Going Back in Time…

golden-spiral

    From Spoonseeker.com Blog.   When the ‘Guidelines for Commissioners of Services with Medically Unexplained Symptoms‘ document was first published a year or so ago, there were those in the Science for ME forum who were sceptical about whether the project was viable. Prof Jonathan Edwards commented: “I actually think this guidance will fall completely […]

18 Things I Learned In 2018

Pippa

    From the Life Of Pippa blog.   Although I’m not a particularly superstitious person, there’s always been something about the number 18 in my family. It’s when all the birthdays and anniversaries and life events seem to fall, it’s the addresses we live at, and it always seems to be an intrinsically lucky […]

Dear Bug… I Don’t Survive at Being An Adrenaline Junkie

Jessica

  By Jessica Taylor-Bearman.   Dear Bug… I Don’t Survive at Being an Adrenaline Junkie It’s interesting when you learn things about yourself that have probably always been there but I’d not even noticed. This week I’ve been in London, well for four days – a mini week! I really wanted to attend The Author School and […]

Trial By Error: Yet Another Letter About The Lightning Process Study

David Tuller

  By David Tuller, DrPH.   This morning I sent the following letter to Fiona Godlee, editor-in-chief of The BMJ and editorial director of BMJ. I cc-d Carol Monaghan MP, Darren Jones MP, and Nicky Morgan MP. ********** Dear Dr. Godlee— More than a dozen years ago, a group of leading medical journals agreed that […]

Exposing The Deception: SEID Is Not ME!

ME

  By Gabby Klein in Relating to ME.   My thanks to advocate Eileen Holderman for her consultation on this blog post The US government health agencies and some organizations who purport to represent people with ME (pwME) are deceiving this community by purposefully conflating names and criteria for myalgic encephalomyelitis (ME), and the government constructs […]

A Statement In Support Of Cochrane

220px-Cochrane_logo_stacked.svg

  From the Virology Blog. Cochrane has decided to temporarily withdraw a review of exercise therapies for the illness variously known as ME, CFS, ME/CFS and CFS/ME. The review reported that exercise therapy is effective in treating the illness—a finding that has provided unwarranted support for recommendations that patients should undergo the intervention known as […]

The Never-Ending Challenge Of Dealing With Post-Exertional Malaise (PEM)

Tired

  From the Not Just Tired blog.   After a good day, or a spell of feeling pretty ok, it’s always a kick in the teeth when Post-Exertional Malaise (PEM) catches up with you. As I’m sure those of you living with ME/CFS, will be all too familiar with. For those not familiar, PEM is […]

School, University And Work With ME/CFS

sick and tired

From notjusttired.com.   This is the second interview of my new blog feature – “Interviews with people living with ME/CFS.” The idea is to interview people living with ME/CFS, and gain an insight into their lives, to help raise awareness and increase understanding of this disease. You can read more about it here. Here is my interview with […]

If The Government Won’t Take ME Seriously Who Will ?

Nervous System

  By Lesley Scott in Third Force News.   What happens to patients’ rights when there is no accountability in the system? Myalgic encephalomyelitis (ME) is categorised by the World Health Organisation under diseases of the nervous system. The Scottish Government supports this categorisation and it underpins the current Scottish good practice statement on ME. […]

Post Twenty Seven. No, I’m Not Tired.

ME Drained

  From puffins&penguins&me.   The ME Association was recently asked by the media to compile a piece describing the difference between having ME and just feeling tired all the time. Given the frustratingly common misconception that ME is ‘feeling tired’, this of course resulted in a lively discussion on their Facebook page, and it prompted me to […]

Netflix and Hill: The True Story Behind “Afflicted”

Jamison

  By Jamison Hill in Jamison Writes.   On August 10th Netflix released Afflicted, a seven-episode series in which I appear with six other chronically ill patients. Though I had high hopes for the series, and some parts were accurate, it has ultimately caused damage to the chronic illness community, portraying many of the participants as […]

An Open Letter To M.E.

Ev

  From The Cornerstone For Thoughts !  By Ev.   Dear Myalgic Encephalomyelitis, Do you remember when you decided that I’d be one of your 250,000 victims? You probably don’t but I can remember the early days of my symptoms. It began in late 2015/ early 2016, I think, annoyingly however I put you down […]

Karina Hansen 8 (Updated): The Aftermath Continues

Valerie Eliot-Smith

  By Valerie Eliot-Smith.   GOOD NEWS: I originally published this post in June 2018. I am re-publishing it today (10 August) as there has been an encouraging development since then. Thank you to Bente Stenfalk (see below) for the updated information. Original post follows the update. UPDATE August 2018 On 9 July 2018, psychiatrist Dr Charlotte Emborg […]

When Gaining Weight Because Of Chronic Illness Is A Common Story

Chronic

  By Lorna Fenech in The Mighty.   Even before I was diagnosed with myalgic encephalomyelitis (ME), I always found it hard to love myself and my body. Low self-esteem and body dysmorphia contributed to a generally negative perception of myself, particularly my weight. Over the years I tried to manage this by staying healthy. I have […]

When I Thought I Lost Me To ME

Lisa

  By Lisa M Alioto in The Mighty.   For years now, I’ve dreamed of being healthy again. I know I may never be, but I will continue to dream for it.  I also know that for years that I no longer felt like myself. I felt lost in the pain, the disease, the uncertainty of it […]

The Questions I Ask When People Refuse To Believe ME Exists

Lost

  By Jo Moss in The Mighty.   I have been in my local paper twice recently raising awareness about myalgic encephalomyelitis (ME). Both times, spiteful comments have been left by members of the public stating: “ME doesn’t exist.” “It’s all in their heads.” “You are just lazy.” It’s a stigma we, the ME community, […]

Going Anti-Viral

Jamison

  From the Jameson Writes Blog.   I’ve spent the last several weeks in a really dark place — literally a dark room with covers on the inside and outside of the windows. If you regularly read this blog then you may be wondering how that is different from the way my life has consistently […]

Having ME Is Like Being Permanently Encased In A Suit Of Armour

ME2

  By Johnathan Davis in HUFFPOST.   I have, for a long time, struggled to fully get across the impact this illness has on my life.   I have been asked many times what it is like to have myalgic encephalomyelitis (ME) and I have, for a long time, struggled to fully get across the […]

Dear Bug… I Want to Live So Very Much Yet My Body Isn’t Letting Me

Jessica

  By Jessica Taylor-Bearman.   In the past few weeks, I have been dealing with the frustrations of wanting to be able to do more than my body would let me. In fact, that is not strictly true… the M.E. Monster lets me have a taste of what is out there, then whips it away from […]

What I Miss About My Life Before ME/CFS

MECFS

  By Jo Moss in A Journey Through The Fog.   I am getting a pair of shoes ready to send to this year’s Millions Missing event. I have been asked to attach a tag with the following information; My name, how long I have been ill and what I’m missing. The ‘What I’m missing’ […]

Powerchairs Aren’t Just For Elderly People

Pippa

From The Life of Pippa Blog.   If you’re new to my blog, hello and a warm welcome! I’m Pippa, I’m 23, and I have a rather inconvenient chronic illness: you can find out more about me here. I’ve used a transit wheelchair for the last three years as my mobility has decreased, and I recently […]

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