ME Blogs

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

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  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 […]

My Secret Life – M.E/CFS Kids And Motherhood

Secret

  By Sarah Wells in My Stripey Life.   Having two lives, one of which you do not want other’s to know about. The life that everyone believes is your “true” life is one of complacency and subtlety, one in which the person is generally unassuming. However, in the second, “secret” life, the true essence […]

The M.E. Adventures Comic: Energy And Exertion #MEawareness

Laura Chamberlain

  By Laura Chamberlain in Laura’s Pen Blog.   Laura’s Pen presents a comic for ME Awareness that demonstrates the difference between energy and exertion in a healthy person and someone with Myalgic Encephalomyelitis… Today is ME awareness day, and to make a change I thought I’d make a comic. When I decided to do this […]

How Many Times Must a Story Be Told…?

DessertSpoons

  From Spoonsekkerdotcom.   Sorry I’ve not been blogging recently. I put the blog to one side to concentrate on another project but I didn’t realise how long it would take. Needing to take breaks every five minutes to replenish my brain when I’m writing doesn’t make for speedy progress. Today, however, it has been […]

The Prevention Of ME/CFS ?

ship

  From the ‘A Ship Of My Own Making’ blog.   ME/CFS can’t be prevented, we all know that. But do we? Certainly it isn’t something that medical professionals talk about, or ME/CFS advocacy and patient support groups, and equally certainly there is no proven method of prevention. I, personally, don’t believe that that means […]

The Reality Of Fatigue

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  By Sarah Wells in My Stripey Life.   Fatigue. Chronic debilitating fatigue. Now I don’t mean being tired, tiredness and fatigue are very different things. We all get tired, our lives are busy, we put far too much pressure on ourselves to perform at school or at work.  To be the best mum, dad, […]

My Secret Life – M.E/CFS Kids And Motherhood

ME2

  By Sarah Wells in My Stripey Life.   Having two lives, one of which you do not want other’s to know about. The life that everyone believes is your “true” life is one of complacency and subtlety, one in which the person is generally unassuming. However, in the second, “secret” life, the true essence […]

Trial By Error: Our Exchange Of Views With BMJ Open

David Tuller

  By David Tuller, DrPH   Last week, Professor Racaniello e-mailed a letter of concern signed by more than a dozen experts to Dr. Trish Groves, editor-in-chief of BMJ Open. The letter involved Professor Esther Crawley’s school absence study, which the journal published in 2011. As I’d documented in a post last year, the study exempted itself from ethical […]

How Medical Guidelines Become Suffering

ME2

  By Melanie Schickedanz in Huffingtonpost.de.   At the end of January, DEGAM (German Society for General Medicine and Family Medicine ) published the newly revised guideline “Tiredness” , although it is still “in progress” on the homepage of the AWMF (as of 15.02.2018). DEGAM is a German non-profit professional association that represents the professional and scientific interests of general medicine in Germany. The disease […]

In My Chronic Illness, I Found A Deeper Meaning

Frustration Chronic Illness

  By Elliot Kukla in The New York Times.   I became disabled overnight in a car accident. The car accident was a dream, but the disability was real. I dreamed I was driving through the ravaged streets of Oakland, Calif., at the end of the world. I turned the corner and careened inescapably into a […]

How It Feels To Be A Fitness Instructor Who Can’t Exercise Due To ME/CFS

Gym

  From Emma’s Not Just Tired Blog.   Please note this is based on my own personal views and experience and is for information purposes only. It should not be taken as medical advice. It’s January again, and that time of year when everyone is talking about exercise. You can’t switch on the TV without an advert for […]

David Tuller And The (S)PACE Cake Eaters

David Tuller

    By Anil van der Zee.   In 2015 David Tuller, DrPH, a Senior Fellow in Public Health in Journalism at the Center of Global Public Health, School of Public Health at Berkeley University started writing 3 very detailed blogs about the flaws of the now infamous PACE-trial. The patient community has been advocating for years, if […]

Post Twenty One. The Wheelchair Has Arrived.

Wheelchair

  From puffins&penguins&me A personal blog about my experience of living with the illness Myalgic Encephalomyelitis (ME)   So, the much anticipated wheelchair has arrived! It was delivered mid-November by a very nice engineer who unpacked and put it together for me, and he gave me some basic instructions, how to use the joystick, how to […]

A Woman Who Dared, With ME

Rivka-Solomon

  by Rivka Solomon It was late afternoon, and I could barely get my body out of bed. In fact, I had been in bed most of the last few days––or was it weeks? Even with all that rest, my legs were still too weak to stand up. It wasn’t that I lacked the desire to […]

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