myalgic encephalomyelitis

Resting When Tired Isn’t Lazy – It’s Self Care

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    By Jo Moss in A Journey Through The Fog.   Since my heart procedure 2 weeks ago, it feels like I’ve done nothing but sleep. I know I should be thankful my poor, exhausted body is finally letting me rest, but I’m struggling with the notion that I’m just “being lazy” and the […]

What “Phantom Nasal Congestion” May Tell Us About ME/CFS And Fibromyalgia

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    By Cort Johnson in Health Rising.   When you have a systemic disease, any part of your body can provide a clue – even your nose. Over 15 years from 1998 to 2012, James Baraniuk, a longtime ME/CFS and GWI researcher at Georgetown University, became the first and thus far the last person […]

7 Ways To Tackle Low Self-Esteem With Chronic Fatigue Syndrome And Fibromyalgia

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  By Colleen Downey in The Mighty.   Self-esteem is generally described as the degree of regard or respect individuals have for themselves and is a subjective measure of worth that we place on our abilities and judgments; it is an understanding we create of our worth based on emotions and beliefs about how we […]

UK Charity Pledges £500,000 For Research Into ME In Norwich Research Park

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    From The Quadram Institute.   UK Charity Invest in ME Research is pledging £500,000 for continued research into the disease myalgic encephalomyelitis (ME or ME/CFS) in Norwich Research Park, UK (NRP). This major investment builds on the foundations already made for a UK/European Centre of Excellence for ME research hub in Norwich Research Park. The […]

General election 2019: What’s Pledged For Disability And Mental Health ?

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      By Damon Rose & Beth Rose in BBC News.   With 13 million disabled people in the country, plus their friends and family, the political parties have a huge community to court. Universal credit is still making headlines, while the main parties are divided on what to do with the social care […]

“Neither Dying, Nor Recovering”: Learning From ICUs To Solve ME/CFS And Fibromyalgia – A Synopsis

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    By Dominic Stanculescu in Health Rising.    From Dominic   I believe observations made in Intensive Care Units can further understanding of ME/CFS.   Indeed, following a severe injury or infection some ICU patients fail to begin recovery for unknown reasons. This condition, termed “chronic” or “prolonged critical illness,” is characterized by neuroendocrine dysfunctions perpetuated by cytokines and oxidative/nitrosative stress. Regardless of the initial injury or […]

You Don’t Look Sick: ‘People Think I’m Too Young To Be Disabled’

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    By Laura Abernethy in The Metro. ‘But you don’t look sick’ is something that people with chronic illnesses often hear. Others judge them based on their idea of what disability looks like. Our series speaks to a different person each week about their experiences of living with a long term condition and how […]

Disabled People Like Me Are Being Forced To Battle Daily For Our Most Basic Needs

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  By Susan McKinstery in Huffpost.   I was born in 1981, the year declared “International Year of Persons with Disabilities” by the UN. It heralded the beginning of the “Decade for Persons with Disabilities”, which saw the beginning of what would go on to become landmark equalities legislation and political policy making. The intention for […]

Are You A Clumper Or Slider ? The ESR ME/CFS And Fibromyalgia Poll

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By Cort Johnson in Health Rising.   It’s the simplest of medical tests. The erythrocyte sedimentation rate (ESR or SED rate) test simply measures the rate at which the red blood cells in whole blood descend in a test tube over a period of one hour. This non-specific measure of inflammation works because, during an inflammatory process, […]

York Disability Forum

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  Today I’ll be attending a meeting to see if creating a York Disability Forum will be helpful in giving us more of a voice in the area.  I’ll report back on here as to how it goes. If you’re in York and want to let me know of any good, bad or indifferent stories on […]

Solid Ground At Last ? Cytokines Make Good In Major ME/CFS Review

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  By Cort Johnson in Simmaron Research.   The immune system in chronic fatigue syndrome (ME/CFS) has been kind of like a mirage in the desert. Given the way the disease starts and its symptom presentation – so close to the “sickness behavior” produced during an infection – it seems that the immune system must […]

Meet The Researchers – Michael Van Elzakker (PhD) and Kenneth Kwong (PhD)

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From Solve ME/CFS Initiative.   Michael (Mike) Van Elzakker, PhD, a researcher at Massachusetts General Hospital and Harvard Medical School, has been an influential thought leader in how the field might leverage imaging techniques to assess neurological features of ME/CFS. Kenneth (Ken) Kwong, PhD and Suk-tak (Phoebe) Chan, PhD, experts in functional magnetic resonance imaging (fMRI), will co-lead the […]

‘They Think Disability Is Almost Worse Than Being Dead’

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By Kate Scotter in BBC News.   “I won’t let you make me feel bad for the things I cannot do, I am tired of being talked over by people like you.” To watch Tilly Moses perform her folk music on stage, there are no visual clues she’s disabled – although the message is there […]

Link Between Inflammation And Mental Sluggishness Shown In New Study

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From Science Daily.   Scientists at the University of Birmingham in collaboration with the University of Amsterdam have uncovered a possible explanation for the mental sluggishness that often accompanies illness. An estimated 12M UK citizens have a chronic medical condition, and many of them report severe mental fatigue that they characterize as ‘sluggishness’ or ‘brain […]

What An M.E. Crash Feels Like

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    From the Mummying And M.E. Blog.   NB: This is just my experience of an M.E. crash. This description is not going to be the same for everyone. My daughter is talking to me this morning, but I don’t understand what she’s saying. My husband has been doing the washing up downstairs, opening […]

Don’t Fight The Quicksand

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From Lorem Ipsum Life   When I was a kid I thought quicksand was going to be a much bigger problem.* Weirdly, as inaccurate as the movie depictions were of quicksand, they make an excellent analogy for activity and ME. TV and movies taught me that if I fall into quicksand, the worst thing I could […]

A Trial Of ME – Elizabeth’s Story

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  By Elizabeth Thorne in #MEAction. This is me, my story, I am one of the millions missing. I may not look ill to you, but if you see me, it will be because I am having a ‘good’ day because I am well enough to be able to get dressed and leave the house. […]

5 Things Councils Can Do To Make Areas More Accessible

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    By Heather Lacey in AccessAble.   As the world becomes more and more connected, we are increasingly fortunate to have the potential to explore more of what the UK’s towns and cities have to offer. Getting out and about to enjoy the activities and attractions that our Towns and Cities have can be […]

Trial By Error: “Bristol, It Is Time To Withdraw Your Complaints To Berkeley”

David Tuller

    By David Tuller, DrPH I have sent the following letter to Jane Bridgwater, Bristol University’s director of legal services and deputy university secretary. ********** Jane Bridgwater Director of Legal Services and Deputy University Secretary University of Bristol Bristol, UK Dear Ms Bridgwater: I have raised multiple concerns in recent years about research conducted […]

​GP Home Visits Under Threat

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    From Action For ME.   Action for M.E. has raised serious concerns with every Local Medical Committee (LMC) following the announcement of a motion at their conference by Kent LMC to stop home visits by GPs. LMCs are the independent bodies who work with the British Medical Association to shape policy. If successful, […]

My Typical Day As A Chronic Fatigue Blogger

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  From the Mummying And Me Blog.   Want to know what a day in the life of a chronic fatigue blogger looks like? Here I will try to sum up what my days look like during the week. Why did I choose to write this article? When I’ve spoken to friends and family about […]

Breaking Through The Stigma Of Chronic Fatigue Syndrome

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  On Mornings with Kia Handley.   It’s more than just being tired. It’s got nothing to do with being lazy or making things up or being a hypochondriac. Life with Chronic Fatigue Syndrome is full of stigma and frustration. So what is it like? Nelly Thomas, comedian and author, is a mother to a […]

Beneath The Surface, Part 3

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    From A Life Hidden.   The third and final part of a series analysing the British Association of CFS/ME (BACME) guidelines on severe ME.  I have chosen to write extensively on this subject, as the guidelines encompass several themes that are important to me. The BACME guidelines support the biopsychosocial (BPS) model of ME, which […]

Hello, Is It Me You’re Looking For ?

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    HELLO, IS IT ME YOU’RE LOOKING FOR ? I’m sure you know the feeling I’m sure you know the score Hit with ME, you soon get to see How things are not as before I hoped my friends would stay with me I seriously thought they would I thought that they’d care And […]

Dr Byron Hyde ME Expert

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By Wendy Boutilier in Global Advocates 4 Myalgic Encephalomyelitis.   Dr. Byron Marshall Hyde studied pre-medicine in the Faculty of Medicine, University of Toronto followed by a degree in Chemistry and Nutrition in 1961. His first medical employment was as an immunological research chemist at the Roscoe B. Jackson Laboratory, Bar Harbor, Maine – a leading […]

Chronic Fatigue Syndrome: Gradually Figuring Out What’s Wrong

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  By Anthony Komaroff, MD in Harvard Health Publishing.   In 1983, a health professional in her 30s walked into my office and said, “I’ve been healthy all of my life. A year ago, I came down with some kind of virus — sore throat, aching muscles, swollen lymph glands, fever. My fatigue was so bad […]

After Long-Awaited Recognition, Serious Research Begins On Chronic Fatigue Syndrome

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  By Vik Adhopia – CBC News.   A network of Canadian scientists is trying to make up for lost time in the search for a standard diagnostic test and treatment for a debilitating, poorly understood disease that had long been dismissed as a psychological illness. Myalgic encephalomyelitis ― commonly known as chronic fatigue syndrome (ME/CFS) ― is […]

Challenging Insensitive Comments And “Who Has It Worse” Competitions

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  By Jo Moss in A Journey Through The Fog.   “Life is not a competition. Life is about helping and inspiring others so we can each reach our potential.” Does anyone else feel like they have to bite their tongue a lot? Do you hide a lot of what you are feeling because confrontations […]

Getting At The Hurt In Chronic Pain

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    By Cort Johnson in Health Rising.   Pain – A Surprisingly Complex Experience Pain seems pretty elementary – it hurts! When it really hurts, you want to throw yourself out of your skin. It’s actually not so simple. Pain is often described as a complex, “biopsychosocial phenomenon“. The International Association for the Study […]

I Shouldn’t Have To Legitimize My Pain For Others To Believe Me

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  By Claire Brumback in The Mighty.   “Why doesn’t anyone believe me?” I ask myself this question too often. I have chronic pain and suffer with it every day, but no one believes me. On days I can’t get out of bed, or days I go to the ER because the pain is unbearable, […]

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