ME Blogs

A Letter To My Nearest And Dearest

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  From the Mummying and M.E. Blog.   To my wonderful friends and family (you know who you are), I want to attempt to say thank you to you all but also sorry at the same time by writing this open letter. I’m not entirely sure I’ll manage but here goes. For those who haven’t […]

M.E Myths Debunked: Part 1

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  By Lorna McFindlow in the Cream Crakered Blog.   Two years ago, when I was diagnosed with M.E, I knew a little about it because a friend of mine had it, but other than that I was clueless. From what I was told at the time of my diagnosis, I understood that I was […]

Marcie Zinn Was A Force For ME

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    From Meaction. We are deeply saddened by the sudden death of Marcie Zinn, PhD, who was a dedicated researcher, advocate and person with myalgic encephalomyelitis (ME). Marcie died of sudden heart failure on Dec. 28, 2019. Marcie and her husband, Mark, founded the Neurocognitive Research Institute (NCRI), a non-profit that specializes in 3D-mapping of the […]

Scope Accused Of ‘Exploitation’ After Seeking Disabled Writer To Work For Free

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    By John Pring in Disability News Service.   A disability charity has been accused of “exploitative” and “disgraceful” behaviour after asking disabled journalists to write an article for its website without payment. The charity Scope sent out a message on social media this week seeking a “disability blogger” who could write an article […]

30 Years Beyond Comprehension

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  From A Life Hidden.   Today is the 30th anniversary of the day I became ill.  How surreal those words sound, even after three decades spent adjusting to them.  My illness now accounts for three quarters of my life: a span of time so vast that it defies comprehension. When I fell ill as […]

Stop Assuming I’m Not Disabled Just Because I Don’t “Look Disabled”

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  By Rachel Carrington in Rooted in Rights.   I park my car in a parking space reserved for those with disabilities. My door is barely open before I’m confronted by a woman who demands to see my handicap parking placard. Her mother is disabled, and she needs the space. I point her toward my […]

When The Triggers For Your Illness Are Constantly Changing

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    By Lisa Alioto in The Mighty.   For the past six years I have lived with myalgic encephalomyelitis (ME). It’s a multi-system disease that affects the neurological, endocrine, immune and energy metabolism systems. Its hallmark symptom is post-exertional malaise (PEM). PEM is a reduction in functioning and a severe worsening of symptoms after even minimal exertion. […]

How I know ME/CFS* Is A Physical Illness

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    By Una Hearne.   Introduction I am writing this to put a final nail in the coffin of the idea that ME/CFS is a psychosomatic issue; that it is ‘all in the mind’. Having both the physical illness ME/CFS (from age 16) and the mental illness Depression (since birth), I am in a […]

New Government Provides Details On Five Disability Policy Pledges

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  By John Pring in Disability News Service.   The new Conservative government has described how it plans to fulfil the five major disability policy pledges it included in its general election manifesto. The details were included in a briefing document published alongside last month’s Queen’s speech by prime minister Boris Johnson. They cover social care, a […]

We Celebrate The Life And Legacy Of A Warrior For ME

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  From #MEAction.   It is with heavy hearts that we share the passing of ME community advocate, Cindy Siegel Shepler. Cindy lived with myalgic encephalomyelitis (ME) and multiple other health issues. She dedicated much of her increasingly limited time and energy to advocacy, increased awareness, and increasing research funds for ME. She had a […]

Book Exposes ‘Horrifying’ Levels Of Abuse Faced By Disabled People On Public Transport

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  By John Pring in Disability News Service.   A new book by a disabled researcher has detailed the “horrifying” levels of disability hate crime that take place every day on public transport across the UK. David Wilkin says the results of his research are “sometimes startling and almost always distressing” and illustrate the “ongoing […]

5 Tips For Making Your Christmas Party Accessible

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  By Kerry Thompson in AccessAble.   Disability blogger and campaigner Kerry Thompson, who has Muscular Dystrophy and uses a wheelchair, gives us her top 5 tips for making Christmas parties accessible. December is here! The shops are filled with Christmas Trees and decorations, the bars and restaurants are advertising booking Christmas parties, it’s a […]

Living With An Unsociable Illness

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  From the Not Just Tired Blog.   As I’m writing this post, I’m sat in bed, having to take time out to rest, whilst we have a family member staying with us for the weekend. Enjoying listening from afar to the lively chatter, yet not a part of it. Would I not rather be downstairs, […]

BMJ Should Retract Flawed Research Paper On Chronic Fatigue Syndrome

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    By David Tuller in Statnews.com.   Few journals have been more admirable than The BMJ (formerly the British Medical Journal) and some of its sister publications under the BMJ brand in highlighting issues of direct significance to health care consumers. So it is baffling — and troubling — when BMJ editors fail to […]

Lewisham Commission Hopes To Put Disabled People At Heart Of Decision-Making

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  By John Pring in Disability News Service.   A local authority has become the second in London to set up an independent, user-led commission to investigate the barriers faced by disabled residents. Lewisham Disabled People’s Commission (LDPC) will be led by disabled people and will examine organisational, attitudinal and physical barriers faced by disabled […]

Tips On How To Survive The Festive Season

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  By Jo Moss in A Journey Through The Fog.   Christmas can be a particularly hard time of year for people living with chronic ill-health. It can be a mental and physical strain, filled with potential pitfalls. I have to admit I’ve never been a Christmassy person. We (my family) didn’t celebrate Christmas when […]

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 […]

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 […]

“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 […]

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, […]

Antibiotics: Even Low Use In Children Can Have A Negative Impact On Health – New Research

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  By Oliver van Hecke in The Conversation.   GPs in the UK carry out over 300m patient consultations every year and at least a quarter of these deal with children. Almost two-thirds of such appointments are for coughs, sore throats, or earaches – illnesses which young children commonly get. Doctors and nurses group these types of illnesses […]

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 […]

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 […]

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 […]

The 20 Best Supplements For Pain & Fatigue

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    By Jo Moss in A Journey Through The Fog.   Pain and fatigue are probably the two most common symptoms across a whole host of medical conditions. It is estimated that around 43% of people in the UK experience chronic pain – this equates to 28 million in the UK alone. In the […]

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 […]

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 […]

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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