ME/CFS

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Initiative

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    From Stanford Medicine   Welcome The ME/CFS Initiative conducts extensive clinical research in an effort to improve diagnosis and treatment of this debilitating illness. Stanford Medicine has had great success in engaging and collaborating with nearly 50 researchers across Stanford University and beyond. Together, they have discovered various potential biomarkers that have confirmed […]

The Grace Charity For ME

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    From The Grace Charity site.   If you have M.E., the following might help you practically: G.P. If anyone can recommend good GPs in the Maidstone area for M.E. sufferers, please let us know. Try to get a supportive G.P. They are the gateway to much needed benefits. If you can’t get a […]

The Temporary ME/CFS And Fibromyalgia Recovery Stories – What Can They Tell Us ?

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  By Cort Johnson in Health Rising.   In 2015, Dean Echenberg, MD, PhD, a former public health official and Director of Disease Control in San Francisco at the height of the HIV/AIDS epidemic, had a question. His own course of ME/CFS had been anything but smooth. Echenberg had experienced years of illness punctuated sometimes […]

Developing Chronic Fatigue Taught Me To Live In The Moment

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  By Chloe Cooper in Voices.   In early January 2019, I was doing what I do every year – reviewing my achievements of the past 12 months and setting my goals for the year to come. Like countless others who go through the same process, this felt like an essential step to becoming the […]

The Hollow Man

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  By Andrew O’Connor in ABC News.   The catastrophic collapse of Tony Wallace’s life began slowly and silently. An episode of flu. A persistent illness. A feeling of fatigue. A sense something was not so much wrong, as not quite right. Over time, his ambiguous symptoms have morphed into a condition that defies medical […]

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 […]

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 […]

Natural Born Killers

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  From ME Research UK.   Despite their dramatic name, natural killer (NK) cells are actually a very important part of our immune system and help protect us from viruses by killing cells that have been infected. They can also target tumour cells. There is evidence to suggest that the cytotoxicity of NK cells (that […]

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 […]

From Infectious Disease Specialist To ME/CFS Expert: Dr. Bela Chedda Talks

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    By Cort Johnson in Health Rising.   I met Dr. Chheda of the Center for Complex Diseases at Ron Davis’s Working Group Meetings funded by the Open Medicine Foundation. She graciously agreed to talk more about how she approaches treating ME/CFS in her practice. I was particularly eager to talk to one of the younger […]

Inside The Isolation Caused By ME/CFS Hypersensitivity

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    By Jo Moss in A Journey Through The Fog.   I find hypersensitivity one of the hardest ME/CFS symptoms to cope with as it can be so isolating. Hypersensitivity comes in many forms: hypersensitivity to light, touch, noise, smells, vibrations, foods, medication, chemicals, heat, cold and irritants like pollen and dust. All of […]

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, chatting […]

4 Downsides (And Bright Sides) Of My Illness

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      By Siobhain Simper in The Mighty.   As you may be aware, living with a debilitating chronic illness is no fun: the challenges thrown at you by a disease which dictates your every move can be overwhelming. But today, I’m choosing to celebrate the bright side. By putting a positive spin on […]

Novel Insights Into Overtraining Syndrome Suggest Chronic Fatigue Syndrome (ME/CFS) Connection

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  By Cort Johnson in Health Rising.   Were you an avid exerciser prior to becoming diagnosed with chronic fatigue syndrome (ME/CFS)? Are you sure you were diagnosed correctly? Symptomatically, overtraining syndrome (OTS) and ME/CFS appear almost identical. Symptoms like fatigue, pain, post-exertional malaise, sleep problems and cognitive issues pervade both “syndromes”. If it was […]

Ten Ways To Prove That Chronic Fatigue Syndrome (ME/CFS) Is A Serious Illness

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      By Cort Johnson in Health Rising. Chronic fatigue syndrome is a terrible name. It’s such a terrible name that you have to give the people around you a little break. With that name, they’re almost doomed, at least at first, to think ME/CFS is a milquetoast kind of disease best suited to […]

The ‘All In The Mind’ Myth Of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

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  From Nursing In Practice. Health professionals should be made aware that ME/CFS is not a psychological illness and in order to improve patient care, nurses need to better understand this illness and its impact on patients. Nurses often witness close-up the impact of acute and chronic illness on patients. Myalgic encephalomyelitis (ME)/chronic fatigue syndrome […]

Why I’m Disappointed In The Lack Of Awareness About ME/CFS Almost 20 Years Post Diagnosis

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      By Emma Tierney in The Mighty.   We are 19 years on now from the year I was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The year a GP said to me in the most patronizing of voices, “you need an exercise bike” during an appointment that I’d been carried into by my […]

Did A Pivotal Moment For ME/CFS Just Happen ?

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      By Cort Johnson in Health Rising.   The National Institutes of Health (NIH), with its pitiful funding, has been a thorn in the ME/CFS community’s side for decades. For decades advocates have thrown everything they could – heartbreaking stories, demonstrations, insults – at the NIH in vain.  Even the much acclaimed 2015 […]

“Just Be Positive!” Toxic Positivity, ME/CFS And Fibromyalgia

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  By Lori Madeira and Cort Johnson in Health Rising.    In the face of a chronic illness, our friends and family can resort to simple solutions: just try and be positive they might advise. Look on the bright side. Focus oun what you can do. It’s not bad advice, but it often comes across as out […]

Why Is Music So Hard For People With ME/CFS ?

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  By Jody Smith in Pheonix Rising. Oh, how I love music! This magic can lift our spirits and calm our weary minds. Maybe it can even help us heal. Goodness knows, we who live with ME/CFS need these things. We’re probably not getting much of this elsewhere. So if music is so good for […]

Chronic Fatigue Syndrome, ME/CFS

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    From Cornell Research.     A million or more people in the United States suffer from myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), but remarkably little is known about the cause of the disease, and effective therapies are lacking. ME/CFS is characterized by debilitating fatigue that is not relieved by […]

A Winter’s Tale – A Former Mountain Climber Reflects On Post Exertional Malaise And ME/CFS/FM

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By Simon Parker in Health Rising.   Fifteen years ago I was diagnosed with Fibromyalgia and ME (aka Chronic Fatigue Syndrome), a debilitating condition that includes continual pain and delayed fatigue as its primary symptoms. I often find myself trying to explain to other people what the delayed fatigue is like by giving an example […]

Guest Blog: Life In The Slow Lane – Musings Of A Police Officer On A Diagnosis Of ME/CFS

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  From Disabled Police Association.   Colin Paine is a Detective Chief Superintendent in Thames Valley Police. He is currently working on the Police Spending Review with the NPCC. Here he reflects on his diagnosis of Myalgic Encephalopathy (ME)/Chronic Fatigue Syndrome (CFS).   Police work feels inherently fast paced. It is in the nature of our work that […]

The Hummingbird: Could A Blood Flow Enhancer Help With Fibromyalgia, POTS And ME/CFS ?

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  By Cort Johnson in Health Rising. A Different Approach to Fibromyalgia “The effects of not getting good blood flow to your brain, joints and muscles?…. Fibromyalgia” – Vital Motion Erik Hiester D.O., is not your ordinary doctor. He’s an interesting blend of engineer and doctor. Hiester’s first love was biomedical engineering (B.S. and M.S.). Wanting […]

ME/CFS, Naviaux’s Cell Danger Response And A Nervous System Under Threat

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    By Veronique Mead M.D. in Health Rising.   Thanks again to Veronique for providing her intriguing take on chronic fatigue syndrome (ME/CFS). This is one of a series of articles from Health Rising which feature hypotheses created by health care professionals with ME/CFS or who are associated with ME/CFS. (It is a long post – you […]

A Novel Study From Jax ME/CFS Center On A Human T Cell Subset Involved In Sensing The Microbiome

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  From JaxMECFS website.   Jackson Labs ME/CFS Collaborative Center Director Derya Unutmaz and his collaborator and microbiome expert Julia Oh recently published a study in the journal Mucosal Immunology, titled “Tuning of human MAIT cell activation by commensal bacteria species and MR1-dependent T-cell presentation.” Mucosal-associated invariant T (MAIT) cells are a type of T cell present in […]

ME/CFS and Freeze: A Metabolic State Of Hibernation That Is Not In Your Head

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By Veronique Mead in Chronic Illness Trauma Studies.   This post introduces the relationship between chronic fatigue syndrome aka ME/CFS and freeze and similar death-like states such as hibernation. It draws from a 2016 study showing statistically significant objective metabolic changes in ME/CFS and how it is a very real physiological state that is not psychological. […]

School, University And Work With ME/CFS

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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 […]

Trial By Error: FITNET-NHS Recruitment Ad Promotes “Recovery”

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  By David Tuller, DrPH.   A British medical education company has recently disseminated a recruitment ad for a high-profile pediatric study of treatment for what it calls CFS/ME. The recruitment ad’s headline describes the intervention being investigated as “effective,” without caveat or reservation. (Full headline: “Chronic fatigue syndrome (CFS/ME): effective home treatment for teenagers”) […]

New Research On Tentative ME/CFS Irritable Bowel Syndrome Subgroup

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    By Rachel Black in Bateman Horne Center.   Do you have irritable bowel syndrome? If you do, you’re not alone – the presence of irritable bowel syndrome (IBS) alongside ME/CFS may constitute a distinct ME/CFS subgroup. This article reviews and summarizes a new research paper Dr. Bateman and colleagues published on July 3, 2018, titled Insights […]

What I Miss About My Life Before ME/CFS

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  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’ […]

A Plan To Replicate Mark Davis’s Remarkable Findings Of Immune Activation In ME/CFS

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  By Simon McGrath in ME/CFS Research Review.   A team led by Edinburgh University’s Professor Chris Ponting has won funding for a PhD student who would follow up and expand on remarkable recent findings made at Stanford University where Dr Mark Davis may have pinpointed a major issue in the immune system in ME/CFS. Last year, Davis […]

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