ME/CFS

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 […]

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

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  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 […]

Stanford Exercise Study Shows Different Immune Response In Chronic Fatigue Syndrome (ME/CFS)

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  By Cort Johnson in Health Rising.   It’s always good to see an exercise test in chronic fatigue syndrome (ME/CFS). It’s harder on the patients – kudos to them for participating in the study –  but study after study has shown that exercise allows researchers to dig deeper into what’s going on. Dr. Montoya […]

Exercise Elevates Blood Signature Difference Between People With, Without Chronic Fatigue Syndrome

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  By Bruce Goldman in SCOPE.   A bout of exercise is about the last thing you’d imagine a person with chronic fatigue syndrome – also known as myalgic encephalomyelitis and often designated by the acronym ME/CFS – would want to endure. And you’d probably be right. But a new study suggests that a blood test following exercise may be a […]

ME/Chronic Fatigue Syndrome

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  From The Quadram Institute.   Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), is a severely debilitating condition that is thought to affect up to 250,000 people in the UK. Symptoms include widespread pain, extreme tiredness and an inability to concentrate. The causes of ME/CFS aren’t known, and there are no effective […]

Post-Exertional Malaise (PEM) And Graded Exercise Therapy (GET) In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

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By S. Eyssens.   Preface: “The public have an insatiable curiosity to know everything, except what is worth knowing.”Oscar Wilde. Until Europeans discovered Australia, Black Swans did not exist, let alone could they even be imagined. They did not make sense, nor could they be, as they challenged common sense and common knowledge at that time in our […]

The Cortene Way: New Drug To Be Trialled In Chronic Fatigue Syndrome (ME/CFS) Soon – Pt. I

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  By Cort Johnson in Health Rising.   Research funding for chronic fatigue syndrome (ME/CFS) has been poor at best but clinical trials have elicited a wholly different degree of disappointment altogether. Few clinical trials are ever done and those are often involve alternative approaches. The 6 active clinical trials listed in clinicaltrials.gov, for instance, include […]

Bearing Witness For ME/CFS – Valerie Free Lights Up A Hidden World: Pt. I Valerie’s Story

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  By Cort Johnson in Phoenix Rising.   ME/CFS needs witnesses – people who can stand firm in the face of denial and rejection and tell their story to the world. Each time we responsibly speak the truth to the medical profession, or our families, or our friends, or the NIH or whomever we begin […]

Ron Davis Talks On ME/CFS………And Texas Listens

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  By Cort Johnson in Health Rising.   Ron Davis was invited to the University of Texas to talk to the biological and bioengineering departments over two days. His long talk was putatively on developing affordable technologies that can be used by doctors, but it ended up being more than that. On the technology side, […]

The NICE Guidelines – Starting Again ?

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From the mrspoonseeker blog.   There was some encouraging feedback from the recent NICE ME/CFS Guidelines Stakeholder meeting, an early milestone in the long process of revising the guidelines. But was such encouragement justified? I wasn’t there myself, so I am grateful to those who attended on our behalf. Blogger and patient advocate Sally Burch reported that […]

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