ME/CFS

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

Nervous system

    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

Microbiome

  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

Nervous System

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

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 […]

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

David Tuller

  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

research

    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

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’ […]

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

Research

  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

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 […]

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

Exercise

  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

Exercise

  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

quadram-logo

  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)

Feeling_Fatigued_and_Drained_Ayurvedic_tips_to_Re-energize_Yourself

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

Cort_Johnson

  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

Free-Valerie

  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

Ron Davis

  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 ?

NICE logo

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 […]

How Disabled People Care For Each Other When Doctors Can’t

Caring

  By David M Perry in Pacific Standard.   In her new film Unrest, Jennifer Brea offers a groundbreaking look at the power of community where medicine falls short. When Jennifer Brea was 28 years old, she got sick and spiked a fever of 104.7 degrees. The fever went down, but soon she found herself […]

NIH Striving To Avoid False Hope In Chronic Fatigue

Scientist using a microscope

  By Joyce Frieden, in, MedPage Today   BETHESDA, Md. — The National Institutes of Health is trying hard to bring real hope — not false hope — to patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), NIH director Francis Collins, MD, PhD, said during an exclusive interview with MedPage Today. “Five years ago … there was this big […]

How I Remain An Incurable Optimist, Even With Chronic Illness

Lonely

  By Lisa Alioto in The Mighty.   I am an incurably optimistic person. That is who I am, my heart, my soul and how I eat, live and breathe. Sometimes though, life even gets to the best of us optimists and that’s OK. Sometimes you have to give yourself permission to simply absorb reality in its […]

Fast Food Makes The Immune System More Aggressive In The Long Term

Immune

  By Prof. Dr. Eicke Latz and Dr. Anette Christ from University of Bonn.   The immune system reacts similarly to a high fat and high calorie diet as to a bacterial infection. This is shown by a recent study led by the University of Bonn. Particularly disturbing: Unhealthy food seems to make the body’s defenses […]

Linda Tannenbaum Worldwide Tour Talk

Open Medicine Foundation

  From The Open Medicine Foundation.   As a part of the 2017 End ME/CFS Worldwide Tour, Linda Tannenbaum, CEO/President, spoke in six European countries and seven U.S. cities. Each visit included a presentation, Q & A session, and personal meet and greet. On the tour, Linda had the honor of meeting hundreds of patients, parents […]

Cellular Energy Production Takes Big Hit In Chronic Fatigue Syndrome (ME/CFS) Study

2-mitochondria

  By Cort Johnson in Health Rising.   The two-day exercise study results suggest that the ability to produce energy after exercise in chronic fatigue syndrome (ME/CFS) is blunted, and the search is on to identify blockages in cellular energy that could explain that.  Lead by Cara Tomas, Julia Newton and company have stepped into […]

To Those With ME/CFS Who Feel Like Giving Up

Don't Give Up

  By Sally Rudderty in The Mighty.   I’m talking to you, yes you. The person lying there in the dark. The person struggling with unbearable fatigue and pain. The person who feels like giving up. I’m talking to you (actually I’m whispering because I know noise hurts your head). And I’m telling you: Don’t give up. Not just yet. I know […]

A Farewell – Anne’s Last Post To The ME Community

Anne

  From Health Rising.   This is a lengthy farewell blog from Anne who has been suffering with severe ME and burning skin for some years and who has decided that she is unable to continue with her courageous fight. It is a long and heart wrenching article that comprehensibly explains the severity of ME […]

Sheringham Film And Panel Event Exposes Hidden Struggle Of Patients Living With Chronic Fatigue

Norman Lamb MP

  By Eleanor Pringle in North Norfolk News.   The hidden struggles of life with Chronic Fatigue Syndrome (CFS) will be highlighted this month as the Sheringham Little Theatre and Norman Lamb back an inspiring North Norfolk organisation. The Sheringham CFS group is the only support group in North Norfolk which focuses specifically on the disease. Now, […]

A Reboot For Chronic Fatigue Syndrome Research

research

  By Amy Maxmen in the Nature International Journal of Science.   Name a remedy, and chances are that Elizabeth Allen has tried it: acupuncture, antibiotics, antivirals, Chinese herbs, cognitive behavioural therapy and at least two dozen more. She hates dabbling in so many treatments, but does so because she longs for the healthy days […]

A Plea From A Fallen Doctor On Chronic Fatigue Syndrome (ME/CFS)

Doctor

  By fallendocR53-82 in Reddit.   I was educated at Baylor and practiced medicine for 30 years. I had a thriving practice, a rich social life, and excellent physical and mental health. I loved what I did and loved my life. I ran marathons, spoke at conferences, and chaired non-profits. I am now completely bedridden from post […]

When The ‘Holiday Season’ Is No Holiday At All For Those With ME/CFS

Lonely

  By Jody Smith in Phoenix Rising.   The holiday season just doesn’t live up to the hype, especially for the chronically ill and their caregivers. You people with ME/CFS know all too well what I’m talking about. I am one of the lucky ones, and I know it. My symptoms are generally mild and while […]

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

Cort_Johnson

    By Cort Johnson in Health 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 […]

Carly Maryhew’s Open Letter To TEDxBristol Regarding Esther Crawley’s “Disrupting Your View Of ME” Presentation

TED Talks

  By James C Coyne in the Coyne Of The Realm Blog.   Carly Maryhew’s recent open letter to TEDxBristol concerning the failure of Esther Crawley’s recent talk to adhere  to TEDx’s explicit content guidelines is a gem, well worth a read by a general audience. At one level, her letter is a contribution to the ongoing […]

Educating Doctors About ME – One Step Forward

Doctor

  By Adriane Tillman in #MEAction.   A Medical Education Working Group has been created by the Chronic Fatigue Syndrome Advisory Committee (CFSAC) to provide recommendations to the U.S. Secretary of Health on educating healthcare providers on ME/CFS. The working group plans to disseminate resources and clinical guidance to healthcare providers, as well as provide training and […]

Small Nerves – Big, Big Problem ? Drug Trial Points Finger At Autoimmunity In Fibromyalgia And ME/CFS

Cort_Johnson

  By Cort Johnson in Health Rising.   Dr. Anne Oaklander MD, PhD, is making a difference – maybe a very big difference in the lives of many. Making a difference runs actually runs in her  family. Her mother, the neurologist Louise Rapin, was one of the seminal figures advancing the concept of autism spectrum disorder. […]

Chronic Fatigue Syndrome, Fatigue, And Safety

cells

  by Kathleen Hoffman in Medivizor.   What’s the difference between Chronic Fatigue Syndrome and fatigue?  A huge difference according to an article in the Proceedings of the National Academy of Sciences that focused on a cutting edge research study conducted at Stanford University.  Researchers found that inflammation is the driver of Chronic Fatigue Syndrome or it’s other name myalgic encephomyelitis. […]

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