ME Research And Researchers

Is The Brain Causing The Small Fiber Neuropathy In Fibromyalgia (And ME/CFS ?)

Cort_Johnson

    By Cort Johnson in Health Rising.   It seemed ever so clear. The reduction in the number of small nerves in the skin and eyes of roughly forty percent or so of the people with fibromyalgia (FM) and chronic fatigue syndrome (ME/CFS) must bring the body – as opposed to the brain – into […]

Trial By Error: An Ill-Informed Article In The Guardian

David Tuller

      By David Tuller, DrPH People who know little or nothing about the illness or cluster of illnesses variously called myalgic encephalomyelitis, chronic fatigue syndrome, CFS/ME, and ME/CFS can’t seem to stop writing stupid and ill-informed stories about it. And Professor Michael Sharpe seems to blame “Americans”–rather than his own disastrous research–for his […]

Words From A Hidden World

Blog

    By Naomi Whittingham.   Welcome  to my blog.  The main purpose of this site is to bring together my existing work, but I also hope to add new writing from time to time.  I have never blogged before and am looking forward to the freedom of writing as I wish, with full editorial control.  (The downside is […]

New Hub Of ME/CFS Research Opens At Harvard Plus The “Hidden Gem” And New Insights

Scientist using a microscope

    By Cort Johnson in Health Rising.   Times are changing. The Stanford area with its bevy of researchers and doctors (Ron Davis, Robert Phair, Mark Davis, David Kaufman, Bela Chedda, Jose Montoya, Rahim Esfandyapour, Michael Zeineh, Fereshteh Jahanbani and others) seemed like “it” for ME/CFS. But look at Boston now! A new hub […]

Netflix Sued For Defamation By ‘Afflicted’ Subjects Who Say Docuseries Painted Them As “Crazy Hypochondriacs”

Netflix

    By Erik Pedersen in Deadline.   The 50-page complaint (read it here) was filed Wednesday in Los Angeles Superior Court by defendants including Jamison Hill, Pilar Olave, Jill Edelstein and Bekah Dinnerstein. Referred to in the suit as “the Afflicted Four,” they claim they were “duped by Plaintiffs into participating in a salacious reality […]

Phoebe & Georgina’s Sponsored Kayak !

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    By Georgina & Phoebe in Let’s Do It for Myalgic Encephalomyelitis.   Even a live Second World War grenade  couldn’t stop us! On Sunday the 28th of July we began our quest to conquer a 25 mile kayak to raise money for Invest In ME Research. This journey consisted of a very early start, […]

Aid Without Asking: How To Support Someone With ME

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  By Jonny Foster in #MEAction.   The love of my life battles ME/CFS. It’s a disease that my father has also struggled with since I was a boy, so it’s one I know well. I knew life wasn’t going to be simple when we met, but I dove in head-first anyway. I can’t say […]

Myalgic Encephalomyelitis Diagnosis, Treatment & Prognosis

Doctor

    by Louise Sargent in ME Support.   Diagnosis There is no test or cure for Myalgic Encephalomyelitis (M.E.) but there are guidelines to help doctors diagnose and treat it. It can take a long time for the condition to be diagnosed, as other conditions that cause similar symptoms need to be ruled out first. Therefore, you […]

Tracking Peripheral Immune Cell Infiltration Of The Brain In ME

brain-power

    Principal Investigator Prof. Jarred Younger Institution University of Alabama, Birmingham, Alabama, USA Start date June 2018 Background and aim Many of the characteristic symptoms of ME/CFS suggest that the immune system is activated in the brains of people with the illness, leading to the release of inflammatory chemicals. This neuroinflammation is known to […]

#MEAction Responds To Attacks On ME Community In The Guardian And Psychology Today

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  By #MEAction.   In the past two weeks, The Guardian UK and Psychology Today US have published articles portraying the myalgic encephalomyelitis (ME) community as an angry, misguided mob using social media to denigrate scientific research. Both articles focus on the criticism that Dr. Michael Sharpe, one of the key authors of the PACE trial and […]

8 Years Doing It For ME !

Invest In ME

    If you have been with us from the start then please congratulate yourself on your part in changing the landscape of research and future treatment of ME in UK and beyond! Also please accept our massive thanks for your ongoing support to help the charity Invest in ME Research achieve so much. If you are […]

Straight Talk From Carol Head As She Steps Down From Solve ME

Carol Head

  By Cort Johnson in Health Rising.   ME/CFS Rears Its Head Again A commitment to social justice runs in Carol Head’s blood. She founded a non-profit which has given away millions to support entrepreneurs who work on global poverty, and was a founding board member of another non-profit that tells the stories of marginalized women’s lives. Her work […]

RACGP’s 2015 Guidelines On Graded Exercise Therapy Published In A UK Medical Journal

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  By Laura Beere in Emerge Australia.   Apologies for all the acronyms and brackets in the post below. We’ve tried to make this as clear as possible so that we can keep you informed about a (sadly this time – negative) development that could impact on the treatment and welfare of people with ME/CFS. […]

The Emerge Australia Media And Research Digest (028) 26th July 2019

Australia

  Welcome to the Twenty-Eighth Emerge Australia Media and Research Digest! The fortnightly summary of research and media about Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) If you’d like the Digest to drop directly into your inbox every fortnight you can sign up for the Digest here. (This will ONLY sign you up for the Digest – this […]

Emerging Insights #1: McGregor’s Grand Conception Of ME/CFS

Australia

  By Cort Johnson in Health Rising.   This is the first in a series of blogs that report on the recent EMERGE conference in Australia. The different conference format – which allowed for long presentations – allowed the presenters to dig more deeply into their topics than usual. Longtime Australian metabolomics researcher Neil McGregor […]

Potential Dangers Of Exercise Or Activity For ME And Chronic Fatigue Syndrome

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    From the How To Get On Blog.   We are taught that exercise is supposed to make us feel better. Staying active is supposed to make us healthier. Getting out of bed is supposed to improve our quality of life. Sadly, for people with Myalgic Encephalomyelitis or “Chronic Fatigue Syndrome,” the opposite can […]

Invest In ME Research Newsletter July 2019

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Invest in ME Research is an independent UK charity campaigning for and facilitating biomedical research into myalgic encephalomyelitis (ME). More details of the charity are here.   Clinical trial at Quadram At the IIMEC14 international conference in London in May Professor Simon Carding from Quadram Institute announced the intention to conduct a clinical trial for ME in Norwich […]

Onset: Part III (Connections)

Jen

  By Jennifer Brea.   I’ve previously written about how a bad mold exposure and my acute, viral onset of myalgic encephalomyelitis (ME) could have directly and indirectly damaged my connective tissue, including the ligaments in my neck, causing craniocervical instability (CCI). A key mediator of that damage might have been mast cell activation and collagen-degrading enzymes. The coup de grâce (and it really was, oddly, […]

Chronic Fatigue Syndrome (ME/CFS) Article Rocks Top Medical Journal

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    By Cort Johnson in Health Rising.   It took Tony Komaroff over thirty years to get this done but it may have been worth it. Komaroff, Harvard doctor, researcher and ME/CFS advocate, has been studying, writing about and advocating for ME/CFS research since at least 1987 when he was the senior author on […]

ME/CFS Research: The First Quarter Of 2019 In Review

Scientist using a microscope

  By Rochelle Joslyn (PhD) Edited by Allison Ramiller, in Solve ME/CFS Initiative.   2019 is off to a strong start for ME/CFS research! From the search for sensitive and specific biomarkers in neuroimaging and CPET testing, to the use of next generation (RNA) sequencing in transcriptomic analyses of peripheral blood, findings from the first […]

Extreme Itch In Fibromyalgia And Chronic Fatigue Syndrome

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By Adrienne Dellwo in Very Well Health.   Because fibromyalgia and chronic fatigue syndromeinvolve the central nervous system, we get all kinds of strange things goings on with our nerves. Along with burning, tingling, numbness, and pinpricks, we can experience itchiness that can be severe and persistent. It’s maddening, especially since scratching doesn’t do a thing to help. For […]

Trial By Error: Some Thoughts On MUS And Bermingham; My Letter To Professor Payne

David Tuller

    By David Tuller, DrPH In February, I wrote a post tracking how a core finding from Bermingham et al, a 2010 study, has been misrepresented repeatedly in claims about the costs to the National Health Service of so-called “medically unexplained symptoms.” The misrepresented finding has been cited by proponents of an NHS effort to divert people […]

Action For ME Survey

Survey

        Hi everyone. I’ve received the following from Action for ME and pass it on should you wish to take part: Hello I am getting in touch to introduce myself as Action for M.E.’s Policy and Engagement Officer. A large part of my role is engaging with politicians to improve services and […]

My ME Puzzle

Jigsaw

    MY ME PUZZLE From our early days as we grow We learn and add to what we know Each piece of knowledge builds a picture To help us make our living richer We find the people who fit right in Our family, friends, our kith, our kin We find beliefs, our way, our […]

The Epstein-Barr Virus – Could It Be Causing Neuroinflammation In ME/CFS ?

Simmaron

    By Cort Johnson in Simmaron Research.   BV has been a virus of interest since almost day one in chronic fatigue syndrome (ME/CFS). In fact, at one point, EBV was such a hot topic that ME/CFS was called for a time “chronic Epstein-Barr virus” disease. While studies have generally failed to find evidence […]

My ME And Me: ‘I Don’t Remember What It’s Like To Not Be Ill’

Lost

      By Hannah  Price in BBC News.   It’s hard not to feel suffocated by the stale air and sterile, white ceilings of a hospital ward. The incessant beeping and patient grumbling provides a constant, miserable soundtrack as you wish you were literally anywhere else. When I was admitted to hospital in February, […]

Funding For ME Research…… Or Lack Of

Soap Box

  Yesterday I read a report that there’s been a big breakthrough in curing male pattern baldness in America. Research in 2016 showed that the US was putting six times the funding into baldness research than that put into research into Myalgic Encephalomyelitis  (ME). Absolutely astonishing that vanity should come before an illness that kills […]

Trial By Error: An Update About The Pediatric MUS Systematic Review

David Tuller

    By David Tuller, DrPH This week I raised concerns about a second systematic review that cited the dung heap known as the Lightning Process study, published by Archives of Disease in Childhood two years ago. This new review did not mention the paper’s egregious deficiencies. After the appearance in April of an earlier systematic review that highlighted […]

The ME/CFS And Fibromyalgia “What Would You Have Done Differently” Survey

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By Cort Johnson in Health Rising. when you get it right you pass it on… Gary Snyder   When things go wrong, the “If only I had known! “, “If only I could have that back!” mantra shows up in spades. Of course, we all make mistakes – major mistakes – that we wish we could […]

Stanford Researchers Looking For ME/CFS Patients With CCI

Research Study

  By Jennifer Brea in Medium.com.   The Stanford Chronic Fatigue Syndrome Research Center would love the participation of patients with diagnoses of both Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Craniocervical Instability (CCI) in an ongoing ME/CFS research study. They are looking for patients who: Have been diagnosed with ME/CFS Have been diagnosed with craniocervical […]

ME Association May Summary of ME/CFS Published Research – 19 June 2019

Research

  By Charlotte Stephens, Research Correspondent, ME Association. The Index of Published ME/CFS Research has now been updated to take account of the research that has been published during the month of May 2019. It’s a little later than normal due to ME-related absence. The Index is a useful way to locate and then read all relevant research […]

‘It’s Not Just About Being Tired’ Says Bognor Regis Teenager Who Has ME

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  From the Bognor Regis Observer.   “I used to do a lot of walking and family days out, most Sundays we would go on walks to forests and beaches. “I would spend time with friends and have sleepovers. I don’t see my friends any more. I had to leave college. Having no energy every […]

ME/CFS Patients Worldwide Face Scepticism And Ignorance From Doctors

Doctor

  By Jo Moss in A Journey through the fog.   I would like to take the opportunity, for ME awareness month, to talk about the problems ME/CFS patients like myself face getting a diagnosis, and also the general ignorance surrounding ME/CFS within the medical profession. I know not all doctors are bad, but sadly […]

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