myalgic encephalomyelitis

Carol Monaghan MP Secures Backbench Debate On ME On 24 January 2019

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  Carol Monaghan, MP for Glasgow NW. SNP Spokesperson for Education, Armed Forces & Veterans, is delighted that @CommonsBBCom have granted a Backbench debate on #ME. This debate will take place on Thursday 24th January. Thanks to everyone who has campaigned to achieve this.

The Best, Most, Biggest And Least Of 2018 In Chronic Fatigue Syndrome And Fibromyalgia

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  By Cort Johnson in Health Rising.   The Best, Most and Least of 2018 A look back at a most interesting year which has to start with Cortene… Treatment Nicest Surprise It wasn’t supposed to go like this. First, in a disease like ME/CFS, you’re supposed find a repurposed drug or two to treat […]

What Exactly Is Myalgic Encephalomyelitis ?

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    By Torstein Egeland et al in Tidsskriftet.   Although there are good diagnostic criteria for myalgic encephalomyelitis, knowledge of the disease is often lacking and this can result in misdiagnosis and incorrect treatment. There is a need for more research, greater expertise among clinicians, and refinement of the diagnostic criteria. In the literature and […]

Changes In The Transcriptome Of Circulating Immune Cells Of A New Zealand Cohort With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Research

By Eiren Sweetman et al in Sage Journals.   Abstract. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a poorly understood disease affecting 0.2%–2% of the global population. To gain insight into the pathophysiology of ME/CFS in New Zealand, we examined the transcriptomes of peripheral blood mononuclear cells by RNA-seq analysis in a small well-characterized patient group […]

Neuroinflammation And Cytokines In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Critical Review Of Research Methods

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By Michael B. VanElzakker, Sydney A. Brumfield and Paula S. Lara Mejia in Frontiers in Neurology.   Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is the label given to a syndrome that can include long-term flu-like symptoms, profound fatigue, trouble concentrating, and autonomic problems, all of which worsen after exertion. It is unclear how many individuals with this diagnosis are […]

Neuroinflammation Review By #MEAction Research Fellows

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  By Jaime in #MEActionNet.   Though science may speed along a bit fast to ‘catch’ on audio, you can also listen to me read this article on #MEAction’s Soundcloud here. We are pleased and proud to announce that our two research fellows, Sydney A. Brumfield and Paula S. Lara Mejia, have written and released their first […]

Opinion: Teaching Unions’ Stance On Education Plans For Students With Disabilities Sets A Worrying Precedent

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By Adam Harris in thejournal.ie.   As schools open up across Ireland this week, it is business as usual for most students. They will be taught by the same teacher, in the same way, with the same curriculum and supports that were always in place. Indeed, after a day or two, it will probably feel […]

What It’s Like To Live With Chronic Fatigue And Depression

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    By Eleanor Segall in Metro Lifestyle.   Chronic fatigue syndrome, also known as ME (myalgic encephalopathy) is estimated to effect 250,000 people in the UK. It is a serious and debilitating illness that at times can render its sufferers unable to function effectively due to the level of fatigue. ME is more than just exhaustion. […]

Company Praised For ‘First Accessible Parking Bay For Charging Electric Vehicles’

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  By John Pring in Disability News Service.   Campaigners have welcomed the decision to install what is believed to be the country’s first accessible parking bay for disabled people who need to recharge their electric vehicles. Only holders of blue parking badges who also need to recharge their electric vehicles will be allowed to […]

A Brightening Future: The State Of ME/CFS Research

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  By Simon McGrath in ME/CFS Research Review.   OPINION Although there are no treatments for ME/CFS on the horizon, things are looking up thanks to recent findings and a substantial increase in the amount of high-quality research. The field still needs much more funding. Do you remember the buzz around rituximab? Oncologists Dr Fluge […]

Nine Journeys In One Day Expose ‘Sham’ Of National Express ‘Accessible’ Coaches

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  By John Pring in Disability News Service.   A disabled campaigner who took nine journeys on the same day to check the accessibility of the services provided by the UK’s largest coach operator experienced signifcant problems on all but one of them. Wheelchair-user Doug Paulley had booked assistance in advance for services between Leeds and Bradford […]

Mitochondria Play An Unexpected Role In Killing Bacteria

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By KATARINA ZIMMER, in The Scientist.   EDITOR’S CHOICE IN CELL & MOLECULAR BIOLOGY The paper B.H. Abuaita et al., “Mitochondria-derived vesicles deliver antimicrobial reactive oxygen species to control phagosome-localized Staphylococcus aureus,” Cell Host Microbe, 24:625–36, 2018. According to biology textbooks, a macrophage engulfs a bacterium, internalizes it in a toxin-filled vesicle called a phagosome, then shuttles the […]

Perceptions Of Chronic Fatigue Syndrome In The Emergency Department

Livingston HealthCare Orthopedic Department

  From Georgetown University Medical Center.   WASHINGTON (January 10, 2019) — Findings from a novel online questionnaire of people with chronic fatigue syndrome (CFS) who rated their perceptions of care in a hospital’s emergency department suggest the majority of these patients do not receive proper care, say researchers from Georgetown University Medical Center. The study, […]

The NIH Is Thwarting Research On A Poorly Understood Yet Serious Condition

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      By JENNIFER SPOTILA in statnews.com.   When I first developed myalgic encephalomyelitis in 1994, I had no idea that I would be just as sick 25 years later, or that there would still be limited scientific understanding of the disease and no effective treatments. Nor did I imagine that my career as a lawyer was over, and […]

Changing The Narrative #1: Exploring A New Approach To Strategic Communications In The ME Community

Valerie Eliot-Smith

    By Valerie Eliot Smith in valarieeliotsmith.com.   The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.  IntroductionI strted writing this blog in 2012. For several years since then, I have kept starting drafts on a particular topic, only to then abandon them because the subject-matter is complex […]

Sunlight Offers Surprise Benefit — It Energizes Infection Fighting T Cells

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    From Science Magazine.   Sunlight allows us to make vitamin D, credited with healthier living, but a surprise research finding could reveal another powerful benefit of getting some sun. Georgetown University Medical Center researchers have found that sunlight, through a mechanism separate than vitamin D production, energizes T cells that play a central […]

Riddle Of The Quiet Killer

Australia

  From The Sydney Morning Herald. Alison Hunter used to say she had lemonade in her legs and “shimlers” in her face. Still in primary school when she first became ill, those were the words she chose to describe the bizarre and frightening sensations that afflicted her. Vocabulary was still an issue when Alison died. […]

Trial By Error: My Norwegian Interview

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    By David Tuller, DrPH In addition to giving a couple of talks in Norway, I also answered some questions from Trude Schei, assistant Secretary General of the Norwegian ME Association. I doubt I said anything I haven’t stated many times before. However, members of the GET/CBT ideological brigades–in Norway and elsewhere–continue to maintain […]

18 Things I Learned In 2018

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    From the Life Of Pippa blog.   Although I’m not a particularly superstitious person, there’s always been something about the number 18 in my family. It’s when all the birthdays and anniversaries and life events seem to fall, it’s the addresses we live at, and it always seems to be an intrinsically lucky […]

Opinion: ‘Nobody Should Have To Live Like This – I Need More Care To Meet My Basic Needs’

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  By Corina Duyn in the journal.ie.   I have been ill with Myalgic Encephalomyelitis (ME) for 20 years. But it is only in the last year, and especially in the past six months that my most basic needs are not being met – at a time when my illness has become more severe and […]

Study Shows That Red Blood Cells Are Stiffer In People With ME

Blood Cells

  By Marilyn Simon-Gersuk in #ME Action. Researchers have published a paper that shows various measures of deformability in the red blood cells of people with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) indicating that they are significantly stiffer in people with ME/CFS than those from healthy controls. The observations suggest that red blood cell transport through microcapillaries may […]

ME Patients Face UK Ban On Donating Blood

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An old story, but worth repeating for those who believe ME is all in our minds. By Michelle Roberts in BBC News. Patients with ME will no longer be able to donate blood in the UK under new safety guidelines. Officials say the ban, starting on 1 November, is designed to protect the health of […]

4 Essential Limitations To Set When You’re Chronically Ill

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By Tony Bernhard J.D. in Psychology Today? For many years after I became chronically ill, I was in denial about the need to set limitations in order to keep my symptoms as manageable as possible. I refused to believe that I might not recover my health. I thought: “You get sick; you get better. It’s as […]

11 Hidden Realities (And 4 Hidden Gifts) Of Myalgic Encephalomyelitis

Mighty

    By Lisa Alloto in The Mighty. You can read quite a bit on the internet about the symptoms of myalgic encephalomyelitis. But there’s so much more beyond the clinical terms and symptom lists. Here are just a few of the hidden realities, along with a few hidden tricks! 1. You will likely grieve, and grieve […]

Where Is Bros Star Craig Logan now ? – (ME Story)

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    By Tom Eames in Smooth.   Craig Logan was one third of the biggest boyband of the late 1980s, Bros. But he soon quit the band, leaving Matt and Luke Goss as the sole members. But what has he been up to since? Craig began his career as a bassist in the pop band Bros. His nickname […]

Red Blood Cell Deformability Is Diminished In Patients With Chronic Fatigue Syndrome

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    By Authors: Saha, K. Amit et al in IOS Press Library.   BACKGROUND: Myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a poorly understood disease. Amongst others symptoms, the disease is associated with profound fatigue, cognitive dysfunction, sleep abnormalities, and other symptoms that are made worse by physical or mental exertion. While the etiology of the disease is […]

Dear Bug… I Don’t Survive at Being An Adrenaline Junkie

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  By Jessica Taylor-Bearman.   Dear Bug… I Don’t Survive at Being an Adrenaline Junkie It’s interesting when you learn things about yourself that have probably always been there but I’d not even noticed. This week I’ve been in London, well for four days – a mini week! I really wanted to attend The Author School and […]

My Wife Isn’t Tired

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  By Paul James.   I’m not writing this for me, I’m not writing this for Amy my wife either, today I was made aware of a lady who suffers not only from ME but also from her family’s disbelief and ignorance – so this is for her.   I need however, to start with […]

Trial By Error: “Talk Is Cheap,” Patients Tell NIH

David Tuller

    By David Tuller, DrPH. Earlier this month, NIH director Francis Collins and other agency officials held a meeting with five representatives from #MEAction. According to the group’s post about the meeting, the goal was “to discuss accelerating research in order to more rapidly provide diagnostics and treatments to people with ME.” Specifically, #MEAction urged […]

Ten Ways To Prove That Exercising Will Not Cure Chronic Fatigue Syndrome (ME/CFS)

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By Cort Johnson in Health Rising.   Your family, friends and even your doctor may, probably will at some point, prod you to get moving.  They think that if you can just get on your feet again and start exercising, you’ll be so much better. It’s irritating to hear and just reinforces how isolated you […]

Surviving, (Hiding), And Thriving With Cognitive Impairments

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  From the Chronic Illness: Realistic Optimism Blg y Lisa Alloto.   As the years have gone by with Myalgic Encephalomyelitis (ME), the cognitive impairments have grown.  My brain is slower to process information and conversations.  For example, it takes longer to find the right word, to remember someone’s name, and quite often to even to […]

Filling “The Landscape Of Unmet Needs” In ME/CFS and FM: The Bateman Horne Center Pt 1

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    By Cort Johnson in Health Rising.   This is the first of a couple of blogs that will celebrate visionaries within the ME/CFS/FM communities who took action to make their visions real. Dr. Bateman was doing yeoman’s work serving the ME/CFS/FM community in her medical practice in Salt Lake City, Utah.  She could […]

Not All Disabilities Are Visible……..

Invisible Illness

One of my favourite Christmas presents this year, a sticker for the car from my wife and daughter…… There is a need for a Government backed, nationwide TV and Radio educational campaign to raise awareness of Invisible Illnesses and Disabilities.    

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