Myalgic Encephalomyelitis

Myalgic Encephalomyelitis

Governments ‘Overwhelmingly Failed’ To Protect Disability Rights During Pandemic

disability-rights

  By John Pring in Disability News Service. Governments around the world – including the UK’s – have “overwhelmingly failed” to protect disabled people’s rights in responding to the global pandemic, according to the results of a major international survey. This has had “dire consequences”, with thousands of avoidable and preventable deaths and other “serious […]

Illness-Related Fatigue: More Than Just Feeling Tired

Fatigue

  By Jennifer Crystal, MFA in Harvard Health Publishing.   A common refrain during the COVID-19 pandemic is, “I’m so tired.” After months of adjusted living and anxiety, people are understandably weary. Parents who haven’t had a break from their kids are worn out. Those trying to juggle working from home with homeschooling are stretched […]

Use Of Glucose For Energy Production In Muscle Cells From Patients With ME/CFS

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  By Cara Tomas, Joanna L Elson, Julia L Newton & Mark Walker in ME Research UK. Translational and Clinical Research Institute, Newcastle University, Newcastle upon Tyne, UK Scientific Reports, 2020 Oct 26; 10(1):18232 Key findings Muscle cells from people with ME/CFS are less able to use glucose as a fuel to produce energy This […]

A Never-Ending Immune Battle In ME/CFS ? The Regulatory T-cell / Herpesvirus Hypothesis

Blood Cells

By Cort Johnson in Simmaron Research. The failed Rituximab trial might seem like the death knell for autoimmunity in chronic fatigue syndrome (ME/CFS) but it’s not – not by a long shot. While the B-cells that Rituximab targeted are at the heart of much autoimmunity, T-cells can also cause autoimmune diseases. They also play a […]

A Little Health Reminder….

Doctor

  M.E. MOT Woke up today It’s not gone away This beast, it’s here for good Thought maybe a dream But a nightmare it seems I’d sleep through it all if I could As another day dawns There’s something more going on The pain’s a bit harder to stand It’s tougher to face, when it’s […]

Trial By Error: NICE’s Upcoming Draft Guidance On ME/CFS

David Tuller

    By David Tuller, DrPH *October is crowdfunding month at Berkeley. I conduct this project as a senior fellow in public health and journalism and the university’s Center for Global Public Health. If you would like to support the project, here’s the place: https://crowdfund.berkeley.edu/project/22602 The UK’s National Institute for Health and Care Excellence, or NICE, […]

Starving for Energy ? And The Immune Hole That Produced ME/CFS ?- The IACFS/ME Conference Reports Pt. II

Nervous System

By Cort Johnson in Health Rising.   The Immune Hole That Produced ME/CFS? (and who knows – maybe long-hauling as well) Somehow Lenny Jason got a hold of some recovery data from the 1918 flu! The data suggested that 20% of those affected may not have fully recovered, and fatigue was one of the most […]

Open Medicine Foundation Australia

Emerge

From Emerge Australia.   Established in October 2020, Open Medicine Foundation Australia (OMF Australia) is an Australian foundation set up to support biomedical research through the establishment of a new ME/CFS collaborative research centre in Australia. OMF Australia was founded by Emerge Australia in partnership with the Open Medicine Foundation, meaning that Australia is now […]

‘I Very Quickly Went Downhill’: Casey Stoner Opens Up On Chronic Fatigue Syndrome Battle

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  By Marc Churches from Australian Motor Sports.   Australian MotoGP legend Casey Stoner has opened up on his health issues as he continues to battle with Chronic Fatigue Syndrome (ME/CFS). The two-time MotoGP World Champion revealed last year that he had been diagnosed with the debilitating illness, which impacts on sleep, causes profound fatigue […]

BMJ Journal Retracts, Replaces Study On Chronic Fatigue In Children

research

From Retraction Watch.   A BMJ journal has retracted and replaced a paper on chronic fatigue in children after admitting that it misrepresented the nature of the research in the editing process. But the article has drawn scrutiny beyond merely the characterization of the analysis. The paper, “Cognitive–behavioural therapy combined with music therapy for chronic […]

I’m An Angry Disabled Woman. Here’s What I Want You To Know About Inaccessibility

Disability Dice

  By Sylvia Colt-Lacayo in Huffpost.   Recently, I was in the grocery store, minding my own business, when I heard, “Daddy, what’s wrong with her legs?” I looked to the right and saw a young boy with a now-embarrassed father, who quickly shushed his son. The dad made eye contact with me, trying to relay […]

Pandemic Recession Likely To Have ‘Disproportionate’ Impact On Disabled People

Disability

  By John Pring in Disability News Service. The recession associated with the pandemic is likely to be having a disproportionate impact on disabled employees, just as it did in the last recession, according to academics. They have examined the impact on disabled people during the recession of 2007 to 2009, and believe it is […]

I Have A Chronic Illness. I Know What The COVID-19 Long-Haulers Are Going Through

Lost

Nadine Sander-Green in The Globe and Mail. By the time I reached my early thirties, I had climbed one of the world’s highest volcanoes in Ecuador, won an arm-wrestling contest in Dawson City and trekked through the Himalayas for a month straight. All I had to do was ask my body to do something, and […]

A Fatigue Nucleus In Multiple Sclerosis… And ME/CFS And Fibromyalgia ?

Brain anatomy  - cross section

By Cort Johnson in Health Rising. Fatigue has been a mystery to the research world. Take multiple sclerosis (MS) – one of the most fatiguing diseases known. Fatigue is often one of the first symptoms that shows up in MS and it’s often the most troubling symptom MS patients experience, yet the fatigue in MS isn’t […]

Have We Been Thinking About Long-Haul Coronavirus All Wrong ?

Fatigue

    By Jamie Ducharme in Time. Afew years ago, Jaime Seltzer was helping coordinate research projects, grant applications and funding for a Stanford research group studying a condition called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Up to 2.5 million Americans, including Seltzer, have ME/CFS, and yet it felt like almost no one paid attention to […]

City Of York Council Ban Blue Badge Holders From City Centre

access-bluebadge

  There are approximately 49,058 cities, towns and villages in the UK. The disabled spend is around £212 billion per year. I wonder how many of these places have banned Blue Badge holders from their centres stopping them spending some of that money with struggling retailers? York has..

The Art & Science Of Pacing For M.E.

Pacing

  From M.E. Awareness New Zealand.   PACING “to avoid doing something too quickly or doing too much at one time, so that you have enough energy left to complete an activity” — PACING – MACMILLAN DICTIONARY This dictionary definition is a good starting point for understanding Pacing for ME. In a nutshell, Pacing for […]

Correcting Britain’s Vitamin D Deficiency Could Save Thousands Of Lives

Vitamin D

  From the Matt Ridley Online Blog.   A groundbreaking new study points to a cheap, safe, effective way of tackling Covid My article with MP David Davis, for the Telegraph: As we face six tough months of curfews, isolation and economic misery, with vaccines a distant hope, testing struggling to control the virus, and […]

NHMRC Grant Boosts ME/CFS Research

Funding

  By Deborah Marshall in Griffith News. The National Centre for Neuroimmunology and Emerging Diseases (NCNED) has been awarded $1.46 million in National Health and Medical Research Council funding for research into myalgic encephalomyelitis /chronic fatigue syndrome (ME/CFS). Part of Griffith University’s Menzies Health Institute Queensland , the centre’s researchers will investigate potential diagnostic tests as well as suitable […]

Trial By Error: NICE Draft Guidance On ME/CFS Coming Next Month

NICE logo

By David Tuller, DrPH *October is crowdfunding month at Berkeley. I conduct this project as a senior fellow in public health and journalism and the university’s Center for Global Public Health. If you would like to support the project, here’s the place: https://crowdfund.berkeley.edu/project/22602 The pandemic has played havoc with everything, including the timeline of the development […]

Councils Face Calls To Re-Think COVID Streetscape Changes

Disability Parking

  By TJM in Disability News Service.   Local authorities in England and Wales are facing calls to re-think the “streetscape” changes being made in response to COVID-19, amid concerns that the new street infrastructure is making parts of towns and cities inaccessible to many disabled people. Disabled people and their organisations have previously warned that many […]

Doctors With Long COVID

Blog-11-Signs-of-Adrenal-Exhaustion

  From BMA. Doctors who contracted COVID, and thought the symptoms would be over in weeks, tell Jennifer Trueland about their continuing pain, exhaustion and – sometimes – struggle to be believed. Richard Campbell had a demanding job as a consultant rheumatologist in a busy London trust at the start of the year. In his […]

ME & Education – Sian’s Story

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  From Physios for M.E. We’re delighted to present another young person’s story about how they are managing education alongside ME. Sian is 15 years old and has written this for us – thank you so much Sian! “One of the most important things I found I could do for myself, in terms of pacing […]

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