ME Support and Awareness in York

Brain Studies Show Chronic Fatigue Syndrome And Gulf War Illness Are Distinct Conditions

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    By Karen Teber in Georgetown University Medical Center News.   Gulf War Illness (GWI) and chronic fatigue syndrome (CFS) share symptoms of disabling fatigue, pain, systemic hyperalgesia (tenderness), negative emotion, sleep and cognitive dysfunction that are made worse after mild exertion (postexertional malaise). Now, neuroscientists at Georgetown University Medical Center have evidence, derived […]

7 Ways To Survive A Flare When You’re Chronically Ill

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    By Toni Bernhard J.D. in Turning Straw Into Gold.   Part of living day-to-day with chronic illness (which includes chronic pain) is learning to cope with a flare in symptoms. Even though my parade of symptoms tend to be relentlessly the same, at times they flare and can even feel out of control. Here are […]

The Best Analogy To Explain ‘Energy Debt’ With Chronic Illness

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    By Teresa Ledwith in The Mighty.   The other day I was struggling, as many of us with chronic illness do, to explain myself to a friend. As usual, I had to give up. I can’t explain to her why it’s not easy for me to drive in and out of my nearest city (an […]

Four In Five Disabled People Feel Anxious About Using Public Transport, Says Study

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  By Cathy Adams in The Independent.   Four in five disabled people have felt anxious about using public transport, according to a wide-ranging new study about disability and travel, while three in five have felt scared. Research from equality charity Scope shows that the majority of disabled people face problems when using public transport, with […]

ME And Me: Making Films About Disability To Raise Awareness

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      From Disability Horizons.   Disabled writer and actor Thom Jackson-Wood, who has ME, talks to Disability Horizons about his films, Awaken and The Black Box, both of which are about disability. Written after frustrations at disabled people being misrepresented on TV, he hopes the films will raise awareness of different disabilities, and […]

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 […]

Can mHealth Tools, Smart Clothing Help In Chronic Fatigue Research ?

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    By Eric Wicklund in mHealth Intelligence.   mHealth researchers in Canada are launching a five-year project to gather information through wearables and smart clothing to help people living with chronic fatigue syndrome. The Canadian Institutes of Health Research today unveiled the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis – ICANCME – Research Network. The program will use […]

Fear Of The Unknown – Leaving My Protective Cocoon

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  By Jo Moss in A Journey Through The Fog.   I have a hospital appointment coming up. It’s for a painless, straightforward heart scan (Echocardiogram) as a follow-up to my recent heart problems. Now this would be a simple activity for a healthy, able-bodied person but for someone with a disabling chronic illness like […]

The Suffering Of One Of Us Is The Story Of All Of Us: Pt I – REELing

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    By Kyle McNease in Health Rising.    (Kyle’s story of going from abundant health to a very severe case of ME/CFS, and then, when all looked bleakest, back to relative health, almost defies description. The length of his narrative, the elegance and directness of his writing, even the difficulty it sometimes presents, makes it unique […]

Marcel Robert’s View Is A Darkened Room In A Rest Home: Life With Chronic Illness ME

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    By Natalie Akoorie in M.E. Awareness NZ.   Marcel Robert lives in a rest home. He is 31 years old. Natalie Akoorie finds out what it’s like to be unable to live life because of an illness and why funding for research is so important. In a darkened room at Oxford Court Lifecare in […]

Fake Drugs That Could Kill Are On The Rise In Western Countries – Here’s Why

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    By Susanne Lundin and Rui Liu in The Conversation.   Fake medicines – illegal and substandard pharmaceuticals – have until now largely been a problem in low and middle-income countries. Ranging from lifestyle products to lifesaving medicines, such products are now also on the rise in the Western world. The spread is concerning, […]

‘I’ve Got Relatives With ME/CFS’ – Dr Richard Medlicott’s Reason Behind Fundraising Ride

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    By: Natalie Akoorie in New Zealand Herald.   Richard Medlicott is not your usual GP. The Wellington doctor, and former medical director of the New Zealand College of General Practitioners, is raising money for a chronic illness that many in the medical profession know little about. Medlicott has set up a Givealittle page for his […]

My Disabilities Are Invisible. I Shouldn’t Have To Prove Them To Strangers

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    By Isabelle Jani-Friend in The Guardian.   I was recently on a packed Central line train into London. Luckily, I managed to take the last priority disabled seat. My osteoporosis and the fatigue I experience meant it would be hard for me to stand for the 40-minute journey to Oxford Circus. I felt a sense […]

CPS Concern Over Huge Drop In Police Disability Hate Crime Cases

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    By John Pring in Disability News Service. The Crown Prosecution Service has joined a leading disabled campaigner in raising concerns about a huge fall in the number of disability hate crime cases passed by police forces to prosecutors. The Crown Prosecution Service (CPS) annual hate crime report for 2018-19 revealed this week that […]

A Self-Help Guide To Managing Myalgic Encephalomyelitis

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    From ME Support.   Introduction I have had Myalgic Encephalomyelitis of varying degrees for the majority of my life, including periods of being housebound and bedridden. Conventional medicine offers us few options, and we’re faced with conflicting advice on living with M.E.; therefore, it’s difficult to know which way to turn. One thing […]

Essentials For Getting Out And About As A Wheelchair User

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    By Soph in Mummying and M.E.   Out on a shopping trip recently with a good friend, she suggested I put together a list of the things I’ve learnt to be essential when getting out and about. You see I’ve always been fiercely independent, not thinking twice about the ability to leave the […]

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 […]

Trial By Error: How Bristol Investigators Avoided Ethical Review (Reprise)

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    By David Tuller, DrPH Last November 12, I published a post called “How Bristol Investigators Avoided Ethical Review.” That post addressed the series of eleven studies conducted by Bristol investigators and exempted from ethical review on questionable grounds. The lead investigator of these studies was Professor Esther Crawley, Bristol’s methodologically challenged pediatrician, whose […]

General Practice Is Disintegrating Due To Its Serial Reforms

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        By David Zigmond in BMJ Opinion. Why is it so difficult to get continuity of care, or even an appointment, with your GP? And why is the GP workforce now so unhappy and depleted? David Zigmond offers some explanations beyond those of increasing demands and how we finance them. Recently both the BBC and several […]

How To Tell If Your Exhaustion Could Actually Be A Symptom Of Chronic Fatigue Syndrome

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      By Hattie Gladwell in the Metro. Many of us experience tiredness – but when are your symptoms actually a sign of Chronic Fatigue Syndrome? It’s normal to get tired from daily activities, or because you’re not getting enough sleep. Having a stressful day, working too many hours or having a strenuous workout […]

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

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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 took […]

What Does ‘Listen To Your Body’ Mean When You Have M.E ?

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  From ME Action.   So I’ve been doing this fundraiser, where I try to get 1000 body weight reps done in half an hour every day to raise money for #meaction. It’s been a test for me in listening to my body, and knowing when to slow down, rest, or even skip a day. And it […]

7 Tips For Better Pacing

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      By Julie Holliday in Pro Health. With an energy-limiting chronic illness like ME/CFS, a key to being as well as possible is to make sure you don’t use more energy than you readily have available to you (sometimes called your “energy envelope”). When you push past your limits, your cells have to […]

The Exercise Intolerance In ME/CFS – Is it Unique ?

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By Cort Johnson in Health Rising. Just about everyone with chronic fatigue syndrome (ME/CFS) has the sense that the disease has an astonishing ability to fall through the cracks. It’s a major disease that affects around a million people in the U.S. yet gets very little funding. It has no home at the NIH; it […]

The Mystery And Life-Wrecking Result Of Chronic Fatigue Syndrome

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    By Dr Cathy Stephenson in Stuff.   It’s Friday and I feel tired. Its been a busy week of work and I’m looking ahead to a weekend of cooking, cheering on the kids at a variety of sports games and a bit of socialising…..as well as the usual mountain of washing, cleaning and gardening that I […]

URGENT RECALL Two New Alerts Over Common Heartburn Drug Recalled Over Cancer Fears – Including Boots And Morrison Own-Brands

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    By Lizzie Parry in The Sun.   COMMON heartburn drugs sold over-the-counter have been urgently recalled – over fears they could contain cancer-causing chemicals. It’s the third major recall of its kind, six types of prescription-only Zantac were recalled earlier this month. Now, six more products have been added to the list, the Medicines and […]

Gut Microbes Can Be Picky Eaters – Here’s Why It Matters

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    By Tim Spector in The Conversation.   We choose our food for a variety of reasons, including personal preference, availability, cost and healthiness. But we should also take our gut microbes’ preferences into account, a new study published in Cell suggests. The bacteria in our guts, collectively known as the microbiota or microbiome, live on […]

One Day He Was ‘Gifted’, The Next He Couldn’t String Together A Sentence

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    By Carrol Baker in kidspot.   Once bright and energetic 12-year-old Ethan struggled to get out of bed in the morning. But, as his mum Shelley says, that was just the beginning. At first, doctors prescribed bed rest. They thought it was a virus and they said you can’t really do anything for a virus, he’ll just […]

Don’t Be Blind To Invisible Illnesses – 5 Ways To Support Employees Suffering In Silence

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    By Dr Ellie Cannon in fenews.co.uk.   According to Government statistics, there is an estimated 3.8 million people with a disability in employment. As this figure is pretty high, it’s likely that many business owners employ someone who has a disability, without even realising as 96% of illnesses are invisible.  In an ideal world, employees […]

Medical Council Agrees New Guidelines Are Needed

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    by Sasha Nimmo in ME Australia.  National Health and Medical Research Council’s Chief Executive Officer, Prof Anne Kelso, today released her response the ME and CFS advisory committee’s report. Prof Kelso has decided that the NHMRC should develop clinical guidance on ME/CFS. This is a major decision as the current guidelines were condemned […]

Beneath The Surface, Part 2

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    By Naomi Whittingham in A Life Hidden.   In Part 1, I highlighted some positive aspects of the BACME guidelines, as well as giving an overview of my concerns. Here, in Part 2, I look more closely at the guidelines’ focus on deconditioning and graded exercise therapy (GET), as well as their failure to address […]

New Research Network Brings Fresh Energy To Fight Against ME

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  By Ryan O’Byrne of University of Alberta.   The first research network in Canada to focus on chronic fatigue syndrome eager to attract new research into the poorly understood disease. Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), is not a new disease, but it is one of the least understood. There […]

Why We Shouldn’t Test Our Physical Limits To Make Others Feel More Comfortable

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  By Heidi in The Mighty.   Whenever I am scrolling through chronic illness forums online, I usually come across posts about mobility aids. Having postural orthostatic tachycardia syndrome, or POTS, I understand what it feels like to use mobility aids in public without an obvious physical disability. “But you don’t look sick.” “Are you […]

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