Fibromyalgia

Scope Accused Of ‘Exploitation’ After Seeking Disabled Writer To Work For Free

Writing

    By John Pring in Disability News Service.   A disability charity has been accused of “exploitative” and “disgraceful” behaviour after asking disabled journalists to write an article for its website without payment. The charity Scope sent out a message on social media this week seeking a “disability blogger” who could write an article […]

Mayo Clinic Research Discovers A Molecular Switch For Repairing Central Nervous System Disorders

Research

  From The Mayo Clinic.   ROCHESTER, Minn. — A molecular switch has the ability to turn on a substance in animals that repairs neurological damage in disorders such as multiple sclerosis (MS), Mayo Clinic researchers discovered. The early research in animal models could advance an already approved Food and Drug Administration therapy and also could lead to […]

Stop Assuming I’m Not Disabled Just Because I Don’t “Look Disabled”

Disability Parking

  By Rachel Carrington in Rooted in Rights.   I park my car in a parking space reserved for those with disabilities. My door is barely open before I’m confronted by a woman who demands to see my handicap parking placard. Her mother is disabled, and she needs the space. I point her toward my […]

New Government Provides Details On Five Disability Policy Pledges

Parliament

  By John Pring in Disability News Service.   The new Conservative government has described how it plans to fulfil the five major disability policy pledges it included in its general election manifesto. The details were included in a briefing document published alongside last month’s Queen’s speech by prime minister Boris Johnson. They cover social care, a […]

A Blue Badge And Invisible ME

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    Gone from being life and soul Health gone down a huge black hole Rarely getting out too far Too much pain is the bar A blue badge now has rescued me When strength allows, it sets me free It gets me to a needed door Which was out of my aching reach before […]

Book Exposes ‘Horrifying’ Levels Of Abuse Faced By Disabled People On Public Transport

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  By John Pring in Disability News Service.   A new book by a disabled researcher has detailed the “horrifying” levels of disability hate crime that take place every day on public transport across the UK. David Wilkin says the results of his research are “sometimes startling and almost always distressing” and illustrate the “ongoing […]

5 Tips For Making Your Christmas Party Accessible

Christmas

  By Kerry Thompson in AccessAble.   Disability blogger and campaigner Kerry Thompson, who has Muscular Dystrophy and uses a wheelchair, gives us her top 5 tips for making Christmas parties accessible. December is here! The shops are filled with Christmas Trees and decorations, the bars and restaurants are advertising booking Christmas parties, it’s a […]

Lewisham Commission Hopes To Put Disabled People At Heart Of Decision-Making

disability

  By John Pring in Disability News Service.   A local authority has become the second in London to set up an independent, user-led commission to investigate the barriers faced by disabled residents. Lewisham Disabled People’s Commission (LDPC) will be led by disabled people and will examine organisational, attitudinal and physical barriers faced by disabled […]

Tips On How To Survive The Festive Season

Christmas Tree

  By Jo Moss in A Journey Through The Fog.   Christmas can be a particularly hard time of year for people living with chronic ill-health. It can be a mental and physical strain, filled with potential pitfalls. I have to admit I’ve never been a Christmassy person. We (my family) didn’t celebrate Christmas when […]

Resting When Tired Isn’t Lazy – It’s Self Care

Resting

    By Jo Moss in A Journey Through The Fog.   Since my heart procedure 2 weeks ago, it feels like I’ve done nothing but sleep. I know I should be thankful my poor, exhausted body is finally letting me rest, but I’m struggling with the notion that I’m just “being lazy” and the […]

What “Phantom Nasal Congestion” May Tell Us About ME/CFS And Fibromyalgia

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    By Cort Johnson in Health Rising.   When you have a systemic disease, any part of your body can provide a clue – even your nose. Over 15 years from 1998 to 2012, James Baraniuk, a longtime ME/CFS and GWI researcher at Georgetown University, became the first and thus far the last person […]

7 Ways To Tackle Low Self-Esteem With Chronic Fatigue Syndrome And Fibromyalgia

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  By Colleen Downey in The Mighty.   Self-esteem is generally described as the degree of regard or respect individuals have for themselves and is a subjective measure of worth that we place on our abilities and judgments; it is an understanding we create of our worth based on emotions and beliefs about how we […]

Sainsbury’s, I Don’t Need A Lanyard To Warn You About My Disability – You Need To Provide Better Training

Sainsburys

    By Liz Johnsin in The Independent.   It’s great that major brands are getting serious about inclusion, but initiatives should focus on taking away barriers, rather than forcing marginalised groups to mark out their difference. Sunflower season may be over but Sainsbury’s wants to see more in bloom this autumn following its latest announcement. On […]

General election 2019: What’s Pledged For Disability And Mental Health ?

Parliament

      By Damon Rose & Beth Rose in BBC News.   With 13 million disabled people in the country, plus their friends and family, the political parties have a huge community to court. Universal credit is still making headlines, while the main parties are divided on what to do with the social care […]

“Neither Dying, Nor Recovering”: Learning From ICUs To Solve ME/CFS And Fibromyalgia – A Synopsis

chronic-illness

    By Dominic Stanculescu in Health Rising.    From Dominic   I believe observations made in Intensive Care Units can further understanding of ME/CFS.   Indeed, following a severe injury or infection some ICU patients fail to begin recovery for unknown reasons. This condition, termed “chronic” or “prolonged critical illness,” is characterized by neuroendocrine dysfunctions perpetuated by cytokines and oxidative/nitrosative stress. Regardless of the initial injury or […]

Are You A Clumper Or Slider ? The ESR ME/CFS And Fibromyalgia Poll

Blood Cells

By Cort Johnson in Health Rising.   It’s the simplest of medical tests. The erythrocyte sedimentation rate (ESR or SED rate) test simply measures the rate at which the red blood cells in whole blood descend in a test tube over a period of one hour. This non-specific measure of inflammation works because, during an inflammatory process, […]

York Disability Forum

disability

  Today I’ll be attending a meeting to see if creating a York Disability Forum will be helpful in giving us more of a voice in the area.  I’ll report back on here as to how it goes. If you’re in York and want to let me know of any good, bad or indifferent stories on […]

Ask About My Disability If You’re Curious, But Don’t Patronise Me

Samantha Renke

    By Samantha Renke in the Metro.   As a disabled woman, I’ve sadly become somewhat immune to overt forms of aggression and discrimination. I almost expect the lift to be out of service whilst shopping. I also acknowledge that my work prospects are diminished in comparison to my non-disabled peers, and that it’s highly […]

‘They Think Disability Is Almost Worse Than Being Dead’

Disability Dice

By Kate Scotter in BBC News.   “I won’t let you make me feel bad for the things I cannot do, I am tired of being talked over by people like you.” To watch Tilly Moses perform her folk music on stage, there are no visual clues she’s disabled – although the message is there […]

Link Between Inflammation And Mental Sluggishness Shown In New Study

Brain Fog

From Science Daily.   Scientists at the University of Birmingham in collaboration with the University of Amsterdam have uncovered a possible explanation for the mental sluggishness that often accompanies illness. An estimated 12M UK citizens have a chronic medical condition, and many of them report severe mental fatigue that they characterize as ‘sluggishness’ or ‘brain […]

​GP Home Visits Under Threat

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    From Action For ME.   Action for M.E. has raised serious concerns with every Local Medical Committee (LMC) following the announcement of a motion at their conference by Kent LMC to stop home visits by GPs. LMCs are the independent bodies who work with the British Medical Association to shape policy. If successful, […]

My Typical Day As A Chronic Fatigue Blogger

Blog

  From the Mummying And Me Blog.   Want to know what a day in the life of a chronic fatigue blogger looks like? Here I will try to sum up what my days look like during the week. Why did I choose to write this article? When I’ve spoken to friends and family about […]

Getting At The Hurt In Chronic Pain

Chronic Pain

    By Cort Johnson in Health Rising.   Pain – A Surprisingly Complex Experience Pain seems pretty elementary – it hurts! When it really hurts, you want to throw yourself out of your skin. It’s actually not so simple. Pain is often described as a complex, “biopsychosocial phenomenon“. The International Association for the Study […]

Neuroendocrine Dysfunctions in Prolonged Critical Illness: Relevance for Chronic Fatigue Syndrome ME/CFS and Fibromyalgia Pt. I

research

    By Dominic Stanculescu in Health Rising.    Summary Prolonged or chronic critical illness – a term applied to patients that survive severe injury or infection, but fail to start recovering after a few days – is characterized by low levels of peripheral hormones (including T3, IGF-1, cortisol and testosterone). This pattern is increasingly recognized as a neuroendocrine dysfunction […]

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 […]

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

Invisible Illness

    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 […]

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

Invisible Illness

    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 […]

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

Disability

  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 […]

How Accessible Is The Beauty World To Those With Disabilities ?

accessibility

    By Amelia Abraham in Dazed Digital. DISABILITY CAMPAIGNER SAM RENKE, BEAUTY YOUTUBER KAITLYN DOBROW, AND THE CHARITY SCOPE SHARE THEIR THOUGHTS ON HOW THE INDUSTRY CAN DO BETTER For Sam Renke, who has osteogenesis imperfecta, also known as brittle bones disease, make-up is not a mask but a way to express herself. “Fashion and beauty […]

Fibromyalgia And Chronic Fatigue Syndrome: The Gap Widens

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  By Cort Johnson in Health Rising.   The similarities are striking: the symptoms, the shoddy research funding, the poor treatment from doctors, the gender imbalance and the stigma both still face. Both diseases still really exist on the fringes of medicine and medical research. Yet one disease is moving forward rapidly and the other […]

My Disabled Body Is Not A ‘Burden.’ Inaccessibility Is

Accessibility

      By Aryanna Falkner in Healthline. I discovered my love for literature and creative writing during my senior year of high school in Mr. C’s AP English class. It was the only class I could physically attend, and even then, I usually only made it once a week — sometimes less. I used […]

‘But You Don’t Look Sick’: Living With An Invisible Disability

Invisible Illness

    By Nicole Precel in The Sydney Morning Herald.   When Rebecca Young parks her car in a disabled parking spot she often feels the searing stares. Is she driving her grandparents’ car? Why does she have a disability sticker when she is aged in her 30s and appears to walk perfectly well? Ms […]

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