Fibromyalgia

Sorry, Netflix: We Don’t Need Another Freak Show

Netflix

By Frances Ryan in The Guardian.   Afflicted has enraged its participants, but it wouldn’t be the first TV show to use people with disabilities as entertainment fodder. An open letter to Netflix was published on Tuesday criticising its recent docu-series, Afflicted, which chronicles the lives of seven people with chronic illnesses. The letter highlighted what it called the […]

The Case For IVIG Treatment In Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia, Small Fiber Neuropathy, And POTS : IVIG#3

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  By Cort Johnson in Health Rising.   “The bottom line is that we should rethink this whole area and encourage proper clinical trials.” Dr. Nancy Klimas This article is the last of a three-part series on IVIG which came out of my attending the 2018 Dysautonomia Conference in Nashville, Tennessee. An IVIG Chronic Fatigue […]

Ibiza: What It’s Like Raving In A Wheelchair On The Party Island

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  By Alex Taylor in BBC News. A year ago, I was told I would have to pay double to get into a nightclub in Ibiza. Why? I have cerebral palsy, a condition which affects mobility, and rely on a carer to help me on nights out – who also needed to pay the entry […]

The Reality Of Chronic Fatigue And Exhaustion

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    By Caz in The Mighty.   What exhaustion and fatigue are not: 1. Laziness. It’s not simply not “wanting” to do something or not being bothered. 2. A temporary state you can simply overcome with a little positive thinking or an energy drink. 3. Cured by sleep. Being “sleep tired” and being exhausted are not mutually exclusive but […]

The Other Side Of The Opioid Epidemic: Denying Treatment To People With Chronic Pain

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    By Kate Nicholson in The Mighty.   When I went into the office one Saturday afternoon in August 1994, I planned to spend a few hours finishing a brief that was due in federal court Monday morning. At the time, I was a civil rights attorney for the justice department. After 30 minutes […]

Stickman Communications

Stickman

  About Us   Stickman Communications’ Mission: To create understanding and acceptance of disability as a different normal, through producing products which enable individuals to create the accesibility they need. Stickman Communications products All Stickman Communiations products feature the work of stickman cartoonist Hannah Ensor. Hannah’s unique approach to communicating about disability and medical conditions […]

Minister Snubs DPOs – And ‘Breaches UN Convention’ – By Refusing Meeting

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By John Pring in Disability News Service.   The minister for disabled people is refusing to meet a coalition of disabled people’s organisations, in an apparent breach of the UN disability convention. The coalition wrote to Sarah Newton yesterday (Wednesday) to express its “deep disappointment and concern” about her refusal to meet them to discuss […]

The UK’s General Medical Council Just Threw 250,000 Disabled People Under A Bus

General Medical Council

By Steve Topple in The Canary.   A response from the General Medical Council (GMC) to hundreds of complaints has effectively abandoned 250,000 disabled people. It also demonstrates the GMC’s contempt for the patients it’s supposed to protect. Moreover, in dismissing patient’s concerns, it’s whitewashed what one MP believes could be the “biggest medical scandal of the 21st century”. […]

Why Blackpool Is One Of The UK’s Great Accessible Holiday Destinations

Blackpool

  From Euan’s Guide.   The seaside resort is home to the country’s most-loved Changing Places toilet inside a waterpark that goes above and beyond to welcome disabled visitors, so it’s no wonder that Blackpool sits high on the list of must-visit accessible UK destinations. Add to that a wheelchair accessible tram whizzing back and […]

Please Don’t Confuse My Chronic Pain With ‘Low Pain Tolerance’

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By Alexandra Kaye in The Mighty.   “Pain tolerance” and “pain threshold” are phrases used to describe how much pain a person can handle, but they don’t actually mean the same thing. Pain tolerance is how much pain you can handle while still functioning (for me, this means how much pain I can handle without taking medication). […]

DWP Figures Provide Fresh Evidence To Explain PIP Claim Rejections

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  By John Pring in Disability News Service.   New figures show that Department for Work and Pensions (DWP) civil servants are questioning only a tiny proportion of the benefit assessment reports written by discredited government contractors Atos and Capita. Campaigners have been trying for months to secure evidence that would explain why such a […]

Why The Netflix Docuseries ‘Afflicted’ Is Harmful For The Chronic Illness Community

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  By Paige Wyant in The Mighty.   “Afflicted,” a new Netflix docuseries that premiered on August 10, follows seven people who live with chronic illnesses. I originally thought “Afflicted” was going to shed light on less-known illnesses and elevate the stories and voices of those who struggle with them, but the docuseries did the opposite. Instead […]

Martin Lewis: A Drugs Bust – Stop Letting Big Pharmaceuticals Rip You Off !

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  By Martin Lewis in MoneySavingExpert.com.   Harry Potter’s got nowt on the pharmaceutical industry. It’s full of real wizards – both those who make drugs that help, and the marketers who have a raft of tricks to persuade us there’s hidden magic in their brands. Drug companies spend millions promoting ‘only-use-the-name-you-know’ messages… but it’s […]

“Sticky Blood” – Antiphospholipid Syndrome, POTS, Chronic Fatigue Syndrome And Fibromyalgia – The Dysautonomia Conference #4

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  By Cort Johnson in Health Rising.   This blog is part IV in a series of blogs covering the issues presented at the 2018 Dysautonomia International Conference in Nashville, Tennessee. As if we needed another syndrome.  Chronic fatigue syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS), fibromyalgia (syndrome), irritable bowel syndrome (IBS) are old-timers in the ME/CFS/FM world. In the last […]

The RCCX Hypothesis: Could It Help Explain Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia And Other Diseases ?

Genetics

  By Remy in Health Rising.   The RCCX hypothesis blog by Remy is the third in a series of blogs by Health Rising which highlight hypotheses produced by health care professionals which attempt to shed a new light on the chronic fatigue syndrome / fibromyalgia spectrum of diseases. Chronic illness is exploding in modern […]

5 Mistaken Assumptions About The Chronically Ill

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  By  Toni Bernhard J.D. in Psychology Today.   The chronically ill carry the extra burden of frequently being misunderstood. I hope the day will come when chronic illness (which includes chronic pain) is recognized as a normal—and inevitable—part of the human life cycle. I also hope the day will come when people understand that chronic illness can […]

When Gaining Weight Because Of Chronic Illness Is A Common Story

Chronic

  By Lorna Fenech in The Mighty.   Even before I was diagnosed with myalgic encephalomyelitis (ME), I always found it hard to love myself and my body. Low self-esteem and body dysmorphia contributed to a generally negative perception of myself, particularly my weight. Over the years I tried to manage this by staying healthy. I have […]

8 Ways You Can Support Your Friends With ME And Fibromyalgia

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  By Victoria Fernando in The Mighty.   I have myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and I am writing this post in honor of International ME/CFS and Fibromyalgia Awareness Day, this Saturday, May 12th, 2018. Kudos to all those surviving and doing their best whilst living with these diseases, and to the caregivers and loved ones who love and […]

Twitter Unleashes Fury Over Medical Exam Question – And For Good Reason

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  By Kayleigh Dray in Stylist.   Karina Wagenpfeil, a writer and scientist, first brought the issue to the internet’s attention when she tweeted photos of a problematic practice question for a medical licensing exam. Grey’s Anatomy fans will no doubt recall the episode where Miranda Bailey (Chandra Wilson) – a talented and adept surgeon, with a wealth […]

Why I Experience ‘Flare Fear’ On My Good And Bad Health Days

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  By Samantha Taylor in The Mighty.   The Fear. The anxious, stomach churning, paranoia riddled feeling deep inside when you feel that something is about to go wrong. You feel sick, you’re sweating and there’s an impending sense of doom. You’ve felt it right? I think we all have at some point. I certainly […]

What I Wish People Knew About My Illness, Even When I Look Fine

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  By Deema H in The Mighty.   I haven’t quite decided what I think is worse: living with a chronic illness or living with an invisible chronic illness. I’ve come to find people don’t realize it’s offensive, not a compliment, to say, “But you don’t look sick!” Let me tell you something: Looking healthy doesn’t make […]

Blue Badge Parking Permits To Cover ‘Hidden Disabilities’ In England

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  From BBC News.   Blue badge parking permits are to be made available for people in England with “hidden disabilities” such as autism or mental health problems. The Department for Transport said people with non-physical disabilities would have an equal right to free parking from next year. Currently the rules do not explicitly exclude […]

An Honest Doctor On Treating Chronic Fatigue Syndrome (ME/CFS) And Fibromyalgia (FM)

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  By Cort Johnson in Health Rising.   Ari Whitten is a Scottsdale, Arizona naturopath who runs the Energy Blueprint website. He’s done an amazing number of podcasts with alternative health practitioners. If you’re interested in alternative health, his website is a good resource. I find that Whitten asks good questions.His May 28th interview with JE Williams, […]

LDN Chosen As First Choice For Treating Fibromyalgia And CFS/ME Pain

LDN

    From LDN Science.   Two-day summit of specialists in fibromyalgia and chronic fatigue syndrome concludes: LDN is the top choice for treatment of chronic pain in these patients. In a recent story, Medscape News Reporter Miriam E. Tucker shares new insights into LDN’s use for treatment of chronic pain conditions. University of Alabama’s […]

What I Wish People Knew About My Illness, Even When I Look Fine

Chronic

  By Deema H in The Mighty.   I haven’t quite decided what I think is worse: living with a chronic illness or living with an invisible chronic illness. I’ve come to find people don’t realize it’s offensive, not a compliment, to say, “But you don’t look sick!” Let me tell you something: Looking healthy doesn’t make […]

17 Tips From 17 Years Sick

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  By Toni Bernhard J.D.in Psychology Today.   When I began to write for Psychology Today over seven years ago, one of the first articles I posted was called “10 Tips from 10 Years Sick.” It’s seven years later. A lot has happened in my life, but there’s been one constant: chronic illness, including chronic pain. Since 10 + […]

Is It Wise To Have A Pet When You’re Chronically Ill ?

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  By Marianne Davis in The Mighty.   There is increasingly strong evidence that sharing our life with a pet has important health benefits. Anybody who has one or more will tell you that their dog, cat, bird, rabbit or any other creature is the apple of their eye. This is especially true for those […]

Tanyalee Davis: Disabled Comedian ‘Amazed’ By Support

Tanyalee Davis

From BBC News.   A comedian who criticised a train firm after she was “humiliated” for using a disabled space for her mobility scooter has thanked the public for their support. Tanyalee Davis, who lives in Norwich, said a Great Western Railway (GWR) service guard threatened to call the police if she did not leave […]

MPs Raise Concerns With McVey Over ‘Stress And Poverty’ Caused By WRAG Cuts

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  By John Pring in Disability News Service. Cross-party MPs have raised a series of concerns with work and pensions secretary Esther McVey about the government’s treatment of disabled people on out-of-work benefits. Members of the Commons work and pensions select committee were questioning McVey (pictured) more than a year after her government introduced cuts of nearly […]

Mother Of Epileptic Boy Becomes First Person To Legally Enter UK With Cannabis Oil

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  By Benjamin Butterworth in INews.   The mother of a six-year-old epileptic boy has legally brought medicinal cannabis oil through the border in the first known successful attempt since the Government paved the way for reforms. Hannah Deacon was allowed to pass through London City Airport on Tuesday carrying a five-month supply of the […]

PIP Announcement ‘Shows Replacing DLA Was Waste Of Time And Money’

DWP Caxton House

  From Disabled Go News.   The government’s decision to stop regular benefit reassessments for some people with “the most severe, lifelong conditions” shows that replacing disability living allowance (DLA) with personal independence payment (PIP) was a waste of time and money, it has been claimed. Sarah Newton, the minister for disabled people, confirmed this […]

Tips Suggested By Members Of Our Online Community About Work

Scope

  From Scope.   Negotiating the world of work can seem like a difficult challenge if you’re a disabled person. Fortunately there are many resources that you can draw on to make things a little easier, whether you’re currently experiencing difficulties at work or you’re looking for a job. Read on for our top tips […]

What I Wish Others Knew About Living With Chronic Pain

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  By Emily Murray in The Mighty.   You open your eyes and look at the clock. It’s 4:45 a.m. You only have about an hour left in your bed, your safe haven. Sure, maybe you could use a little more sleep. Most people do need that. But lack of sleep isn’t what drives you to hit the […]

Chronic Fatigue Syndrome – It’s Worse Than Multiple Sclerosis – And Fibromyalgia Is No Walk In The Park Either

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  By Cort Johnson in Health Rising.   Multiple sclerosis (MS) is a dreaded disease. About ten years into having chronic fatigue syndrome (ME/CFS), I still remember being tested for it and how thankful I was that I didn’t have it. MS does things to people that ME/CFS doesn’t. For one thing, it kills more […]

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