Fibromyalgia

Disabled People’s Organisations Draw Up 10-Year Plan To Tackle Inequality

By John Pring in Disability News Service. Disabled people’s organisations have sketched out a 10-year plan – at a cost of up to £18 million – to tackle the “deep and persistent” inequality, marginalisation and discrimination that is blighting the lives of millions of disabled people. A new report, built on research by eight regional […]

The York Access Hub

There’s a new website launching in York soon called the York Access Hub.  It will offer free advertising to York businesses including text, photos and a little information as to how accessible your business is to the disabled community. The idea is that it will be the one stop shop for visitors to York, either […]

The Importance Of Listening In Treating Invisible Illness And Long-Haul COVID-19

By Dorothy Wall MA in AMA Journal of Ethics. Abstract Primary and specialty care clinicians strive to base diagnoses and treatment on specific, measurable abnormalities. Yet those with invisible, controversial illnesses such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) often have symptoms not explained by standard laboratory values. For instance, one of the cardinal features of […]

Beyond Bones: The Relevance Of Variants Of Connective Tissue (Hypermobility) To Fibromyalgia, ME/CFS And Controversies Surrounding Diagnostic Classification: An Observational Study

By Jessica A Eccles et al in RCP Journals. ABSTRACT Background Fibromyalgia and myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) are poorly understood conditions with overlapping symptoms, fuelling debate as to whether they are manifestations of the same spectrum or separate entities. Both are associated with hypermobility, but this remains significantly undiagnosed, despite impact on quality […]

Chronically Ill And Disabled Workers Endure Regular Discrimination In UK Workplaces, Study Finds

By Natalie Morris in Metro. A new report has revealed the discrimination experienced by chronically ill and disabled people – who comprise 1 in 4 of the UK workforce. Around one in four people of working age are chronically ill or disabled, more than a third (38%) of these people say their health needs were […]

Promising New Low-Cost Treatment For CFS & Fibromyalgia

By: JACOB TEITELBAUM, MD in Vitality 101. A recent study by the Stanford University ME/CFS clinical practice is showing remarkable promise in treating chronic fatigue syndrome using the medication Abilify. At high doses, Abilify blocks the brain transmitter dopamine, and is used as an antipsychotic. But at extremely low doses it actually augments dopamine function. It’s reminiscent of […]

I Already Have A Job… Getting Through The Day

From Chronic Illness Inclusion. Our latest Report The ‘I already have a job…’ report, by Chronic Illness Inclusion and Leeds University Business School, sets out how government, employers and the benefits system are failing millions of people in the UK with Energy Limiting Chronic Illnesses – (ELCIs). Although one-in-three disabled people of working age experiences problems […]

The Ending Suffering Project for ME/CFS, Fibromyalgia, Long COVID, and Allied Disorders

By Cort Johnson in Health Rising. Something new has become possible with the long-COVID funding. Long sought answers to ME/CFS are not a pipe dream anymore but appear achievable. They will, however, take some time to emerge. Yet many people are suffering now, and some may not make it until those answers emerge. What a […]

Could High-Dose Thiamine (B-1) Help With ME/CFS, Fibromyalgia, And The Neurological Complications Of Ehlers-Danlos Syndrome ?

By Jeffrey Lubell in Health Rising.    Longtime readers of the Health Rising blog may remember an article that Cort wrote in 2013 about the promising results of a small study that found marked reductions in fatigue among three individuals with Fibromyalgia who took high doses of thiamine (Vitamin B-1). In the intervening years, several important studies on high-dose thiamine have been published, […]

How To Hide Your Disabled People: A Lesson From City Of York Council

By Elki in York Disability Rights Forum. Elki lives in York and relies on using her Blue Badge to be able to park near enough to the places she needs and wants to go. In this Member’s Voice post, Elki writes about what she sees as the dangers of reducing disability visibility in York. Disability […]

Are Stiffened Arteries Increasing Cardiovascular Risk In ME/CFS And Fibromyalgia ?

By Cort Johnson in Health Rising. Systrom, Scheibenbogen and others have has found evidence of microcirculatory problems in chronic fatigue syndrome (ME/CFS) and fibromyalgia, but what about the big blood vessels – the arteries?   These muscular, but flexible, tubes transport oxygenated blood under high pressure from the heart to the organs and muscles. They […]

Muscle Study Finds Key Differences In Fibromyalgia And Chronic Fatigue Syndrome (ME/CFS)

By Cort Johnson in Health Rising. The Netherlands and the U.K. have been the epicenter of biopsychosocial research (CBT/GET) into chronic fatigue syndrome (ME/CFS) for the past 20 years or so, but that is changing. In 2018, the Dutch Health Council asserted that “Scientific research on ME/CFS is needed to serve patients better”, and that […]

Dissecting The Nature Of Post-Exertional Malaise

By Megan Hartle, Lucinda Bateman and Suzanne D. Vernon in Taylor & Francis Online.    ABSTRACT Background Post-exertional malaise (PEM) is a defining characteristic of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) but there is insufficient research dissecting the nature of PEM from the patients’ perspective. Methods A PEM questionnaire administered to 150 ME/CFS patients. It included open-ended questions about triggers, experiences, […]

The Never-Ending Challenge Of Dealing With Post-Exertional Malaise (PEM)

From the NotcJust Tired Blog.   After a good day, or a spell of feeling pretty ok, it’s always a kick in the teeth when Post-Exertional Malaise (PEM) catches up with you. As I’m sure those of you living with ME/CFS, will be all too familiar with. For those not familiar, PEM is the worsening […]

Why Terms Like ‘Fully Accessible’ Don’t Help Disabled People

  By Carrie-Ann Lightly. Visiting a new place can be anxiety-inducing for even the most confident disabled person. A holiday, a weekend trip, a day out – even popping to the local shops. Why would you be worried about nipping out for a loaf of bread, I hear you ask? Because, dear reader, the language […]

Scotland Could Be Set For ‘Ground-Breaking’ Move On UN Convention

  By John Pring in Disability News Service.   Disabled people in Scotland could be set for “ground-breaking” improvements to the “protection, progression, and promotion” of their human rights, after their government pledged to incorporate the UN disability convention into Scottish law.  The promise came as the Scottish government accepted the 30 recommendations made in a […]

Disabled People And Carer’s Experiences Of Accessing The Coronavirus Vaccine

From Disability Horizons. The coronavirus vaccine programme has been in action across the UK since December 2020 and more than 10 million people have received their first dose so far. With the first four priority groups being given the vaccine, we ask disabled people, those with health conditions and carer’s thoughts and experiences of accessing […]

Vulnerable Say They’ve Been ‘Forgotten’ As Covid Vaccine Goes To Young And Healthy

By John Siddle in The Mirror. Serious health condition sufferers say they have been overlooked in the jab rollout after the Government chooses to vaccinate people by age once priority groups are done. Vulnerable Brits say they have been ‘forgotten’ in the vaccines rollout as young and healthy people get jabs. Those with serious health […]

All In Your Head

From Undiagnosis. I have been dropping various hints over the last few months about a non-fiction project I have been working on for the last two and a half years. It’s called All In Your Head, and you can find out more about it on the website here. In brief, it’s the story of what happens when […]

Audio Recording Option Set To Be Introduced For All PIP Assessments, Says DWP

  By John Pring in Disability News Service.   The Department for Work and Pensions (DWP) has finally agreed that all disabled people being assessed for personal independence payment (PIP) will be able to have their face-to-face assessments recorded. The promise has come in a letter to the Right to Record action group, a disabled-led […]

Low Dose Hydrocortisone: Flare Buster For Fibromyalgia And Chronic Fatigue Syndrome ?

  By Cort Johnson in Health Rising.   Cortisol, our body’s main stress hormone, has an amazing reach. Given the effects it has on our metabolism, inflammation, blood pressure, blood sugar, energy production and even the sleep-wake cycle, it’s no surprise that researchers early on latched onto signs of cortisol problems in chronic fatigue syndrome (ME/CFS) and […]

Post-Traumatic Stress Disorder – Recognizing PTSD, Treatments And Therapies

  By Rachel Green and Wendy Rhodes in Weighted Blanket Guides.   Post-Traumatic Stress Disorder (PTSD) is a psychiatric disorder that affects 7.7 million Americans every year. PTSD can occur in individuals who have witnessed or experienced a traumatic event, causing them debilitating stress. Some of the common causes of PTSD include war/combat, natural disaster, violence against […]

Say What ? Attention Deficits Highlight Why Fibromyalgia (And ME/CFS) Are Such Different Diseases

By Cort Johnson in Health Rising.   How fibromyalgia, chronic fatigue syndrome and allied diseases are so different from diseases like rheumatoid arthritis. Fibro-fog, brain-fog, chemo-fog… It can get pretty dim out there if you have fibromyalgia (FM), chronic fatigue syndrome (ME/CFS) and environmental illness (EI). If you have these conditions and feel like you’re […]

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