Fibromyalgia

Coronavirus: Peer Calls For An End To Use Of ‘Vulnerable’ To Describe Disabled People

Disability Dice

  By John Pring in Disability News Service.   A leading disabled campaigner and crossbench peer has called for an end to the use of the word “vulnerable” to describe disabled people. Baroness [Jane] Campbell said the term had been used repeatedly to describe disabled people during the “worst times” of the pandemic crisis. But she […]

As Lockdown Eases, Those Of Us With Chronic Illnesses Must Not Be Left Behind’

Frustration Chronic Illness

  By Helen Wilson-Beevers in The Independent. When Boris announced that pubs, cinemas, hair salons and hotels will reopen from the 4th July, there came collective chatter about reclaimed freedom. There is a palpable feeling holidays and nights out are once again within reach; a new normal is just around the corner. In England, too, shielding for […]

Coronavirus: Government’s Failure To Offer Video PIP Appeals ‘Is Discrimination’

Benefits

  By John Pring in Disability News Service.   The government’s continuing failure to allow benefit appeals to be heard via video conferencing is discriminating against disabled claimants, say welfare rights experts. Many disabled people are being forced to ask for their tribunals to be postponed, because they are only being offered a telephone hearing, […]

Coronavirus: Disabled People Have Been Excluded And Marginalised, Says Report

Disability Parking

  By John Pring in Disability News Service.   Disabled people have faced discrimination in every area of their lives from the beginning of the coronavirus pandemic, new research by a user-led organisation has found. The research by Inclusion London reveals that the COVID-19 crisis is impacting disabled people across every part of their lives. Disability News […]

Have You Been A Victim Of Medical Gaslighting ?

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  From A Journey Through The Fog.   Trigger warning; the examples of medical gaslighting highlighted in this post may be distressing to some. There is growing awareness around the prevalence of medical gaslighting, especially amongst female patients. Last week tens of thousands of people took to Twitter to share their horror stories of neglect […]

Do Graded Activity Therapies Cause Harm In Chronic Fatigue Syndrome ?

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From The Journal of  Health Psychology.   Abstract Reporting of harms was much better in the PACE (Pacing, graded Activity, and Cognitive behavioural therapy: a randomised Evaluation) trial than earlier chronic fatigue syndrome trials of graded exercise therapy and cognitive behavioural therapy. However, some issues remain. The trial’s poor results on objective measures of fitness […]

Disabled People Forced To Fight For Right To Live Ordinary Lives, MPs Hear

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By John Pring in Disability News Service.   Disabled people are being forced to fight for their right to live ordinary lives because of the flawed and under-resourced social care system, MPs have been told by a disabled campaigner. Anna Severwright told members of the Commons health and social care committee on Tuesday that she and […]

A Letter To Jeremy Hunt

Doctor

  ……and How Millions of ‘MUS’ Patients Lose Out in the NHS. By Goodelf (Part 2 in the ‘Untangling the MUS Web’ series of articles) In my first online post, “Untangling the MUS Web” – https://opposingmega.wordpress.com/2020/05/01/untangling-the-mus-web/ , I revealed how doctors, healthcare commissioners and other healthcare workers have been misled regarding the risks of adopting the current […]

From Fight/Flight To Neuroinflammation: Explaining The “Functional Pain” In Fibromyalgia And ME/CFS ?

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By Cort Johnson in Health Rising.   There’s neuroinflammation and there’s the stress response. Recently, we saw Mackay and Tate propose that neuroinflammation in ME/CFS and FM was linked to a whacky stress response centered in the hypothalamus. In 2018 Chinese-Duke University collaboration suggested that the stress response and neuroinflammation are linked as well, although […]

Harrogate Charity Urges Businesses Coming Out Of Lockdown To Consider Disabled People In Pre-opening Preparations

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  From The Yorkshire Times.   A Harrogate charity is urging businesses coming out of lockdown to consider the needs of disabled people in their pre-opening preparations. And for those opening their doors this coming Monday (June 1) – and in two weeks’ time – Disability Action Yorkshire has published guidance on how to achieve […]

Are Intranasal Drugs The Future For ME/CFS And Fibromyalgia ?

Research

By Cort Johnson in Health Rising.   The neuroinflammation findings in chronic fatigue syndrome (ME/CFS) and fibromyalagia (FM), while restricted to a few studies, are still pretty compelling. We know that many, if not all of the symptoms associated with ME/CFS and FM such as fatigue, pain, cognitive problems, and mood issues can be produced […]

Bus Company Forced To Act After Campaigner’s Wheelchair Space Victory

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  By John Pring in Disability News Service.   A disabled campaigner has secured an “important victory” that has forced a transport company to bring in new measures to protect the rights of wheelchair-users to use buses. Wheelchair-user Nina Grant, from north London, began legal action against Arriva after repeatedly being left on the pavement […]

Why Certain Illnesses Remain Mysterious

Invisible Illness Graphic

  By Sarah Ramsay in The Paris Review.   When I first began research for my book about women with mysterious illnesses, I was overwhelmed. No two women were alike. The number of illnesses that qualified as mysterious was staggering. Lyme, post-treatment Lyme disease syndrome, candida, Epstein-Barr, Ehlers-Danlos, polycystic ovary syndrome, subclinical hypothyroid, dysautonomia, irritable […]

Beyond Tired : ME/CFS Life – Awareness Week 2020

Invisible Illness Graphic

From the Invisibly ME Blog.   The 11th to 17th May 2020 marks ME/CFS Awareness Week. It was also Fibromyalgia Awareness Day on 12th May, which I posted about recently with debunking 6 fibro myths. The colour blue is recognised as the colour of ME awareness and many charities, groups and individuals are doing their bit […]

Minister Criticised By Government ‘Disability Champion’ Over Third Access Exemption

Accessibility

By John Pring in Disability News Service.   The government has been criticised by one of its own “disability champions” after it granted the transport industry its third temporary exemption from access laws, so it could continue to use inaccessible vehicles for rail replacement services. In December, it emerged that the government was allowing the […]

Coronavirus: MPs And Peers Ask PM For A ‘Disability Inclusive’ Response To Pandemic

Disability Dice

By John Pring in Disability News Service. At least 10 disabled MPs and peers have signed a letter calling on the prime minister to ensure that the government improves its support for disabled people in its response to the coronavirus pandemic. The letter, sent to Boris Johnson by the all-party parliamentary group for disability and […]

Coronavirus: Disabled Benefit Claimants Tell MPs How Crisis Has Hit Them Hard

Benefits

    By John Pring in Disability News Service.   Disabled people have told MPs how they have been hit particularly hard by the impact of the COVID-19 crisis on the benefits system. The Commons work and pensions committee carried out a survey of benefit claimants as part of an inquiry into the response of the Department […]

Coronavirus Has Made It Even Easier To Forget About Disabled People

Disability Parking

  By Frances Ryan in The Guardian.   As the weeks go on, it is becoming clear coronavirus is not an equal opportunity pandemic. Guardian analysis last week found ethnic minorities in England are dying in disproportionately high numbers compared with white people. And now research from the Office for National Statistics (ONS) shows the pandemic is having a […]

7 Signs That You’re Running Out Of Spoons

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    By ME/CFS Self-Help Guru.   One frustrating thing about energy limiting chronic illnesses like ME/CFS, Fibromyalgia and Lyme disease, is that energy levels can fluctuate from one day to the next. Christine Miserandino’s Spoon Theory has helped many people understand the concept of rationing out your energy by relating an energy unit to a spoon, […]

Disabled People Deserve Equal Access To Critical Care – Judicial Review

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By Doug Paulley in his kingqueen Blog.   Many disabled people may be left to die so that others can be saved. That’s the impact of likely coming increased demand for hospital treatment, intensive care beds and ventilators, according to multiple reports in the Press. Guidance by the National Institute for Clinical Excellence, from the British Medical Association, […]

Will COVID-19 Leave An Explosion Of ME/CFS Cases In Its Wake ?

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  By Cort Johnson in Simmaron Health.   The first SARS epidemic in 2003 featuring SARS-CoV now seems like a poor dress rehearsal for today’s SARS CoV-2 outbreak. With just 8,000 cases in total and 774 deaths, (compared to almost 1,000,000 cases and 4,000 plus deaths and rising rapidly) it seems hardly worth including in the same […]

Labour’s New Leader Faces Pressure To Follow Through On Campaign Rights Pledges

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By John Pring in Disability News Service.   Keir Starmer is set to face pressure from the disabled people’s movement to commit his party to keep a series of pledges he made during his successful campaign to replace Jeremy Corbyn as Labour leader. Among the most striking of those pledges was to back calls by […]

10 Things People Don’t Realize You’re Doing Because You Have An Invisible Illness

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  By Kim Quindlen in Thought Catalog.    Often, the hardest part of having an invisible illness is not the chronic pain or the constant discomfort or any of the other symptoms – it’s the fact that other people cannot really see or understand what you’re going through. Although the disability causes endless problems and challenges for […]

Coronavirus And Chronic Illness

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  What does Covid-19 mean for the chronic illness community? A guest blog by Catherine Hale with Alison Allam, Victoria Clutton and Leonora Gunn in Disability Wales. The Covid-19 crisis has us all in shock. But it has also shone a light on our social exclusion as a group of disabled people, as well as our […]

Coronavirus: Council ‘Tells Social Workers To Stop All Their Usual Work’

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  By John Pring in Disability News Service.   A local authority apparently told its social workers to “stop all their usual work” until the coronavirus crisis was over, even before emergency powers to reduce their duties under the Care Act became law. The controversial Coronavirus Act, which became law last Wednesday (25 March), suspended […]

Benefit Assessment Companies ‘Have Made Almost No Progress’ On Safeguarding

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  By John Pring in Disability News Service.   The three companies that carry out disability benefit assessments for the government have made almost no progress in the last year on alerting local authorities to concerns about claimants whose safety is at risk, according to a disabled campaigner. Last year, freedom of information responses from […]

Coronavirus: Lack Of Engagement With DPOs ‘Has Led To Bad Policies’

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  By John Pring in Disability News Service.   The government is facing claims that its continuing and repeated refusal to consult with disabled people’s organisations (DPOs) has contributed to its failure to protect disabled people’s rights in responding to the coronavirus crisis. Successive governments since 2012 have been criticised for their failure to engage […]

Using A Service: Reasonable Adjustments For Disabled People

Disability

  From the Equality and Human Rights Commission.   Equality law recognises that bringing about equality for disabled people may mean changing the way in which services are delivered, providing extra equipment and/or the removal of physical barriers. This is the ‘duty to make reasonable adjustments’. A duty is something someone must do, in this […]

Eight Reasons People With Chronic Fatigue Syndrome (ME/CFS) And/Or Fibromyalgia Should Take Care

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  By Cort Johnson in Health Rising.   Please note, if it’s not obvious, that I’m not a doctor – I’m a patient. Take these musings as you will. We don’t know if people with ME/CFS or FM are more at risk of: a) getting COVID-19; or b) coming down with a severe case of […]

Using A Service: Reasonable Adjustments For Disabled People

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From the Equality and Human Rights Commission.   Equality law recognises that bringing about equality for disabled people may mean changing the way in which services are delivered, providing extra equipment and/or the removal of physical barriers. This is the ‘duty to make reasonable adjustments’. A duty is something someone must do, in this case […]

16 Things People Don’t Realize You’re Doing Because Your Pain Is Constant

ChronicPainManagement

  By Veronica Vivona in The Mighty.   Living with constant pain can be extremely frustrating. When you don’t feel comfortable, you might develop some habits designed to make things more manageable. You might have back pain that makes it hard to sit in certain chairs. You could potentially have widespread pain that makes it difficult to […]

Do You Ever Feel Like Giving Up ?

Lost

    By Jo Moss in A Journey Through The Fog.   Do you ever feel like giving up? Do you ever feel like you don’t have the strength to keep going? Do you ever feel like screaming; “I didn’t sign up for this”? Do you ever feel like the world is against you? Do […]

Does Britain Have A Transport Accessibility Problem ?

accessibility

  By BY BONNIE EVIE GIFFORD in Happiful.   Accessing public transport should be simple, shouldn’t it? Yet thousands face delays, inequalities in access, a lack of support and understanding. Enough is enough Whether we’re talking about your daily commute or venturing further afield, it’s hard to deny: travel can be stressful at the best of times. Overcrowding, […]

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