Fibromyalgia

Shame, Stigma And “Unexplained” Symptoms

medical

  Katharine Cheston discusses the isolation, disbelief and stigma experienced by people with poorly understood medical conditions Autobiographical accounts of illness tend to follow a similar script. Typically, they open with an interruption: new symptoms render the normal abnormal, precluding what had previously been taken for granted. These symptoms are recounted to a healthcare professional: […]

DWP ‘Performs Partial U-turn’ Over DNS ‘Ban’ After Criticism From Campaigners

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  By John Pring in Disability News Service.   The Department for Work and Pensions (DWP) appears to have performed a partial U-turn after disabled campaigners reacted angrily to an apparent ban on media requests from Disability News Service (DNS). Last week, DNS reported how DWP’s press office had failed to provide a meaningful response […]

Balancing Hope And Acceptance With A Chronic Illness

Blog

  By Caroline Elizabeth in the Frozen Amber Blog.   Finding acceptance while holding on to hope with a chronic illness is like walking a tightrope, especially as the years grind on. Hope is a vital life force that propels us, whereas acceptance allows us to discover new ways of living within the moment. Clearly […]

Disabled Peers Call On Government To Scrap Care Act Coronavirus Powers

Parliament

  By John Pring in Disability News Service.   Two disabled peers have called on the health and social care secretary to scrap powers given to local authorities that allow them to suspend some of their social care duties during the coronavirus pandemic. Crossbench peers Baroness [Jane] Campbell and Baroness [Tanni] Grey-Thompson have written to […]

Stick With It…….

Writing Poetry

    STICK WITH IT….. In life we like to fit right in To mix in with the crowd Not to shout, not stand out Not to be too loud But sometimes things just come along That force us into change I’m talking Chronic Illness Making life so strange When M.E. hits, it hits you […]

Leeds Disabled Activist Campaigning Against Proposed Changes To Chronic Pain Treatment

Chronic Pain

  By Mark Lavery in the Yorkshire Evening Post.   A disabled activist  from Leeds who suffers from a  chronic pain condition is campaigning against major changes to the way patients like them are treated. Saba Mir, 28, of Woodhouse – who is non-binary – has suffered from ME for two years and is in severe and […]

Ritalin (Methylphenidate) For Chronic Fatigue Syndrome And Fibromyalgia

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  From Health Rising.   Ritalin Is… a central nervous system stimulant. Created in 1954, Ritalin has been in use for over sixty years. (Check out a History of Ritalin here). It was first FDA approved in 1955 to treat ‘hyperactivity’ and later was approved to treat attention deficit hyperactivity disorder (ADHD). Ritalin increases extracellular levels […]

We’re 20 Percent Of America, And We’re Still Invisible

USA

  By Judith Heumann and John Wodatch in the New York Times. Ms. Heumann is a disability rights activist. Mr. Wodatch is a civil rights lawyer.   This month as the 30th anniversary of the Americans With Disabilities Act approached, we asked two prominent figures in the disability rights movement, Judy Heumann and John Wodatch, where they thought […]

Is Fibromyalgia And Chronic Fatigue Syndrome Actually Small Fiber Polyneuropathy ?

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  By Cort Johnson in Health Rising.   Chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) produce so many symptoms that diagnosing them can be difficult for uninformed doctors. While we know that small fiber polyneuropathy (SFPN) (or small fiber neuropathy (SFN) commonly occurs in both these diseases, what I didn’t realize until I read the […]

Feeling Alone With ME/CFS, Fibromyalgia Or POTS ? Why Finding A Connection Matters – A Tribute To A Leader Of The Community

Lonely

  By Michael Cuthbert in ProHealth.   It was about 4 years into severe illness, when pain had become more than just an issue during flare ups – it had become a daily occurrence. What was causing all these symptoms? Just when I had found a way to adjust to a new normal, a new […]

EHRC Failed To Consult Its Own Disabled Advisers Before Snubbing DWP Deaths Probe

Disability

  By John Pring in Disability News Service.   The equality watchdog failed to consult its own committee of disabled advisers before deciding not to investigate deaths of benefit claimants that have been linked to the Department for Work and Pensions (DWP). It came as disabled activists and relatives of disabled people whose deaths have […]

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 ?

Gaslighting

  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 […]

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