Politics

Scottish Lib Dems Pass Motion For ME, With Amendment

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  By Susan Cole in #MEAcion.   ME history was made this week in the historic capital of Scotland when delegates at the Scottish Liberal Democrats autumn conference voted to support conference motion SC5: Investing in ME – Recognition, Research, and Education. So it’s official, the motion, drawn up in consultation with #MEAction Scotland, is […]

If The Government Won’t Take ME Seriously Who Will ?

Nervous System

  By Lesley Scott in Third Force News.   What happens to patients’ rights when there is no accountability in the system? Myalgic encephalomyelitis (ME) is categorised by the World Health Organisation under diseases of the nervous system. The Scottish Government supports this categorisation and it underpins the current Scottish good practice statement on ME. […]

Councillors To Spend Day In Wheelchairs For Wheelchair Awareness Day

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  From The Skye Times.   Skye’s Councillors will spend a day entirely in wheelchairs for Wheelchair Awareness Day. Organised by the Skye and Lochalsh Access Panel, the event will take place in Broadford and Portree on Monday 27 August. The Councillors have given the day their full support and will spend the day trying a […]

I’ve Been Told To Wait Three Years For A Wheelchair That ‘Can Go Outside’

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  By Frances Ryan in The Guardian.   One of my abiding childhood memories was being given my first wheelchair. Until I was six, I had to resort to a large buggy, a mass of translucent plastic frames and ugly grey wheels. It was through the charity Whizz-Kidz that I finally got my first wheelchair, a streamlined […]

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”. […]

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 […]

DWP Refuses To Pay £125 To Discover Number Of Disabled People In Full-Time Jobs

Disability

  By John Pring in Disability News Service.   Ministers are refusing to commission work that would cost just £125 and would show how many disabled people are in full-time paid employment, and how that number has changed under successive Tory-led governments. Ministers, including the current work and pensions secretary Esther McVey, have repeatedly boasted of […]

Benefits Calculator

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  From Age UK.   What is the benefits calculator? Our personalised benefits calculator can tell you if you’re potentially entitled to claim extra money, based on the information you provide – such as whether you’re single/in a couple, where you live or if you care for anyone. It’s easy to use, quick, free and all […]

Karina Hansen 8 (Updated): The Aftermath Continues

Valerie Eliot-Smith

  By Valerie Eliot-Smith.   GOOD NEWS: I originally published this post in June 2018. I am re-publishing it today (10 August) as there has been an encouraging development since then. Thank you to Bente Stenfalk (see below) for the updated information. Original post follows the update. UPDATE August 2018 On 9 July 2018, psychiatrist Dr Charlotte Emborg […]

Friends In Australia’s Parliament For People With ME And Chronic Fatigue Syndrome

Australia

  By Sasha Nimmo in ME Australia.   Three senators have formed Parliamentary Friends of Myalgic Encephalomyelitis (ME) and chronic fatigue syndrome (CFS) group in Australia’s federal parliament. The Parliamentary Friendship group is co-chaired by Western Australian Greens Senator Jordon Steele-John,  Tasmanian Liberal Senator Jonathan Duniam and Queensland Labor Senator Claire Moore. This group will provide a […]

The Monster Disease Medical Schools Don’t Mention

Llewelyn King

  By Llewellyn King in Inside Sources.   For 10 long years, I’ve been writing and broadcasting about Chronic Fatigue Syndrome, now called Myalgic Encephalomyelitis (ME). Like all chronic diseases, it’s brutally unfair to the afflicted. But ME also can claim to have been unfairly treated by doctors and medical researchers, the pharmaceutical giants, and the politicians […]

Esther McVey Loses In Court On Universal Credit – But Says She Will Still Fight Others

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  By Ros Wynne Jones in the Mirror.   The long waits for help under UC continue to drive impoverished families below the breadline. In May I wrote about the ­distressing case of two men – one dying and one disabled – fighting Esther McVey in the high court over cuts to their support due to Universal […]

The Children Left Bed-Bound By Fatigue

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  By Felicity Monk in the New Zealand Herald.   What do you do with a child who falls ill and is never again well enough to return to school? Felicity Monk reports for The Wireless on the illness striking down thousands of New Zealand children and teenagers. Seven years ago, Teresa’s* three children, then aged 9, […]

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 […]

Esther McVey And Her Department Are Now Totally Out Of Control

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  By Steve Topple in The Canary.   Last year, the UN accused the Department for Work and Pensions (DWP) and successive governments of creating a “human catastrophe” for disabled people in the UK. Since then, the situation has seemingly got worse. The department is now out of control. But is the misery and torture the DWP […]

Watchdog’s ‘Issues Of Concern’ Over Regulator’s Treatment Of PIP Complaints

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From Disabled Go News.   A regulator has been told there are “issues of concern” about the way it deals with complaints against health and care professionals, including those who write dishonest benefit assessment reports. The Professional Standards Authority (PSA) agreed in January to look at concerns about the way regulators deal with complaints about […]

Why the Medical Research Grant System Could Be Costing Us Great Ideas

Research

    By Aaron E. Carroll in The New York Times.   The medical research grant system in the United States, run through the National Institutes of Health, is intended to fund work that spurs innovation and fosters research careers. In many ways, it may be failing. It has been getting harder for researchers to obtain grant support. A […]

Universal Credit IT System ‘Broken’, Whistle-Blowers Say

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  By Patrick Butler in The Guardian.   Universal credit is so riddled with design flaws and process faults that it is practically guaranteed to generate mistakes and delays that would push vulnerable benefit claimants into hardship, according to whistle-blowers. Service  centre workers have told the Guardian that glitches and errors in the “cobbled-together” system have […]

The Medical Community Is Changing Its Mind On Chronic Fatigue Syndrome. Why Aren’t Insurers ?

Brian Vastag

  By Steven Lubet and David Tuller in STAT News   Brian Vastag was enjoying a life that many people would envy. At age 41, he had achieved professional success as an award-winning health and science reporter for the Washington Post, covering important stories from around the world. That came to an end in July 2012, when he […]

Emerge Australia Welcomes $370,000 In Federal Funding

Australia

  From Mirage News.   Emerge Australia, the national organisation providing support, information and advocacy for people with Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS), has received $370,000 in Federal funding to support its work. It is the largest Federal funding that has been committed to a support organisation working in the ME/CFS space. CEO […]

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 […]

Australia Needs Lasting Consensus On NDIS Funding

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  From Probono Australia.   People with disability, their families, carers and advocates deserve the certainty of a National Disability Insurance Scheme which is sustainable, writes Bruce Bonyhady. Australia urgently needs a lasting consensus on the funding of the NDIS which builds trust in the disability sector, confidence in the Australian community and sustainability of […]

Charities Fail To Tell MPs About Clauses That ‘Prevent Them Attacking McVey And DWP’

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    By John Pring in Disability News Service.   Representatives of disability charities have given evidence to MPs about the impact of government social security reforms on disabled people, without disclosing that they signed contracts preventing them from attacking work and pensions secretary Esther McVey. Senior figures from Shaw Trust and the Disability Benefits […]

Parliamentary Debate On ME Research And Treatment

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  From Invest In ME Research.   A parliamentary debate on the research and treatment of Myalgic Encephalomyelitis (ME) secured by Carol Monaghan MP for Glasgow North West was held on Thursday 21 June 2018 at 1.30-4.30pm in Westminster Hall. The request for debate was raised with cross-party support at a Back Bench Committee Meeting […]

DWP Is Failing ‘Vulnerable’ Claimants Of Universal Credit, Says Watchdog

DisabledGo

  From Disabled Go News.   The Department for Work and Pensions (DWP) is failing to support “vulnerable” claimants and is unable to monitor how they are being treated under its new universal credit benefit system, according to an investigation by the public spending watchdog. The report by the National Audit Office (NAO) raises a string […]

Minister For Disabled People Caught Misleading MPs On Cuts To Support… Again

Sarah Newton MP

  By John Pring in Disability News Service.   The minister for disabled people has been caught misleading MPs – again – as she tried to defend her government’s repeated breaches of the UN disability convention. It was the second time in five months that Sarah Newton (pictured) has misled MPs in a House of […]

Atos And Capita Win PIP Contract Extension ‘Because DWP Is Chained To A Corpse’

DisabledGo

From Disabled Go News.   The government’s decision to extend the contracts of two discredited companies that carry out disability benefit assessments has been branded “appalling”, “shocking” and “a complete con”. The move has also been criticised by the Scottish government. Sarah Newton, the minister for disabled people, told MPs in a written statement this week that […]

“Listened To But Were We Heard ?” The NICE Guidelines Scoping Workshop

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  From #MEAction.   On 25th May 2018, NICE held an engagement workshop with stakeholders, looking at the draft scope for the new guideline on ME/CFS. This is the second workshop held by NICE in which stakeholders were given a chance to influence the development of the new guidelines. The draft scope will be amended […]

DWP Should Think Again On ESA Back Payments And Offer Compensation

DWP Caxton House

  From My Disability Matters.   The Department for Work and Pensions (DWP) should reconsider its decision to offer only a partial backpayment of the money owed to 70,000 disabled people who for years were not receiving the correct level of out-of-work benefits, MPs have heard. One Conservative member of the public accounts committee, Anne […]

Application In Parliament For Debate On ME

Parliament

  Below is a link to an application put forward today in Parliament to have ME debated in the main chamber.   This was put forward by Carol Monaghan MP, and supported by York MP’s, Julian Sturdy and Rachael Maskell.     Link to Parliamentary Application

What Lies Beneath England’s Allegiances And Rivalries ?

England

  By Mark Easton in BBC News.   Beneath the veneer of national identity, England is an elaborate tapestry of allegiances and rivalries. For centuries, bureaucrats have drawn lines on the map without understanding the invisible ley lines of belonging that criss-cross the English countryside. There are deep loyalties to ancient counties, proud cities and […]

Public Meeting On Flood Defences In Fulford

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  A public meeting will be held next week for local residents to hear more about the plans for flood defences in Fulford. This follows on from a successful campaign led by Liberal Democrat ward councillor, Cllr Keith Aspden, and local residents, which secured a total of £500,000 to be spent on additional flood defences […]

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