Politics

Government Of Canada Invests $1.4M In Biomedical Research To Improve The Quality Of Life Of People Living With Myalgic Encephalomyelitis

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    From: Canadian Institutes of Health Research MONTRÉAL, August 22, 2019 – It is estimated that more than 580,000 Canadians live with myalgic encephalomyelitis (ME), formerly known as chronic fatigue syndrome, or ME/CFS. This poorly understood, multi-system disease is debilitating and can strike individuals of all backgrounds and at any age. Patients experience symptoms including unrelenting exhaustion […]

Crippled: Austerity And The Demonisation Of Disabled People By Frances Ryan – Review

Disability Dice

  By Yvonne Roberts in The Guardian.   Two years ago the United Nations released the findings of a secret inquiry into state-level violations of the human rights of disabled people. Its conclusion was that a “human catastrophe” was under way. In every sphere, including employment, housing, education and social security, disabled people are hugely disadvantaged. Shamefully, […]

My ME Puzzle

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    MY ME PUZZLE From our early days as we grow We learn and add to what we know Each piece of knowledge builds a picture To help us make our living richer We find the people who fit right in Our family, friends, our kith, our kin We find beliefs, our way, our […]

Disabled People Already Fight Battles Every Day. Making Us Prove We Need Benefits Is Almost Inhumane

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  By Samantha Renke in The Metro.   Living with a disability in the UK today means living in a state of perpetual fear, feeling unheard, patronised and at times like a burden – and it can take a huge toll on your mental health. I was born with a genetic condition called Osteogenesis Impefecta […]

Theresa May’s Disability Announcements ‘Are Just Cynical Leftovers’

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    By John Pring in Disability News Service.   Disabled people’s organisations have reacted with suspicion and some hostility to the outgoing prime minister’s attempt to shore up her “legacy” with a series of disability-related announcements. Although some of the measures announced by Theresa May (pictured) were welcomed, many user-led organisations questioned why she had left […]

Government Admits Not Considering Impact Of No-Deal Brexit On People With A Disability

Disability Dice

    By Benjamin Kentish in The Independent.   Ministers have been condemned after admitting that they have not carried out any assessment of the impact that a no-deal Brexit would have on the lives of people with disabilities. The government was accused of having “ignored” people with a disability after admitting that “no formal assessment” had been conducted, despite fears over a […]

DWP: 80 Charities File Watchdog Complaint Over ‘Misleading’ Universal Credit Adverts

Universal Credit

By Dan Bloom in The Mirror.   The Disability Benefits Consortium claims the adverts are “deliberately misleading” and contain “obvious exaggerations”. Charities have reported the government to the advertising watchdog over “deliberately misleading” promotions for Universal Credit. The Disability Benefits Consortium, a coalition of more than 80 disability charities, lodged a formal complaint to the Advertising […]

DWP Quietly Hands Private Firms £600m Extra To Test Disabled People For Benefits

DWP Caxton House

  By Dan Bloom in The Mirror.   EXCLUSIVE: Atos and Maximus had their PIP and ESA contracts extended for the second time despite accusations they’re running a “failing” welfare system. Now the eye-watering cost to taxpayers can be revealed. Tory ministers are quietly handing private firms an extra £630 million to test sick and […]

We Desperately Need To Be Able To Diagnose ME At Earliest Stage

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  From IOM Today. News from The Isle of Man.   Former government minister Phil Gawne has issued a plea to the Health Minister to try harder to give people with ME the service they need. Mr Gawne was speaking after Health Minister David Ashford told the House of Keys last week that money allocated […]

Coming Soon: The Great Universal Credit Deception

Universal Credit

  By  Aditya Chakrabortty in The Guardian. How to sell the unsellable? How to pretend utter chaos is a plan coming together? How to persuade the public, who just refuse to buy it, to at least keep on paying for it? I believe I have found the answer. It comes in the form of an internal […]

Boost For People With ME And Chronic Fatigue Syndrome Thanks To Australian Parliament

Australia

    by Sasha Nimmo The Myalgic Encephalomyelitis (ME) and chronic fatigue syndrome (CFS) patient and research communities are delighted the Australian parliament officially recognise the urgent need for biomedical research in the field. Senator Anne Urquhart, a Tasmanian Labor senator, (on behalf of her colleague Senator Helen Polley) and Senator Stirling Griff, a Centre […]

Cutting Disability Services Doesn’t Save Money. But It Does Damage Lives

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By Frances Ryan in The Guardian.   In times of deep inequality and shrinking services, politics is often framed like a David and Goliath battle. You see it in the mothers who this week challenged the London developers trying to stop their “social housing kids” playing in segregated play areas. Or the teachers and parents in Cambridge marching against […]

Who Reviews ME/CFS Applications For NIH ?

Funding

    By Jennie Spotila in Occupy  M.E.   There is no question that NIH’s funding of ME/CFS research has been minuscule relative to the size of the public health crisis. Review of ME/CFS grant applications at NIH has drawn scrutiny from the public as one contributing factor. The public perception is that the grant review panelists […]

There Is Something Right In The State Of Denmark

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        From Invest In ME Research.   Following excellent work by European ME Alliance-Denmark member Dansk ME Foreningen, and work and input by those such as European ME Clinicians Council member Dr Jesper Mehlsen, there is now unified support in the Danish parliament for separating ME G93.3 from Functional Disorders and acknowledgment […]

Denmark: MP’s Will Vote Whether To Recognise ME As WHO-Defined Disease !

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    From #MEAction.   This past Tuesday, March 12, Danish Health MPs unanimously agreed on a declaration that will recognise myalgic encephalomyelitis (ME) as a distinct disease, remove it from the “functional somatic syndromes” category, and promote the World Health Organization (WHO) diagnostic codes for ME. Parliament will vote on the declaration this Thursday, […]

Northern’s Long Six-Carriage Trains Delayed By Two Years

RAIL Branson 1...Handout picture released Tuesday June 5, 2001 of a Voyager diesel train which Sir Richard Branson hopes will kick start a "rail renaissance".  He hopes that the new 125 mph trains will drastically cut journey times on Virgin Rail's two routes - West Coast main line and CrossCountry (correct).  Complete with airline-style audio entertainment at every seat, the Voyager trains are being introduced initially on the CrossCountry Birmingham-Reading-Brighton route to beat heavy road congestion in the area.  The trains, which have an on-board shop to replace the old-style buffet, will carry passengers on a local shuttle service between Birmingham and Reading and from July 22 they will become part of the Birmingham-Brighton timetable.  See PA story RAIL Branson.  PA photo: Handout/Virgin.

  By Tom Burridge, Transport correspondent, BBC News.   Train operator Northern’s six-carriage long services in and out of Leeds station have been delayed by two years, BBC News has learned. The longer trains were to be introduced at the end of this year but will now not enter service until late 2021. The delay is […]

Newton Forced To Apologise After Misleading MPs In WOW Debate

DWP Caxton House

    By John Pring in Disability News Service.   The minister for disabled people has been forced to apologise to MPs after Disability News Service (DNS) caught her misleading MPs about support for disabled people for the fourth time in less than a year. The misleading comments by Sarah Newton about disability poverty came in […]

Another Big Bill For The £24m Health Centre That Costs The NHS £2m A Year To Run And Has NEVER Been Used

Hospital

  By Lisa Meakin in the Manchester Evening News.   Not a single patient has used the Altrincham Health and Wellbeing Centre – now another £1.5m could be spent turning part of it into office space. Another £1.5m could be spent turning part of a brand new health centre into OFFICE space because the NHS services it […]

Government Is Failing On Disabled Women’s Rights, UN Is Told

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    By John Pring in Disability News Service.   Activists have told a UN committee how the UK government is failing to address the significant barriers and human rights violations faced by disabled women in accessing social security, justice, jobs and health services. Eleanor Lisney and Rachel O’Brien, from the disabled women’s collective Sisters of Frida, were […]

Chronic Fatigue Syndrome: Research: Written question – 221619

Parliament

  Q Asked by Mrs Sharon Hodgson (Washington and Sunderland West) on 14 Feb 2019. Department for Business, Energy and Industrial Strategy Chronic Fatigue Syndrome: Research 221619 To ask the Secretary of State for Business, Energy and Industrial Strategy, how many grant applications have been made to the Medical Research Council for ME/CFS related research since 2010; how […]

Chronic Fatigue Syndrome: Medical Treatments: Written question – 218214

Parliament

  Question by Frank Field MP. Chronic Fatigue Syndrome: Medical Treatments. 218214 To ask the Secretary of State for Health and Social Care, what steps his Department is taking in response to the resolution of the House of 24 January 2019 on appropriate ME treatment. Answer by Steve Brine: The Government is investing over £1.7 […]

Amber Rudd Links Universal Credit To Rise In Food Bank Use

Universal Credit

  From BBC News.   Amber Rudd says the increased use of food banks is partly down to problems in rolling out universal credit. The work and pensions secretary said she was “absolutely clear there were challenges with the initial roll-out” of the benefit and that the difficulty in accessing money was “one of the […]

Who Reviews ME/CFS Applications For NIH ?

Funding

    by Jennie Spotila in Occupy M.E. There is no question that NIH’s funding of ME/CFS research has been minuscule relative to the size of the public health crisis. Review of ME/CFS grant applications at NIH has drawn scrutiny from the public as one contributing factor. The public perception is that the grant review panelists have not been […]

DWP Refuses To Reveal Police Forces That Share Information On Disabled Protesters

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By John Pring in Disability News Service.   The Department for Work and Pensions (DWP) is refusing to say which police forces have passed it video footage and other information about claimants of disability benefits who have taken part in anti-fracking and anti-austerity protests. DWP’s attempt to hide its links with police forces has caused […]

Trial By Error: Steve Brine’s Troubling Claim In Parliamentary Debate On ME

David Tuller

By David Tuller, DrPH During last Thursday’s historic debate on ME in the House of Commons, it was refreshing to watch one MP after another stand up and slam the PACE trial and the non-evidence-based treatment paradigm promoted for decades by the GET/CBT ideological brigades. It was also interesting to note that no one defended this egregious […]

Universal Credit Claimants Are Being ‘Trapped In A Downward Spiral Of Debt And Hardship’

Universal Credit

By Nicola Slawson in Huffington Post.   Universal Credit claimants are left “swimming against a tide of unmanageable repayments” when they are forced to take loans ahead of their first payments, it has been claimed. The comments come as the government has responded to a damning report by the Work and Pensions select committee, which […]

Universal Credit Is An Unmitigated Catastrophe For Ill And Disabled People

DWP Caxton House

      Written by Kitty S Jones in Politics and Insights.    I co-run an online advice and support group for people going through Personal Independence Payment (PIP) and Employment and Support Allowance (ESA) claims, assessments, mandatory reviews and appeals. Recently there has been a spike in people being reassessed for their awards of both kinds of […]

Stuart Murdoch’s Open Letter Ahead Of The ME Debate

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  By Stuart Murdoch in #MEAction.   Stuart Murdoch is the lead singer of Belle and Sebastian. He has had ME for 28 years and he has kindly shared with us this open letter to the UK government ahead of the ME debate on Thursday, 24th January. Dear UK Government, I am one of the […]

A Watershed Moment Is Happening For Millions Of Missing People

Parliament

By Steve Topple in The Canary.   There will soon be a watershed moment for millions of chronically ill disabled people. Because what one MP described as a “medical scandal” will now face a full parliamentary debate. To read the rest of this story, click on the link below:   Link to ME story

Carol Monaghan MP Secures Backbench Debate On ME On 24 January 2019

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  Carol Monaghan, MP for Glasgow NW. SNP Spokesperson for Education, Armed Forces & Veterans, is delighted that @CommonsBBCom have granted a Backbench debate on #ME. This debate will take place on Thursday 24th January. Thanks to everyone who has campaigned to achieve this.

The NIH Is Thwarting Research On A Poorly Understood Yet Serious Condition

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      By JENNIFER SPOTILA in statnews.com.   When I first developed myalgic encephalomyelitis in 1994, I had no idea that I would be just as sick 25 years later, or that there would still be limited scientific understanding of the disease and no effective treatments. Nor did I imagine that my career as a lawyer was over, and […]

Rudd Has Not Delayed Roll Out Of Universal Credit, DWP Confirms

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  By John Pring in Disability News Service.   The roll out of the government’s much-criticised universal credit benefit system has not been delayed and will proceed as planned, the Department for Work and Pensions (DWP) has confirmed. Reports at the weekend suggested that new work and pensions secretary Amber Rudd had decided on a […]

Officials Fail To Collect Data On People Wanting To Apply Offline For Online-Only Universal Credit

Universal Credit

  By Simon Rushton in iNews.   Officials behind Universal Credit are being criticised for failing to track data on people who want to apply offline. Universal Credit is the government’s first digital-only service, and claimants must apply online for the Department of Work and Pensions benefit. But there worries that the system is excluding […]

Not All Disabilities Are Visible……..

Invisible Illness

One of my favourite Christmas presents this year, a sticker for the car from my wife and daughter…… There is a need for a Government backed, nationwide TV and Radio educational campaign to raise awareness of Invisible Illnesses and Disabilities.    

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