Politics

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.    

Trial By Error: Australian Draft Report Seeks Comments

David Tuller

    By David Tuller, DrPH in Trial By Error. In an eagerly awaited draft report, an Australian advisory committee on ME/CFS has called for the development of up-to-date domestic clinical guidelines and an increase in biomedical research into the pathophysiology of the illness. The draft report, which could have a major impact on health policy […]

UN Day Of Disabled People: Government Could Face Court Over Universal Credit

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  By John Pring in Disability News Service.   The government could be forced into court to defend its failure to make the much-criticised universal credit benefit system accessible to disabled people. A parliamentary meeting held to mark the International Day of Persons with Disabilities (IDPD) on Monday – and to call for universal credit […]

Australia’s Health Minister Listening To People With ME

Australia

    From ME Australia. by Sasha Nimmo Australia’s Health Minister, Greg Hunt, listened to people with Myalgic Encephalomyelitis (ME), families, scientists and organisations. Minister Hunt had a second meeting with ME Australia, along with Prof Paul Fisher, head of microbiology at La Trobe University and Dr Heidi Nicholl, Emerge Australia on Thursday. ME Australia […]

More Than A Million Homes Will Be Cut Off From The New Fully Switchable Smart Meters

Smart-Meters

  By Sam Meadows in The Telegraph.   More than a million households may be unable to benefit from the new breed of fully switchable smart meters, it has emerged. The £11bn smart meter roll-out, promoted by celebrities including Kirstie Allsopp has seen more than 12 million installed, but has been dogged by issues of meters “going […]

DWP Admits Failing To Keep Track Of Disability Discrimination Claims By Its Own Staff

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By John Pring in Disability News Service. The government department responsible for running the Disability Confident employment scheme has admitted failing to keep track of how many complaints of disability discrimination are made by its own staff. The Department for Work and Pensions (DWP) repeatedly brags about its much-criticised scheme, which aims to help employers recruit […]

Almost Half Of Disabled People Fear Being Stripped Of Benefits For Being ‘Too Active’

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    By Rachel Wearmouth in The Huffington Post . ‘You feel that whatever you say may be taken out of context,’ says former Paralympian. Disabled people avoid exercise as they fear being stripped of much-relied on benefits for appearing “too independent”, campaigners say. New research, published by Activity Alliance, says that almost half (47%) […]

Trial By Error: Some Thoughts About NICE

David Tuller

  By David Tuller, DrPH. The UK’s National Institute for Health and Care Excellence (NICE), which develops clinical guidelines for a range of medical conditions, is currently selecting a committee to develop a new guidance for the illness it refers to as myalgic encephaloymyelitis/chronic fatigue syndrome (ME/CFS). The new guidance will replace one written in 2007, when […]

UN Warns Of Damage To “The Fabric Of British Society” As The State Turns On Its People

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  By Jack Peat in The London Economic.   Drastic cuts to social support and welfare risk damaging the very fabric of British society, a UN report has today revealed. Concluding his 12-day visit to the country the UN Special Rapporteur on extreme poverty and human rights, Philip Alston, said the UK Government’s policies are […]

9 Tips To Guide You Through A PIP Benefit Application

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By Jo Moss in A Journey Through The Fog.   We all know the anxiety inducing feeling of the dreaded brown envelope falling on your door mat. Being assessed, or reassessed for health and disability benefits, is both exhausting and scary. We are often made to feel we are faking it or exaggerating our symptoms. […]

The Triumph of Eminence-Based Medicine

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  By Brian Hughes in Not The Science Bit.   Lines are drawn A quarter of a million Britons have been diagnosed with myalgic encephalomyelitis (ME), the condition also known as chronic fatigue syndrome (CFS). ME/CFS is a severe debilitating illness that renders patients either temporarily or perennially immobile. Sufferers will have often led very active lives […]

Woman’s Fight To Stop Disabled People Travelling For Benefit Assessments

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  By Emily Hennings in This Is Local London.   Claudette Lawrence, 49, is an activist and campaigner who also suffers with myalgic encephalomyelitis (ME), which can cause extreme mental and physical exhaustion. She has set up the petition because she has recently come into contact with a lot of people who are having problems when it […]

Carol Monaghan Continues Fight For Parliamentary Debate On ME

Carol Monaghan SNP

This is the text of an email I’ve sent to York MPs to gain support for a Parliamentary Debate on ME. We are entering an extremely crucial period where NICE are reviewing their guidelines to potentially remove the harmful Graded Exercise Therapy (GET) as a recommended treatment for this illness. They are however loading their […]

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