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May 04, 2021
WEDNESDAY 12 MAY UPDATE Response from NICE now added, please see belowOur Chief Executive, Sonya Chowdhury, has written to the National Institute of Health and Care Excellent (NICE)…
March 22, 2021
Action for M.E. and its partner #MEAction UK are today launching a survey to find out the effect that Covid-19 has on people with M.E Sam Bromiley, Participation and Influencing Officer…
January 26, 2021
The opportunity to take part in an international research study looking at the impact of M.E./CFS on quality of life of patients and their family members is open until 31st March 2021.…
January 25, 2021
The Disability Unit in the Cabinet Office is currently developing a National Strategy for Disabled People, scheduled for publication in spring 2021. To help inform the strategy, which…
November 10, 2020
The National Institute for Health and Care Excellence (NICE) has published its draft guidance on the diagnosis, treatment and management of M.E./CFS. Updated guidance has been long-awaited…
November 05, 2020
A second All-Party Parliamentary Group (APPG) meeting for M.E. in as many months is taking place in November. Following October’s APPG on welfare benefits, this meeting will focus on…
October 27, 2020
Please note that the updated NICE draft guideline for M.E. is scheduled to be released two weeks today, on Tuesday 10 November.Following the release of the draft guideline, there will be…
October 21, 2020
The British Association for CFS/M.E. (BACME), a network for UK clinical M.E. professionals, aims to “champion clinically effective practice in treating CFS/ME [sic] and other primary…
October 09, 2020
The first meeting of the newly formed M.E./CFS Priority Setting Partnership (PSP) Steering Group is taking place later today. The project, supported by three Government-backed research…
August 26, 2020
The Scottish Government’s Petitions Committee has ended its work on ME Action’s petition, supported by Action for M.E., calling for more investment research, training and education…
August 13, 2020
Action for M.E. Chief Executive Sonya Chowdhury has written an open letter to the Chancellor, Rishi Sunak, opposing plans for a new tax for online shopping.A new tax like this will…
August 06, 2020
Our Big Survey that we carried out last year gave us the chance to hear from over 4,000 people with M.E. This included hearing from children and adults with severe M.E.Feedback from…
July 16, 2020
UK disabilities charity Scope have written an open letter to the Prime Minister, calling on him not to forget disability equality in the Government's recovery plan, through the pandemic…
April 30, 2020
Action for M.E. has responded to two important House of Commons inquiries focusing on the impact Covid-19 and the lockdown has had on people with M.E.Over the past few months we have…
April 16, 2020
Can you share your experience to help the UK Government understand the impact of the lockdown and Coronavirus situation on people with M.E. and other long-term conditions?We are asking…
February 18, 2020
Fully revised for 2020, our comprehensive pacing guide is based on the insight and experience of people with M.E.Pacing is a an approach that can help people with M.E. take control…
February 03, 2020
Last month the Scottish Government launched the Neurological care and support: Framework for action 2020-2025. This framework sets out their vision for driving improvement in the care…
August 13, 2019
We are pleased to announce that Action for M.E. will be working with Oxford Brookes University to gather the experiences of children and young people with M.E. to develop a new guideline…
August 07, 2019
The Action for M.E. team warmly invites you to join us at our 2019 AGM and conference, Are you listening to M.E.? Voices from Action for M.E.'s Big Survey.In the past three months,…
July 23, 2019
What impact does M.E. have on your life? Does your GP really understand M.E.? What treatments help – or make your symptoms worse? If you have M.E./CFS, why not take our Big Survey…
July 19, 2019
Since 1 May, we've been asking children and adults with M.E. to share their experience of diagnosis, symptom management, and support in school or at work, in our Big Survey.This data…
May 01, 2019
For M.E. Awareness Month 2019, we are asking professionals, planners and policy-makers: "Are you missing M.E.?"Many children and adults with M.E. tell us they feel missed out, and left…
April 03, 2019
We are pleased to be able to let you see the results of the recent survey conducted on behalf of Forward ME. All the raw data was analysed and inserted into a comprehensive report by…
January 18, 2019
Action for M.E. wants all children living with M.E./CFS to get the support they need in school. We need to make sure we are focusing on the issues that matter most to families affected.…
January 11, 2019
Forward M.E. has launched a survey to gather evidence and experiences of Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT).The National Institute of Health and Care…
December 18, 2018
In October, the House of Commons’ Science and Technology Committee asked the public to inform them on potential areas of scrutiny. The committee expressed an interest to hear suggestions…
December 17, 2018
Are you aged 13 to 23 and living with M.E./CFS in Scotland? We want to hear from you! Schools can struggle to get it right for children and young people with M.E. Although M.E. is the…
November 20, 2018
Action for M.E. are testing out an idea we have for a new project that could potentially help support people with M.E. nationwide.This project would aim to link healthy volunteers with…
October 16, 2018
The National Institute for Health and Care Excellence (NICE) has published its final scope for its updated guideline on M.E./CFS, along with consultation comments and committee appointments.…
August 28, 2018
Action for M.E. has updated our five-year strategy for 2016 – 2021 to include our promises to children, young people and families living with M.E. Following the launch of our new…
March 28, 2018
Working with charity Disability Rights UK, the Care Quality Commission (CQC) wants to hear feedback from disabled people, including those with long-term conditions such as M.E., about…
March 21, 2018
Research is now being carried out by the Disability Benefits Consortium (DBC) into the impact of welfare reform on disabled people’s lives – and they want to make sure people with M.E.…
February 14, 2018
“No one should have any doubt the process needs urgent change.”Frank Field MP, Chair of the Work and Pensions Select Committee, has spoken out today about the consistent failings of…
October 30, 2017
"It has been a distressing time for me. By the time I was at tribunal, I was given a five-year award due to the severe impact all of this has had on my health."This is the experience…
October 20, 2017
How can we best design support services that reduce isolation, increase knowledge and awareness, and ensure equality of care for children with M.E. and their families?Designed and led…
October 13, 2017
Our Head of Communications and Policy will be speaking on BBC Radio 4’s You and Yours programme today about the challenges facing people with M.E. who apply for welfare benefits, specifically…
October 04, 2017
“During my assessment my M.E. was hardly acknowledged or really talked about. The assessor was a nurse and I felt they had little knowledge of my condition or the difficulties it presents…
September 14, 2017
“I was too unwell to appeal, knowing that the extra stress would cause further relapse.”That’s the experience of just one person with M.E. who inputted into the Disability Benefits…
September 12, 2017
The impact of M.E. will be brought to the attention of senior social workers today when Action for M.E.’s report into families facing false accusations is shared with them at a conference…
August 17, 2017
Less than half of UK NHS boards commission a specialist service for M.E., and Northern Ireland has no provision at all, leaving thousands of desperately ill people unable to access…
July 25, 2017
A new report by Action for M.E. into specialist services has confirmed that vast numbers of people with M.E. do not have any specialist services in their local area.The report, titled…
February 17, 2017
Action for M.E. has submitted its response to the Government’s consultation on work and disability, Improving lives: Work, Health and Disability Green Paper, representing the views…
February 07, 2017
The Disability Benefits Consortium (DBC) has just opened its Big Benefits Survey, which asks disabled people to share their experience of the benefits system. People with M.E. are encouraged…
January 23, 2017
We would like to say a huge thank you to everyone who participated in our Work, Health and Disability survey. The survey attracted a brilliant reaction, with more than 600 people responding…
September 16, 2016
Action for M.E. has responded to the second independent review of the Personal Independence Payment (PIP) assessment. We are hugely grateful to the more than 300 people with M.E. who…
August 04, 2016
The Department for Work and Pensions (DWP) has issued a call for evidence on the Personal Independence Payment (PIP) for its second independent review of the benefit.Action for M.E.…
July 05, 2016
Action for M.E. volunteer Catherine Hale attended a roundtable discussion yesterday where she questioned Alistair Burt, Minister for Social Care. The Independent Living Strategy Group,…
June 27, 2016
People with M.E. and other disabilities living in Scotland are being asked what policies and criteria they would like the new Independent Living Fund for Scotland to include when it…
May 26, 2016
The Independent Living Strategy Group is asking people with M.E. to share their experiences of social care and support in order to present evidence to the Government.Baroness Jane Campbell,…
May 24, 2016
Minister for Disabled People Justin Tomlinson was presented with evidence last week, including the experiences of people with M.E., highlighting the impact of the 20 metre Personal…
May 13, 2016
Action for M.E. Chief Executive Sonya Chowdhury will give evidence at Tynwald, the parliament of the Isle of Man, this morning.She has been invited to do so by the Social Affairs Policy…
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