Potential merger: share your views and questions

September 07, 2021

For the past month, our Board of Trustees have been exploring a potential merger with UK charity The ME Trust, with a view to making a decision in mid-September. To inform this process…


Letter to NICE: concern over guideline delay

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)…


​Survey: the impact of Covid on people with M.E.

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…


​International M.E./CFS family impact study

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.…


National Strategy for Disabled People: have your say

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…


​Draft NICE guideline for M.E.: have your say

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The National Institute for Health and Care Excellence (NICE) has published its draft guidance on the diagnosis, treatment and management of M.E./CFS.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…


Invite your MP to the next APPG on M.E.

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…


Reminder: NICE draft guideline to be published 10 Nov

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…


​BACME position paper: comment and feedback

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…


First PSP steering group meeting to take place today

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…


M.E. petition to Scottish Government now closed

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…


Sign our letter calling to halt the disability tax

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…


See our survey feedback from people with severe M.E.

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…


See Scope's open letter to the PM

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…


Highlighting M.E. in two parliamentary inquiries

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…


Tell UK Gov your experience of COVID-19 support

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…


Updated resource: pacing for people with M.E.

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…


Neurological care and support in Scotland update

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…


Involving young people in the NICE guideline development

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…


Voices from our Big Survey: book your conference place

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,…


Take our survey, share your experiences

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…


Two weeks left to 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 is M.E. Awareness Month

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…


Results of the Forward ME survey for CBT and GET

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…


Have your say - support for your M.E. in school

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.…


​Forward ME's CBT and GET patient survey

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…


Commons' Science and Technology Committee enquiry

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…


Aged 13 to 23 and have M.E./CFS in Scotland?

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…


​We need your help! Connect M.E. survey

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…


NICE publishes final scope for M.E./CFS guideline

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.…


Our promises to children and young people with M.E.

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…


Your experience of health and social care for M.E.

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…


What impact has claiming benefits had on your life?

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.…


PIP and ESA report: "Process needs urgent change"

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…


One week left to share your experience of PIP or ESA

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…


How can we best support children with M.E.?

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…


Applying for PIP and ESA: share your story

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…


Your chance to take part in PIP and ESA inquiry

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…


Add your voice to those calling for action on PIP

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…


Senior social workers to learn about impact of M.E.

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…


M.E. in Northern Ireland: our NVTV interview

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…


New report: specialist NHS services for M.E. in the UK

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…


Highlighting the need for greater understanding of M.E.

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…


Take part in the Big Benefits Survey

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…


Work, health and disability survey: thank you!

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…


Action for M.E. responds to independent PIP review

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…


Do you claim PIP? Share your experience

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.…


Minister Alistair Burt responds to question on M.E. and social care

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,…


Your chance to help shape the new Independent Living Fund for Scotland

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…


Wellbeing, choice and control: what's your social care experience?

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,…


Tell us about the impact of the 20m PIP rule

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…


​Presenting evidence to Isle of Man government committee

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…