News

Jo Platt MP - Health and Social Care oral questions

January 14, 2025

Great to see Jo Platt MP ensuring people with ME and long Covid remain a priority for the Government as part of the NHS reforms.Jo, who is one of our Parliamentary Champions and Chair's…

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APPG on ME is now formally registered

December 20, 2024

On Tuesday evening, the inaugural meeting of the All-Party Parliamentary Group was held and we're pleased to announce that the APPG on ME is now formally registered!Jo Platt MP was…

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2024/25 Christmas office closure

December 18, 2024

Our office will be closed over the festive break from Monday 23 December to Monday 06 January 2025.This means you will be unable to access our Information, Support, Advocacy, and Healthcare…

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'Activity Trap' research - get involved!

December 18, 2024

People with ME/CFS are invited to share their experiences of applying for welfare benefits as part of a research project led by Durham University and Disability Rights UK.Lead researcher…

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SequenceME: first of a kind genetic study

December 16, 2024

A groundbreaking partnership has launched today.The partners are working together to secure funding for a study which will analyse the entire genetic code of up to 17,000 people with…

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Big Give 2024 - educating medical professionals on ME

December 07, 2024

62% of people surveyed say they are not confident that their GP understands ME and there is a huge gap in specialist healthcare services, with many people having to look outside of…

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The Big Give Christmas Challenge is back!

December 04, 2024

In case you missed it!Our Big Give Christmas Challenge 2024 has arrived and from 3 - 10 December, gifts made through our campaign page will be DOUBLED!This year, we have been given…

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APPG on ME - December 2024

December 02, 2024

We are delighted to announce that Jo Platt MP has agreed to be put forward to Chair the All-Party Parliamentary Group (APPG) on ME.The APPG's inaugural meeting is also confirmed to…

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Christmas eCard competition - winners announced

November 29, 2024

Congratulations to the winners of our 2024 Christmas eCard competition!We’re thrilled to announce the talented winners of this year’s Christmas eCard competition!Your incredible creativity…

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Mindfulness for people with ME/CFS and their carers

November 21, 2024

Since April 2024, Action for ME volunteer Alice Muskett has been offering free online Mindfulness workshops for people with ME/CFS and carers. Alice is trained as an accredited Mindfulness…

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Nobody's Empire: Online book launch

November 20, 2024

Join us for an online webinar on Tuesday 26 November, from 5pm - 6pm, with Stuart Murdoch as he launches his new novel, Nobody's Empire!After a successful in-person tour, Stuart has…

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Parliamentary Question: Support for ME and long Covid

November 18, 2024

Tim Roca (Labour, Macclesfield) has asked a written question: To ask the Secretary of State for Health and Social Care, what steps he is taking to provide support for people with (a)…

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#FundraisingFriday: Danny Redhead

November 15, 2024

This week, we’re celebrating the incredible Danny Redhead who, to date, has raised an almost unbelievable total of £18,000 to support our work!Danny celebrated his 30th birthday but…

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Our use of 'X'

November 15, 2024

What we are doingAction for ME will be ceasing use of social media channel ‘X’ (formerly known as Twitter). The current account will remain as a dormant account. This will free up resources…

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November 2024 update: British Psychological Society

November 12, 2024

The British Psychological Society, in collaboration with Action for ME and the ME Association, is developing guidelines for psychologists working with individuals with ME/CFS. It is…

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Watch our 2024 Annual General Meeting (AGM)

November 06, 2024

The recording is also available on our YouTube channel.

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Genetics Centre of Excellence webinar recording

November 05, 2024

The recording from our Genetics Centre of Excellence webinar is now available to view below and on our YouTube channel.

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Our 2023-24 Annual Report & Accounts

October 23, 2024

Ahead of our Annual General Meeting on Wednesday 30 October, we have launched our 2023-24 Annual Report & Accounts.

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Learn about ME webinar for GPs: watch now

October 14, 2024

Dr Nina Muirhead and Dr Robin Kerr led a free Learn about ME webinar for GPs on Thursday 26 September. Nina is a Dermatology Surgeon in Buckinghamshire, with a personal and professional…

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Reg 28 Prevention of Future Deaths report issued

October 07, 2024

The ReportToday the Coroner of the inquest held into Maeve Boothby O’Neill’s death, issued a Regulation 28: Report to Prevent Future Deaths. The Coroner outlines her opinion that action…

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Genetics Centre of Excellence Webinar

October 04, 2024

On 24 October, from 2 to 3 pm, Action for ME are hosting a webinar about the recent activities of the Genetics Centre of Excellence.The event will feature:An update from Sonya Chowdhury…

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An update on the APPG for ME

October 02, 2024

Action for ME and the ME Association are keen to continue providing joint secretariat for a new All-Party Parliamentary Group (APPG) on ME. Since the election, we have been engaging…

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Three new Parliamentary Champions announced

October 01, 2024

We're delighted to announce Lord Bethell (Conservatives), Monica Harding MP (Liberal Democrats) and Steve Race MP (Labour) as our latest Parliamentary Champions. Speaking on his announcement,…

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Our CEO, Sonya Chowdhury meets with Steve Race MP

September 17, 2024

Our CEO, Sonya, was delighted to meet with Steve Race MP earlier today and we would like to thank him for giving us some of his time. During the meeting, they discussed topics such…

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AGM rescheduled to Wednesday 30 October

September 16, 2024

Our 2024 Annual General Meeting (AGM) has been rescheduled for 3pm – 4pm, Wednesday 30 October.We will automatically re-register anyone who had registered for the previous date and…

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We're calling on the UK Government to 'Act for ME'

September 16, 2024

With the recent changes in Government, we have reviewed and updated our ‘Manifesto for ME’- now ‘Act for ME’. We have shared the updated document with all MPs, asking them to pledge…

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International Literacy Day: your favourite writings

September 08, 2024

Every year on 8th September, celebrations of International Literacy take place cross the world. Having started in 1967, it’s an annual reminder of the importance of literacy in society.…

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British Psychological Society: Guidelines for ME/CFS

September 03, 2024

The British Psychological Society is working with people with ME/CFS, Action for M.E. and the ME Association to produce good practice guidelines for psychologists working with people…

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Care & Support Plan - our response to raised concerns

September 03, 2024

Following the announcement of the Care and Support Plan template, developed in collaboration with people with ME, and Dr Pete Gladwell of the Bristol Specialist ME Service, a number…

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The Guardian: Maeve Boothby O'Neill Inquest Conclusion

August 12, 2024

** Trigger warning: upsetting content, death **In a recent article, The Guardian discusses the "harrowing" inquest into the tragic death of Maeve Boothby O'Neill, covering the Coroner's…

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Maeve Boothby-O'Neill inquest findings

August 09, 2024

** Trigger warning - upsetting content, death **Today marked the conclusion into the tragic death of Maeve Boothby O'Neill, who had severe ME, in October 2021.Over the past two weeks,…

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New online learning for GPs on severe ME

August 08, 2024

Action for M.E. is inviting GPs and other health professionals to test their clinical knowledge of severe ME via a new resource on the Learna website, produced by Dr Nina Muirhead.This…

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Labour commits to publish full Delivery Plan on ME/CFS

August 08, 2024

Statement by Andrew Gwynne MP, Parliamentary Under-Secretary of State for Public Health and Prevention. In response to concerns from the ME community relating to the publication of…

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Severe ME Day 2024

August 05, 2024

08 August 2024 marks Severe ME Day.Severe ME Day was originally founded by the 25% ME Group and has since been honoured as a day dedicated to people with severe and very severe Myalgic…

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Health and Disability Green Paper: Our Response

July 30, 2024

After working with and receiving valuable feedback from the community, Action for M.E. have submitted a response to the consultation on the Department for Work and Pensions (DWP)…

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#ThereForME campaign

July 23, 2024

#ThereForME is a new campaign led by patients and carers calling for an NHS that’s there for people with ME and Long Covid. The new Labour Government has come into office with a powerful…

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Henley Distillery Open Day raises over £3.5k

July 12, 2024

This #FundraisingFriday we’re celebrating the wonderful people at The Henley Distillery!They opened their doors on Sunday 30 June to host an open day, raising over £3,500 to support…

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Update on the APPG on ME

July 11, 2024

Following the general election, Action for M.E. and the ME Association have provided the following update, as joint-Secretariat for the All-Party Parliamentary Group on ME.“We understand…

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APPG on ME Update - Carol Monaghan

July 05, 2024

Carol Monaghan, previously Chair of the All-Party Parliamentary Group on ME and MP for Glasgow West, has lost her seat in the general election.As joint-Secretariat for the APPG, we…

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#FundraisingFriday - 'A Walk for M.E.' Lee Colligan

July 04, 2024

Back in a June #FundraisingFriday, we celebrated the amazing Lee Colligan who is walking around Ireland’s West Coast and Northern Ireland’s North Coast to raise money and awareness…

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New Patrons announcement

May 30, 2024

We’re delighted to formally announce our two newest Patrons, Sarah Dorin and Philip Mould OBE.Both Sarah and Philip have experienced the devastating effects that ME can have on people’s…

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New advocacy resource for people with ME in hospital

May 30, 2024

In response to increasing requests for advocacy support from people with ME/CFS in hospital, including those more severely affected, 25% M.E. Group, Action for M.E., Blue Ribbon for…

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General election - what happens now?

May 23, 2024

We are aware the general election causes concern for many people within the ME community in relation to the progress of the Delivery Plan.We have been assured on numerous occasions…

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Learn about ME and Occupational Therapy podcast

May 22, 2024

Our latest Learn about ME explores a much more preferable person-centred approach, sharing insight and experience from Katie Davies, Occupational Therapy Team Lead in NHS Grampian;…

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DWP's treatment of ill & disabled people investigated

May 22, 2024

Britain’s human rights watchdog is formally investigating the Department for Work and Pensions (DWP) over its treatment of chronically ill and disabled people. The inquiry will focus…

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APPG on ME - Severe ME Inquiry

May 21, 2024

The All-Party Parliamentary Group on ME (APPG) has launched its inquiry into Severe ME.Action for M.E., the ME Association, and the 25% M.E. Group will be working closely to support…

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Breakthrough-ME: our plan to rapidly grow research

March 15, 2022

Despite the devastating impact of M.E., understanding of the disease is still woeful. While at least 1.3m people live in the UK with ME or ME-like symptoms, including post-exertional…

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Be part of M.E. Research

October 25, 2021

The ME/CFS Priority Setting Partnership (PSP) is giving you the opportunity to define your top ten priorities for future ME/CFS research. In partnership with the James Lind Alliance,…

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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…

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Action for M.E. in the news

August 25, 2021

In the three weeks since our press briefing to journalists, we’ve received an unprecedented amount of coverage from all kinds of news outlets. Our intention from the briefing was to…

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Dr David Strain on M.E. & long term impact of Long Covid

July 09, 2021

With Covid-19 restrictions lifting later this month, our medical advisor Dr. David Strain warns about the long-term threat Long Covid poses to young people - drawing comparations with…

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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)…

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Captain Tom 100: do it your way

April 15, 2021

London Marathon Events have teamed up with the Captain Tom Foundation to host the Captain Tom 100, a sponsored event to celebrate Captain Tom’s life and raise vital funds for charities…

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​DecodeME webinar on Thursday 15 April

April 07, 2021

On Thursday 15 April, from 6.00-6.45pm, the DecodeME Management Group will be hosting a live Q+A webinar on the DecodeME Facebook page. The webinar will focus primarily on the recruitment…

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NICE guideline delayed until August 2021

March 30, 2021

The National Institute for Health and Care Excellence (NICE) emailed stakeholders yesterday to let us know there will be a delay in the publication of its new guideline for diagnosing…

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May elections: contact your candidate about M.E.

March 29, 2021

Many areas across the United Kingdom have now entered a time of political purdah – the name given to the time between when an election campaign officially starts and when the vote is…

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Get involved with the Last Photo Challenge

March 26, 2021

The ever supportive and creative Danny Redhead is back with his latest fundraising idea - the #LastPhotoChallenge. Danny (pictured centre), who we’ve featured a number of times due…

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National Day of Reflection

March 23, 2021

While lockdown may be ending soon for many across the country, thousands of people with M.E. have been in lockdown for decades and will continue to live a life in lockdown even when…

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​Action for M.E. joins Long COVID Alliance

March 01, 2021

Action for M.E. has joined 50 international partner organisations to form the Long COVID Alliance, an organisation with aims to educate policy makers and accelerate research to transform…

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More than 1,000 survey responses: add yours now

February 25, 2021

More than 1,000 people have so far completed a survey which researchers from the University of Cardiff hope will help better inform healthcare workers about the needs of families and…

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Clare talks M.E. on BBC Radio Tees

February 24, 2021

This morning, our Services and Communications Team Leader, Clare Ogden, appeared in place of CEO Sonya Chowdhury on the Neil Green show on BBC Radio Tees to discuss M.E. and the lack…

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Sonya interviewed on BBC Radio Tees

February 23, 2021

Last week, the All-Party Parliamentary Group on Coronavirus called for Long Covid to be recognised as an occupational disease for frontline health and care workers."The long-term consequences…

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CPD module to assist health professionals

February 18, 2021

“Imagine feeling viral, exhausted, unwell and in pain, confined to your bed or house, lying in a dark room for years or even decades. The world has been shocked by the damage that viruses…

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Guardian article on Covid priority groups

February 15, 2021

“Sonya Chowdhury, the chief executive of Action for ME, said she was shocked that the condition (M.E./CFS) had been left out of category 6… Even mild viruses can cause flare-ups and…

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Join our UK-wide self-advocacy workshop

February 11, 2021

Following the success of our recent advocacy workshops for people in Bath and North East Somerset, we’re pleased to announce that we will repeat the workshop for people across the UK…

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Apply for your London Marathon 2021 place

February 05, 2021

“It means a great deal to myself, to Laura (Joe’s partner who has M.E.) and to the thousands of people who deal with this illness every day.” – Joe, who took part in the 2020 virtual…

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DBC report: the pandemic and legacy benefits

February 03, 2021

The Disability Benefits Consortium (DBC), a group made up of over 100 charities including the MS Society, Parkinson’s UK, and ourselves, has published a report on how the pandemic has…

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Join our free self-advocacy workshop

January 29, 2021

Following the success of our free online self-advocacy workshops in 2020, we’re pleased to announce that we will host more in February and March.Led by our experienced Advocacy Officers,…

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Bath Half Marathon 2021

January 18, 2021

This year’s Bath Half Marathon is taking place on Sunday 5 September, with half the number of participants to adhere to social distancing measures. We're calling for people to run…

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M.E. referenced in House of Commons Long Covid debate

January 15, 2021

A Long Covid debate was held yesterday in the House of Commons during which MPs highlighted M.E. and called for lessons to be learned from the illness when treating Long Covid patients.…

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NICE rapid response guideline on Long Covid

December 18, 2020

NICE has published its COVID-19 rapid guideline: managing the long-term effects of COVID-19. Developed jointly by NICE, the Scottish Intercollegiate Guidelines Network and the Royal…

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​Minister hears about issues facing people with M.E.

December 17, 2020

On Wed 16 Dec, as members of the Regional Stakeholder Network for Disability, Action for M.E. attended a roundtable discussion with Justin Tomlinson MP, Minister of State for Disabled…

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Forward-ME call for NICE guideline warning

December 10, 2020

The Forward-ME group has called for a health warning to put added to the existing NICE guideline for M.E. to limit potential damage through graded exercise therapy (GET). This comes…

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Best Patient Support award for Action for M.E.

December 08, 2020

We are pleased to announce that Action for M.E. has been named Best Patient Support Charity at the 2020 SME Southern Enterprise Awards.The annual Southern Enterprise Awards recognise…

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The Big Give 2020 is underway!

December 01, 2020

The Big Give Christmas Challenge 2020 is officially underway!Throughout our Big Give Christmas Challenge, from noon today to noon on Tuesday 8 December, all donations to us via the…

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This Big Give, help us support people like Alex

November 27, 2020

“I’m Alex, I’m 11 years old, and I’ve had M.E. for 2 and a half years. I’m mainly housebound/bedbound, a lot of people don’t understand M.E. and how one day you can look “healthy” and…

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​M.E. and Covid-19 vaccine: your questions

November 23, 2020

For up-to-date information on the vaccine, including a template letter highlighting that M.E. is an underlying neurological condition that should be in priority group 6, please visit…

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Fundraiser of the week: birthday fundraiser Lizzy

November 20, 2020

“It absolutely made my birthday, knowing that this would in turn help lots of other people, especially in such a difficult year.” Our fundraiser of the week is Lizzy, whose birthday…

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CEO Sonya talks M.E. on BBC Radio Bristol

November 19, 2020

Our CEO Sonya Chowdhury appeared on BBC Radio Bristol’s mid-morning show with John Darvall on Thursday 19 Nov. On the show, Sonya discussed the draft NICE guideline for M.E. that was…

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​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…

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Fundraiser of the week: the ChallengeME team

November 06, 2020

“Their response has been overwhelming, with challenges including a 50-minute family disco dance, 50km walks and Hiking along the Yangtze River!” Emma and her team, who are undertaking…

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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…

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Key information following lockdown announcement

November 02, 2020

Following Saturday’s announcement that England is set to go into a second lockdown from Thurs 5 November until Wed 2 December, it’s understandable that you may have a range of concerns…

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​Join our Breaking Isolation workshops

October 26, 2020

Funded by BBC Children in Need, our Breaking Isolation project is being co-designed and delivered by young people with M.E. The three-year project will see our steering group come…

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​Join us for #DADvirtual on Sunday 25 October

October 19, 2020

To raise awareness of M.E. and the burden it places on the lives of over 250,000 people in the UK, Action for M.E. will be taking part in the Virtual Disabilities Awareness Day event…

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Knighthood for Professor Stephen Holgate

October 12, 2020

Professor Stephen Holgate has been knighted for services to medical research in the 2020 Queen’s Birthday Honours List. Stephen, who works as ‘Medical Research Council Clinical Professor…

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Fundraiser of the week: our virtual London Marathon team

October 09, 2020

On a miserably rainy Sunday last weekend, not only did Joe, Steve, David, Jeanette, Phil and Sophie decide to head outside, they took part in the Virgin Money London Marathon: The 40th…

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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…

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Fundraiser of the week: Danny and his ink cartridge initiative

October 02, 2020

Our fundraiser of the week is Danny, who has collaborated with his local GP surgery to raise funds for Action for M.E. Through Recycle4Charity scheme, Danny has set up ink cartridge…

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Learn more about the winter flu jab

October 01, 2020

If you’re unsure about what events this year have meant for getting your flu vaccine this winter, consider checking out our ‘Winter flu jab’ page on our website setting out information…

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Check out Astriid's latest 'ME in the workplace' webinar

September 29, 2020

This National Inclusion Week, we’re pleased to be supporting specialist employment charity Astriid, hosting a second 'ME in the workplace' webinar following the success of their first…

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Disability tax update

September 24, 2020

The Chancellor has announced that there will no longer be an Autumn Finance Statement, within which there had been proposals to introduce a new tax on online shopping. The proposed…

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Useful resources following yesterday’s Covid-19 restrictions

September 23, 2020

With yesterday’s announcement about new UK restrictions relating to Covid-19, we know lots of you may be feeling concerned, let down and frustrated. While for many with M.E., lockdown…

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Fundraiser of the week: Andrew Maybury

September 11, 2020

Our fundraiser of the week, Andrew Maybury, is taking part in the Great North Run Reimagined on Sunday.It’s a challenge that the majority of people with M.E. would be unable to even…

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Fundraiser of the week: Emily's Yorkshire Three Peaks team

September 04, 2020

Our fundraiser of the week is Emily and her team of Masie, Sacha and Kathryn, who walked, climbed, and scrambled the Yorkshire Three Peaks Challenge together on 25 August in support…

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​Join Astriid's 'Balancing work with M.E./CFS' webinar

September 02, 2020

This summer, we have been in conversation with Astriid, a specialist employment support charity. We are delighted to now be working with them to grow their new Community for M.E./CFS.…

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Fundraiser of the week: our RideLondon participants

August 28, 2020

“My Dad and I chose a lovely sunny morning last week to ride, taking a nice long loop around the canal and we even threw in a hill or two!” – Josh, Action for M.E. Fundraising Officer…

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Fundraiser of the week: Skydiving Janice

August 21, 2020

“M.E. has affected my family for several years… I’ve seen first-hand how M.E. can affect people and more awareness is needed.” Our fundraiser of the week is skydiving Janice, who…

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Join our free online self-advocacy workshops

August 19, 2020

Following the success of our free online self-advocacy workshop in July, we’re pleased to announce that we will repeat the workshop in September and October.Led by our experienced Advocacy…

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Fundraiser of the week: raffle ticket-selling Catherine

August 14, 2020

Our fundraiser of the week is Catherine, thanks to her impressive raffle ticket-selling exploits. Catherine, whose husband has M.E., raised an incredible £320 selling raffle tickets…

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