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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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)…
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…
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…
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…
November 06, 2024
The recording is also available on our YouTube channel.
November 05, 2024
The recording from our Genetics Centre of Excellence webinar is now available to view below and on our YouTube channel.
October 23, 2024
Ahead of our Annual General Meeting on Wednesday 30 October, we have launched our 2023-24 Annual Report & Accounts.
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…
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…
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…
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…
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,…
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…
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…
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…
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.…
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…
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…
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…
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,…
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…
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…
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…
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)…
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…
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…
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…
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…
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…
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…
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…
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…
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;…
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…
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…
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…
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,…
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…
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…
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…
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)…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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,…
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…
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.…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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 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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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.…
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…
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…
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…
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…