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February 04, 2025
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…
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
We're delighted to announce Max Wilkinson MP as our latest Parliamentary Champion!Max met with our Chief Executive, Sonya, following his local work with Cheltenham ME People to learn…
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 13, 2024
This #FundraisingFriday we're celebrating the successes of the Ink Cartridge Recycling Scheme!In particular, we wanted to say a huge thank you to Danny Redhead, the Winterton and District…
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 06, 2024
** Trigger warning - upsetting content **The Times: "NHS to review ME services after death of Maeve Boothby O’Neill"Andrew Gwynne and NICE have committed to improve patient outcomes…
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 28, 2024
There is a city nearby that we hide from view. Its people are of all ages, ethnicities and classes. What unites them is a disease: all are diagnosed with myalgic encephalomyelitis,…
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 21, 2024
Today is Carers Rights Day, and this year’s theme is recognising your rights. If you are one of the 5.8 million unpaid carers across the UK, Carers UK offers comprehensive information…
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 14, 2024
Every year, we challenge children, young people and adults across the UK to get Christmassy and creative. Any art medium can be used, from pens and pencils to digital tools, or macrame…
October 14, 2024
On Saturday, our Chief Executive, Sonya had the pleasure of hosting Stuart Murdoch’s book launch of his autobiographical novel, Nobody’s Empire. The experiences of Nobody’s Empire’s…
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 27, 2024
** Trigger warning - upsetting content **Evidence hearing summaryToday, during an evidence hearing in the Inquest into the tragic death of Maeve Boothby O’Neill, the Exeter Coroner’s…
September 20, 2024
In a recent InterAction article, we spoke to Scottish singer-songwriter Stuart Murdoch about his journey with ME, which he shares in his new book, Nobody's Empire. Speed read Stuart…
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 10, 2024
This week is Remember A Charity Week, which runs from 9 to 15 September. Remember A Charity Week provides an opportunity for everyone to take a moment to consider leaving a gift to…
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 20, 2024
Update: our AGM has been postponed and will now take place 3pm - 4pm, 30 October.To register, please use this link.You are invited to our 2024 Annual General Meeting (AGM) where you…
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
**Trigger warning - contains sensitive content**On Monday 29 July, Action for M.E.'s CEO Sonya Chowdhury, and professor Chris Ponting, were featured on BBC Scotland The Nine as they…
July 30, 2024
**Trigger warning - assisted dying, death** We are using this page to provide media updates on the story of Edina Slayter-Engelsman, who had severe ME, and returned to the Netherlands…
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 23, 2024
** Trigger warning - upsetting content, death ** We are using this page to provide media updates on the inquest into the death of Maeve Boothby O'Neill, who had severe ME and tragically…
July 22, 2024
** Trigger warning - upsetting content **From the article:A woman with ME wrote to her GP pleading for help to “get enough food to live” and expressing despair at not getting the care…
July 22, 2024
The Neurological Alliance have launched their 2024 My Neuro Survey!What is the My Neuro Survey1 in 6 people have a neurological condition – a condition that affects the brain, spine…
July 22, 2024
**Trigger warning: upsetting content**Action for M.E. CEO, Sonya Chowdhury, recently spoke to Alexis Conran on The Times Radio about the delays to the release of the Delivery Plan on…
July 20, 2024
Ahead of the landmark inquiry into the death of Maeve Boothby O'Neill, Sajid Javid, former MP and Health Secretary has called for Labour finish the work he began in 2021-22, stating…
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…
June 10, 2024
We are currently working on our organisational response to the Government's health and disability Green Paper, 'Modernising support for independent living', to ensure that the voices…
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 28, 2024
The UK Clinical Research Collaborative (UKCRC) Research Working Group on ME/CFS has launched its 'Researcher Toolkit'.Government funders of research in ME, academic researchers, and…
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…
May 17, 2024
Yesterday, our Chief Executive, Sonya Chowdhury, met with the Minister for Disabled People, Health and Work, Mims Davies MP, to discuss the recently announced consultation on PIP reform…
May 17, 2024
This #FundraisingFriday we are celebrating our amazing team of runners who ran the TSC London Marathon last month.Together, they have raised an astonishing £34,819 to support our work!We…
May 16, 2024
Essays on ME/CFS by medical students at universities in Edinburgh, Dundee and St Andrews have been selected as the winning entries in the 2024 Learn about ME essay competition in Scotland,…
May 14, 2024
In the early hours of World ME Day, Sunday 12 May, Led by Joe Lyons, CEO of West Ham United Foundation, three teams reached the summit of Snowdon, completing their staggering challenge,…
May 13, 2024
PrecisionLife and Metrodora Institute have launched new clinical trials, in the United States (US), to accelerate the diagnosis and treatment of ME/CFS and Long Covid patients.Up to…
May 10, 2024
Lee McGill (Department of Health & Social Care) joined the Research Working Group today to share an update on the Delivery Plan. We were pleased to hear there has been considerable…
May 10, 2024
Ahead of World ME Day 2024, Sir Sajid Javid MP has written an article in The Times, stating: "People with ME have been ignored for far too long."Sir Sajid also goes on to say: "Since…
May 08, 2024
This Sunday 12 May, on World ME Day, the Hertfordshire, Support Group will be hosting a day of free activities at St Albans Museum + Gallery including live music, poetry readings, and…
May 03, 2024
This World ME Day, we are supporting the World ME Alliance in becoming a #GlobalVoiceForME.ME is a global health crisis and we must therefore collaborate across the world to combat…
May 01, 2024
Video Update from our CEOFollowing the Westminster Hall debate held on Wednesday 1 May 2024, ahead of World ME Day, our Chief Executive, Sonya Chowdhury provided the following video…
May 01, 2024
Join champion fundraiser Anna Redshaw and Action for M.E. on Sunday 19 May to celebrate the Blue Sunday Tea Party for M.E. 2024! Enjoy a day of tea and cake, whilst connecting with…
April 30, 2024
The Department for Work and Pensions (DWP) has published plans to make the disability benefits system 'fit for the future' in a new Green Paper which explores the reform of the Personal…
April 26, 2024
We are delighted to announce that Sir Sajid Javid MP will be leading a Westminster Hall debate in the Houses of Parliament on Wednesday 1 May, taking place from 16.30 - 17.30.Ahead…
April 25, 2024
We’re delighted that Jacob Wilson, Founder and Master Distiller of The Henley Distillery, has joined Joe and Sav on our Action for M.E. team taking on the National Three Peaks Challenge!Jacob…
April 22, 2024
Action for M.E. is delighted to announce a new partnership with The Henley Distillery, an award winning company distilling gin, rum and other spirits based in Henley-on-Thames, Oxfordshire.We…
April 10, 2024
This week we are celebrating the incredible Brian McNestry, who recently took on the Brighton Marathon!Brian was running for his partner, Charlotte, who has lived with ME for over two…
April 09, 2024
StatementAction for M.E. is again saddened and concerned to see further reports relating to the concerning treatment of Millie and others with severe ME in hospitals and the lack of…
April 04, 2024
Channel 4 News speaks to Jo, a participant of DecodeME, the world's largest genetic study of ME.Jo discusses the devastating impact that ME has had on her's and her family's lives,…
April 04, 2024
In tonight’s segment on ITV Granada, our CEO, Sonya Chowdhury, speaks to Joshua Stokes about the lack of specialist services for ME."We sent out a freedom of information request to…
April 04, 2024
On Saturday 11 May, and finishing on World ME Day, a courageous team of Hammers will be attempting to conquer the National Three Peaks Challenge whilst also attempting to raise a collective…
April 03, 2024
Reporter, Joshua Stokes, speaks to Thomase Cleator, a farmer from the Isle of Man, who has lived with ME since the age of 12.“In a sense, I will always say in stole my childhood.Some…
April 01, 2024
Action for M.E. is pleased to offer a short, facilitated, online Mindfulness session in April for adults with M.E., intended to complement other self-management tools, as part of our…
March 28, 2024
We were delighted to see John McDonnell MP presenting himself as an Action for M.E. Parliamentary Champion in a Westminster Hall debate on Tuesday 26 March.In support of a motion raised…
March 20, 2024
Music artist, Steffan Price, A.K.A. Stavrin, has released a new single ‘Have You Tried Yoga’.The song is now available on Spotify and major streaming services for 99p, with all proceeds…
March 11, 2024
Sonya Chowdhury, CEO of Action for M.E. and Co-chair of the World ME Alliance, and Sian Leary, Head of Advocacy and Communications at the World ME Alliance, have been invited to speak…
March 06, 2024
The Nursing Times describe the “dire” state of ME/CFS services in Scotland, following the death of specialist nurse, Keith Anderson. The article discusses the lack of specialist…
March 05, 2024
Ahead of the upcoming Spring Budget, Labour MP for Hayes and Harlington, John McDonnell, calls on the Chancellor to address the lack of funding for M.E. research and for the Government…
March 01, 2024
It’s #FundraisingFriday! This week we’re celebrating Izzy who is running the Barcelona Marathon on March 10, on behalf of her close friend Sasha, who has M.E. Izzy has already raised…
February 26, 2024
The Sunday Post have released an article discussing the lack of support available to people with M.E. in Scotland.The article tells the story of Stuart Brown, a research scientist who…
February 07, 2024
As we approach World ME Day on May 12th, 2024, Action for M.E. joins the global community in shedding light on the pressing issues surrounding Myalgic Encephalomyelitis (M.E.). This…
February 02, 2024
We're delighted to announce that Jeff Banks has joined Action for M.E.'s Board of Trustees.Speaking on his appointment, Jeff said:“I am honoured to have been appointed a Trustee of…
February 02, 2024
Action for M.E. are delighted to announce that Baroness Scott of Needham Market has joined our Parliamentary Champions network!Baroness Scott will working with our champions, Fleur…
January 30, 2024
Action for M.E. was very concerned to see the quote provided in the Daily Mail attributed to our medical adviser, Professor David Strain. David who has asked us to issue the following…
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