News

Action for M.E. announce a second ground-breaking PhD

June 17, 2022

Action for M.E. is delighted to announce a second ground-breaking PhD, this time in conjunction with the University of Oxford. This comes shortly after announcing our jointly funded…

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Action for M.E. & ME Research UK launch pioneering PhD-level research

June 17, 2022

Action for M.E. and ME Research UK are delighted to announce the launch of a new ground-breaking PhD-level research project in conjunction with King’s College London. This collaborative…

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Our call for a Recovery & Respite Plan for Unpaid Carers

June 10, 2022

As this week is Carers Week, there has never been a more important time to recognise, value and support the thousands of individuals caring for their loved ones. This is particularly…

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Listen to M.E. launches

May 19, 2022

Are you feeling lonely? Want to talk to someone who understands M.E.? Our new project, Listen to M.E., aims to help adults affected by M.E. feel less isolated. Our fully trained…

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Transforming lives on World M.E. Day

May 12, 2022

Action for M.E. welcomes the Department of Health and Social Care’s pioneering statement on Myalgic Encephalomyelitis (M.E.) on the first ever World M.E. Day.Ministers set out plans…

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Putting the ME/CFS guideline into practice

May 12, 2022

Today marks the first World M.E. Day and we are pleased to see National Institute of Health and Social Care Excellence (NICE) have outlined the steps needed to put the guideline for…

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Secretary of State supports the M.E./CFS PSP priorities

May 12, 2022

Over the past two years, we have been working with the M.E. community to find out the research priorities that matter most. By asking those with lived experience, carers and clinicians…

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Shaping our future together: our call for a national strategy for M.E.

May 05, 2022

As we approach the World ME Day on 12 May, we launch Action for M.E.’s new five-year strategy, Shaping our future together. We also have a simple-text version. Developed in partnership…

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Take Action! What should the world #LearnFromME?

May 05, 2022

There is only a week to go until World ME Day on the 12th of May, and as part of this year’s theme, #LearnFromME, the World ME Alliance has released a series of actions to help make…

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World ME Day custom poster maker goes live

April 28, 2022

What will you create?The ME community is particularly incredible in one way – it is active and engaged. This has partly from come from necessity – people with ME have had to speak out…

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Warm Home Discount denied to thousands with disabilities

April 21, 2022

With energy bills rising 14 times faster than wages, households this winter are predicted to see a fall in real-wage income by nearly £1,000. British Gas further estimates that energy…

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Blue Sunday 2022 - The Tea Party for M.E.

April 19, 2022

After an amazing year in 2021, raising over £20,000 for M.E. charities across the world, champion fundraiser Anna Redshaw is inviting you to take part in her Blue Sunday Tea Party 2022,…

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Do you have severe M.E. or care for someone who does?

April 13, 2022

Do you have severe M.E. or care for someone who does? The latest edition of Severe ME/CFS: A Guide to Living is now available. Published in 2010, this invaluable book was written…

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What should the world #LearnFromME?

April 04, 2022

ME is a global health crisis – up to 30 million people are living with this disease worldwide, and when we take into account the effect on families, carers and friends too, the impact…

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Lifting of Covid restrictions today

April 01, 2022

Responding to the lifting of the Covid restrictions today (1 April), Action for M.E.’s Ruth Richardson, Director of Business Support and Development said:“For many people with M.E.…

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Did you attend the Learn about M.E. webinar?

March 30, 2022

Were you one of the many who attended the Learn about M.E. Social Care webinar on M.E./CFS & Long Covid? If you were unable to attend, you will be pleased to know that we have shared…

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

March 16, 2022

The Annual General Meeting (AGM) of the All-Parliamentary Party Group (APPG) on M.E. has been set for Tuesday 29 March 10:00 – 10:30 via Zoom. As always, we’re encouraging you to invite…

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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 250,000 people live with M.E., and even more experiencing overlapping symptoms with…

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Join our online Breaking Isolation three-part workshop

March 04, 2022

Funded by BBC Children in Need, our Breaking Isolation project - which began in 2020 - brings together a steering group to design and deliver a series of isolation-busting workshops…

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Join our online self-advocacy workshop

March 01, 2022

You are invited to join us for a Self-Advocacy workshop online via Zoom live on Friday 18th March 2022 12:30 pm-2:30 pm hosted by our team of Advocacy officers. The workshops will…

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World M.E day launches with first year theme announced

February 28, 2022

The World ME Alliance, a collaborative of organisations from across the globe, is launching World ME Day on 12th May this year. This new initiative aims to bring together organisations…

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Living with M.E. - A photographic study

February 24, 2022

Would you like the opportunity to share your story about what it is like to live with M.E. through a photograph? Photographer and film maker, Jeremy Jeffs, is launching an inspirational…

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Informing professional practice - Learn about M.E. Webinar

February 22, 2022

Action for M.E. is hosting a webinar on M.E./CFS (Myalgic Encephalomyelitis or Chronic Fatigue Syndrome) for anyone working in social care or social work at 1:30 on Thursday 17th of…

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Launch of our Action for M.E. Healthcare Services

February 01, 2022

We have now completed our merger with The ME Trust and from Tuesday 1 February 2022 will be offering Healthcare Services in addition to our Information, Support & Advocacy Services.…

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Our merger with the ME Trust - date confirmed

January 21, 2022

In September 2021 we announced our decision to merge with The ME Trust following a process of due diligence started in June, and after consulting with key stakeholders of both charities.…

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We were on ITV Celebrity Catchphrase

January 20, 2022

We were honoured to see Scottish actor Mark Bonnar appear on ITV’s popular game show Celebrity Catchphrase playing for Action for M.E last weekend. Mark is known for his roles as Max…

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Christmas e-card competition

December 17, 2021

Over the past few weeks, we have been collecting design entries for our Christmas e-card competition. We are delighted to announce that Jen was voted the winner for the competition,…

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Apply to join the M.E./CFS priority setting workshops

December 16, 2021

Over 2,000 people with M.E./CFS, carers and health professionals in the UK engaged with the recent survey from the M.E./CFS Priority Setting Partnership. Through three stages of participation,…

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Last chance to enter your research priorities

December 09, 2021

The M.E./CFS Priority Setting Partnership (PSP) is giving you the opportunity to define your top ten priorities for future M.E./CFS research.Over 1,700 people have now voted for their…

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Our new ambassador - Jennie Jacques

November 30, 2021

We are delighted to welcome actor Jennie Jacques as an Action for M.E. Ambassador. Jennie Jacques is a British actor who came to fame in the drama Desperate Romantics, which aired…

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My Favourite Voucher Codes Charity Poll

November 26, 2021

Nominate Action for M.E. in the My Favourite Voucher Codes Charity Poll this December and help us win 20% of the company’s profits!We are excited to announce that we are taking part…

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Vote for your ME/CFS research priorities

November 23, 2021

Over 1,000 people have now voted for their M.E./CFS research priorities. People with M.E./CFS, carers and clinicians are all asked to take part. The M.E./CFS Priority Setting Partnership…

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

November 15, 2021

The next All-Party Parliamentary Group (APPG) meeting for M.E. will take place Wednesday 24th November between 2pm-3pm. The meeting will focus on the new National Institute for Health…

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Descriptions project - Sharing M.E. Experiences

November 09, 2021

To shine a light on the difference in M.E. experiences, we want to invite you to describe your experience of the disease for a new art project. The responses will be collated by Alec…

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Teachers want to know how to support pupils

November 08, 2021

The Teachers Educational Supplement (TES) are the leading outlet for providing content, support, and resources for teachers throughout the United Kingdom at the start of their career,…

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Christmas Card Design Competition

November 08, 2021

Do you like to be creative? With the festive season on the way, we are launching our Christmas e-Card Design Competition! You could do a drawing, painting, collage, digital drawing,…

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Merger update

November 03, 2021

On 17 September 2021, the Action for M.E. board announced a decision to merge with The ME Trust following a thorough review of the potential benefits to people with ME started in June,…

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NICE publish guideline

October 29, 2021

Action for M.E. is delighted, as are the other members of Forward-ME, to see the long-awaited guideline on diagnosing and treating M.E. be published by NICE. The publication follows…

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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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Clinician patient support confirmed for new NICE guideline

October 22, 2021

Statement from Forward-ME: On Monday, Forward-ME and member charities attended a round table to review the new ‘NICE guideline on ME/CFS’ with representatives from NICE and clinical…

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NICE round table: Forward-ME update

October 18, 2021

Update from Forward-ME on this afternoon’s roundtable event hosted by the National Institute for Health and Care Excellence (NICE) today. The event will aim to discuss key issues…

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GPs keen to learn about M.E. at conference

October 14, 2021

The Royal College of GP's annual conference is the must attend-event of the year for GPs and practice team colleagues, showcasing the latest clinical and policy developments across…

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NICE round table agenda now published

October 13, 2021

On Monday, Action for M.E. will attend a roundtable meeting hosted by the National Institute for Health and Care Excellence (NICE). NICE has invited representatives from a range of…

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Forward ME: upcoming NICE round table

October 11, 2021

Update from Forward-ME on the upcoming round table event, hosted by the National Institute for Health and Care Excellence (NICE) next Monday (18 October), to "discuss key issues raised…

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Honouring the life and work of Graham McPhee

October 07, 2021

We are deeply saddened to learn of the death of Graham McPhee, citizen scientist and champion for people with M.E./CFS. A former maths teacher, Graham took a forensic approach to…

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New name, renewed purpose: World M.E. Alliance

October 05, 2021

Formerly known as the International Alliance for M.E., the World M.E. Alliance has re-launched today with a new website and renewed purpose.There are two strands to its work:bringing…

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Honouring M.E. champion, Dr Richard Sykes

September 23, 2021

Action for M.E. is saddened to learn of the death of M.E. campaigner Dr Richard Sykes, aged 89 years. Based in Bristol, Richard founded Westcare in 1990, offering counselling services,…

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Scotland Self-Management Week: book now

September 23, 2021

Bringing people together to share learning, the ALLIANCE's Self-Management Week 2021 starts on Monday.Avril McLean, Action for M.E.'s Advocacy Senior Practitioner in Scotland, will…

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Forward Look webinar: send us your questions

September 22, 2021

Improving lives, inspiring action and investing in change: how can we do more and do better over the next five years? Our most recent annual report says: "We have asked ourselves: what…

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Reaching out to SENCOs and teachers

September 21, 2021

Special Educational Needs staff and other education professionals will hear about the impact of M.E., and how they can best support students, at nasen Live 2021 this week. Action…

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Action for M.E. to merge with the ME Trust

September 17, 2021

On 16 September 2021, the Action for M.E. board approved a decision to merge with The ME Trust following a process of due diligence started in June, and after consulting with key stakeholders…

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NICE guideline delay: David Tuller's letter

September 16, 2021

Action for M.E. is among more than 100 UK and international charities, organisations and support groups, alongside 150 scientific and clinical experts, who have co-signed a letter from…

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M.E. and Long Covid discussed on Times Radio

September 11, 2021

Last night, our Chief Executive Sonya Chowdhury and our Medical Adviser Dr David Strain appeared on Kait Borsay’s Times Radio Show to discuss M.E. and Long Covid. A recording of the…

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Answering your questions about our potential merger

September 09, 2021

Thank you so much to those that have shared the views, questions and concerns about the potential merger between Action for M.E. and The ME Trust. There is still time to let us know…

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Free self-advocacy workshop: book now

September 08, 2021

Would you like to share your experience and develop skills to advocate for your needs at work?Led by our experienced Advocacy Officers, our Self-Advocacy in Employment Workshop webinar…

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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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Forward-ME on NICE guideline roundtable

August 31, 2021

Last week, the National Institute of Health and Care Excellence (NICE) announced that, following the pause to the publication of it guideline on diagnosing and managing M.E./CFS, it…

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AGM 2021

August 25, 2021

You are invited to our 2021 AGM where you can meet Action for M.E. staff and Trustees, and hear how we've worked with and supported people with M.E. over the past financial year, along…

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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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M.E. featured on Woman's Hour

August 24, 2021

Today, BBC Radio 4’s Woman’s Hour programme featured a 13-minute segment on M.E. and Long Covid, as requested by multiple listeners as part of Listener Week 2021. The two guests were…

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NICE Guideline delay – What you can do

August 24, 2021

We understand that many people in the community may be angry or anxious because of NICE’s decision to delay publication of their new guideline. We have been working with other M.E./CFS…

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Essential website maintenance on 25 August

August 20, 2021

On Wednesday 25 August our server will be undergoing an essential upgrade to ensure our website continues to perform as effectively as possible, and keep any data you share with us…

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Guideline delay questioned on Today programme

August 18, 2021

Interviewed on BBC Radio 4’s Today programme this morning (listen again online from 07.53) our Chief Executive Sonya Chowdhury urged the National Institute for Health and Care Excellence…

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M.E. charities baffled by delay to NICE guideline

August 17, 2021

Statement on the delay to publication of the NICE guideline on diagnosis and management of M.E., on behalf of Forward ME, Action for ME, ME Association, Doctors for ME, and ME Research…

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New petition Equity for M.E. launches

August 04, 2021

Today we're launching a petition calling for the UK Governments to commit the same level of research funding and recognition to M.E. as we have seen with Long Covid. Hundreds of thousands…

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Action for M.E. and ME Trust exploring a merger

August 04, 2021

On 3 August 2021, the Action for M.E. board approved a decision to explore a merger with The ME Trust after a process of due diligence started in June. The ME Trust is a UK charity…

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ACT4ME launch July action

July 26, 2021

The Act4ME Network, which brings together people with M.E./CFS to amplify our voice and increase our influence, take part in a collective action once a month. For July, we have asked…

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NICE guideline for M.E.: three weeks to go

July 26, 2021

With just three weeks until the new NICE Guideline is published we are aware that many people with M.E./CFS may be feeling anxious about what is included. Since its consultation…

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New Health and Disability Green paper published by DWP

July 26, 2021

Last week the Department for Work and Pensions (DWP) published the Health and Disability Green Paper. During the past year we have been able to meet representatives of the DWP and Cabinet…

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Free workshops for 15 to 18 year olds

July 26, 2021

Supporting by BBC Children in Need, our free Breaking Isolation workshops are an exciting opportunity to meet other children and young people who have M.E., to get to know each other…

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Action for M.E. comment on Sunday Telegraph article

July 25, 2021

On Friday 23 July 2021, Action for M.E. was contacted by a journalist from The Sunday Telegraph and asked to provide comment on a complaint reportedly lodged with the Charity Commission…

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Walk with M.E. reaches half way point

July 21, 2021

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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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​Meet our new Medical Advisor, Dr David Strain

July 01, 2021

We’re excited to announce the appointment of Dr David Strain as our Medical Advisor.Dr Strain brings a wealth of clinical and academic experience to our charity, as Senior Clinical…

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Walk with M.E. 2021 has officially begun

June 23, 2021

Although we’ve got lots of teams and individuals signed up to take part this year, there’s always room for more. We’ll be running mini-competitions and raising funds and awareness…

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Two weeks to send in your research ideas

June 22, 2021

A major project is looking for your input. They want to know what research you think should be funded in the future, and the deadline for adding your ideas is fast approaching. Your…

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Letter to Sunday Times: Harmful Long Covid article

June 16, 2021

We were disappointed to read the unsubstantiated and harmful opinions of psychiatrist Jeremy Devine in The Sunday Times on 13/06/2021. We’re glad other experts disagreed with his views…

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Huge thank you to our amazing volunteers

June 04, 2021

This Volunteers Week, we want to say a huge thank you to every one of our volunteers who makes a real contribution to helping us support people with M.E.We are also hugely grateful…

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The difference you made this M.E. Awareness Month

June 02, 2021

“With the restrictions of having M.E. it feels like I have been in lockdown for over 30 years. Lockdown will continue for people with M.E./CFS and other chronic illnesses.” Mary, pictured,…

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Walk with M.E. 2021 starts today!

June 01, 2021

Walk with M.E. launches today! The sun is shining and we have 12 teams signed up and ready to start counting their collective steps, to raise funds and awareness for people with M.E.…

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Dr David Strain in latest Learn about M.E. podcast

May 28, 2021

Clinician and researcher Dr David Strain talks about working with people with M.E. and Long Covid in the latest episode of our Learn about M.E. podcast series, out today. Complementing…

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Join our new Act4ME network

May 27, 2021

People with M.E., carers and supporters are working together as part of our new Act4ME Network, launching today, to contribute to lasting change for adults, young people and families…

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Responding to questions about Abilify

May 21, 2021

This week there have been lots of questions and discussion on our Twitter feed about a medication called Aripiprazole, more commonly sold as Abilify.Anecdotally, some people with M.E.…

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Trans-Atlantic research fellowship announced

May 12, 2021

Action for M.E. and US charity Solve ME are excited to share that Profs Chris Ponting and Liz Worthey will work with postdoctoral fellows as part of our recently announced trans-Atlantic…

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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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Survey results so far: impact of Covid on M.E.

April 29, 2021

Covid-19 has a significant impact on symptoms for people with M.E., according to initial findings of the ongoing survey we're conducting with #MEAction UK and #MEAction Scotland.Gathering…

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Celebrating five years of Mentor M.E.

April 28, 2021

Bringing together people with M.E. for mutual peer-support in Scotland over five years, our brilliant Mentor M.E. project has come to an end. Mentors and mentees marked the end of…

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You can shape the future of M.E. research

April 19, 2021

Could your ideas shape the future of M.E. research? The M.E./CFS Priority Setting Partnership (PSP), led by a Steering Group of people with M.E./CFS, carers and health professionals,…

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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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Response to Newsnight item on treatment of long Covid

April 09, 2021

Last night’s edition of Newsnight on BBC2 tackled the issue of treatment for long Covid and drew parallels with treatment options for M.E./CFS. There are some striking similarities…

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APPG on M.E. to take place on 19 April

April 08, 2021

The Annual General Meeting of the All-Party Parliamentary Group on M.E. (APPGME) will take place on Monday 19 April between 11:00 – 12:00.This meeting is for MPs only and anyone can…

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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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​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…

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Today is Young Carers Action Day

March 16, 2021

This annual event, organised by Carers Trust, has taken place over the past six years to raise awareness of young carers and the contribution they make to their families and local communities.…

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CEO responds to letter in The Guardian

March 15, 2021

On 11 March a letter was published in The Guardian claiming that those with post-Covid fatigue syndrome should not be discouraged from trying graded exercise therapy. Along with other…

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Fundraisers of the week: Seven friends do Route 66

March 12, 2021

These amazing seven friends are raising funds for Action for M.E. by running or cycling the length of the iconic Route 66, a gruelling 2,280 miles. Jake, Chris, Dan, Ian, Matt, Paul…

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