News

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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Our CEO responds to Prof Paul Garner

January 28, 2021

Action for M.E. CEO, Sonya Chowdhury, responds to Prof Paul Garner.This morning, Prof Paul Garner appeared on BBC Breakfast to talk about his recovery from Long Covid. Building on…

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​International M.E./CFS family impact study

January 26, 2021

The opportunity to take part in an international research study looking at the impact of M.E./CFS on quality of life of patients and their family members is open until 31st March 2021.…

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National Strategy for Disabled People: have your say

January 25, 2021

The Disability Unit in the Cabinet Office is currently developing a National Strategy for Disabled People, scheduled for publication in spring 2021. To help inform the strategy, which…

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Guardian column on M.E. and Long Covid

January 22, 2021

“If one good thing emerges from this pandemic, it could be more recognition and funding for people with ME/CFS.” Columnist George Monbiot wrote a piece in the Guardian yesterday about…

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Watch 'Demystifying ME/CFS' webinar

January 19, 2021

Last week, on Thursday 14 January, Dr Charles Shepherd from the ME Association, Dr Nina Muirhead, and Caroline Kingdon from the UK ME/CFS Biobank each gave presentations at the ‘Demystifying…

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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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​Scotland consultation on Adult Disability Payment

January 14, 2021

The Scottish Government is consulting on the draft regulations for Adult Disability Payment (ADP), a new Scottish benefit that will replace Personal Independence Payment (PIP). Delivered…

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Joint charity statement on Covid-19 vaccine

January 13, 2021

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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'This is ME': a short film on Spoon Theory

January 11, 2021

“Back in 2019 when still in a bad flare up of M.E. I made a short film hoping to shed some light on our experiences with invisible illnesses and in particular the way in which our family/friends…

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Call for UK biomedical PhD Studentships

January 07, 2021

Action for M.E. is delighted to announce a call for applications for biomedical PhD studentships. Following the success of our Big Give Christmas Challenge, and the generosity of…

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Health Rising article shares info on Covid vaccines

January 05, 2021

M.E./CFS journalist Cort Johnson has written an article sharing information about Covid vaccines for people with M.E.This article lists nine vaccines that have been approved or are…

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Onwards and upwards, because of you

December 24, 2020

Ruth Richardson, Operations Director, reflects on 2020 and how your support means we can be here for even more people with M.E.Some people with M.E. who have contacted us for support…

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Our response to draft NICE guideline

December 23, 2020

Action for M.E. has responded to the consultation on the draft National Institute for Health and Care Excellence (NICE) guideline for M.E./CFS. While there are a number of positive…

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Penguin publish Maia’s letter from lockdown

December 21, 2020

A new book from Penguin, Letters from lockdown, brings together stories sent in by BBC Radio 4 listeners for its “Covid chronicles” series – including 14-year-old Maia-Simona, who has…

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Our Big Give final total is in

December 18, 2020

A big thank you to everyone who supported our Big Give Christmas Challenge campaign this year. Following a turbulent 2020, the campaign took on extra significance as a means to raise…

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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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Thank you for your Big Give support

December 08, 2020

Thank you to everyone who has contributed to our Big Give Christmas Challenge 2020. One week on from when it started, the challenge has now come to an end.In what has been an unprecedented…

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Dr Nina Muirhead: take part in our new M.E. study

December 03, 2020

We are excited to promote a new international research study looking at the impact of M.E./CFS on the quality of life for people with M.E. and their family members. Dr Nina Muirhead…

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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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Push for extension of local welfare assistance

October 29, 2020

Have you benefitted from support from local councils to help those struggling financially during the pandemic? The Trussell Trust have published a report making the case for extending…

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Reminder: NICE draft guideline to be published 10 Nov

October 27, 2020

Please note that the updated NICE draft guideline for M.E. is scheduled to be released two weeks today, on Tuesday 10 November.Following the release of the draft guideline, there will be…

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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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Casey Stoner discusses his M.E. diagnosis and 'Help Cure ME'

October 22, 2020

“As much as it’s great for me to get these warm responses, I hope that other people out there in the world can get some support.” Two time Moto GP world champion Casey Stoner has…

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​BACME position paper: comment and feedback

October 21, 2020

The British Association for CFS/M.E. (BACME), a network for UK clinical M.E. professionals, aims to “champion clinically effective practice in treating CFS/ME [sic] and other primary…

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Funding secured for M.E. education module in Scotland

October 20, 2020

A collaboration of M.E. charities, led by Action for M.E., has been granted funding from the Scottish Government to support M.E. education for doctors in Scotland. Last year, we…

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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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Scottish Goverment warns against GET and CBT for M.E.

October 16, 2020

The Scottish Government has written to M.E. organisations to highlight its recent updated advice cautioning against using graded exercise therapy (GET) and cognitive behaviour therapy…

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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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APPG on M.E. on welfare benefits: invite your MP

October 05, 2020

One of the many people with M.E. we have supported to apply for PIP will share their experience of the welfare benefits system at this week's All Party Parliamentary Group (APPG) meeting…

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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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Action for M.E.'s Avril presents at Self-Management Week

September 28, 2020

Join Action for M.E. as we speak at Alliance’s self-management event this Thursday (1 October) as part of Self-Management Week, running today until Sunday. This year’s ‘My Wellbeing,…

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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: Penny's sister Eleanor

September 18, 2020

“I want Penny to live life to the fullest and to not miss out on seeing friends, travelling or even something so simple as going to school."Eleanor Braham's younger sister Penny has…

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Facebook fundraiser of the week: 14-year-old Hugh

September 16, 2020

Hugh recently celebrated his 14th birthday. He was diagnosed with M.E./CFS when he was eight years old. He told us:"It was hard especially after just recovering from an excruciating…

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Going to university: information, support and advice

September 14, 2020

Starting or returning to university this year presents many challenges for students. Those with M.E. may find themselves able to access remote learning more easily, given the circumstances…

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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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M.E., long Covid and getting the right support

September 10, 2020

Forward ME has published an open letter addressing concerns and highlighting best practice with regards to rehabilitation of people with long Covid who are experiencing post-viral fatigue.…

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Back to school: information, support and advice

September 07, 2020

School is now back in session, though this often means something very different for young people with M.E. and their parents.We know that, while many will be pleased about schools going…

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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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Save the date: join us online for our 2020 AGM

September 01, 2020

All are welcome to join us online for our 2020 Annual General Meeting on Thursday 15 October.We are currently working on a programme for the 90-minute meeting, which will start at 1.30pm.…

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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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Vote for Sonya on the Bath Power List 2020

August 27, 2020

Our Chief Executive Sonya Chowdhury has been included in the Bath Power List 2020, with voting now open.Somerset Live, who publish the list, says: “Our annual Bath Power List identifies…

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M.E. petition to Scottish Government now closed

August 26, 2020

The Scottish Government’s Petitions Committee has ended its work on ME Action’s petition, supported by Action for M.E., calling for more investment research, training and education…

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Yahoo! News discusses M.E. and long-haul Covid similarities

August 24, 2020

“Doctors say feeling weak or foggy after normal tasks has become a distinct pattern among patients with long-lasting symptoms. It reminds them of another condition that's also still…

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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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Social distancing badges available for mobile or print

August 20, 2020

Earlier this month, the UK government published optional badges that people can use to assist with maintaining social distancing from others. The badges can be used to show the carrier…

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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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Sign our letter calling to halt the disability tax

August 13, 2020

Action for M.E. Chief Executive Sonya Chowdhury has written an open letter to the Chancellor, Rishi Sunak, opposing plans for a new tax for online shopping.A new tax like this will…

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Join Josh in taking on the Free Cycle challenge

August 12, 2020

Action for M.E.’s Josh is taking on the RideLondon Free Cycle challenge in support of his brother, who has M.E. We’re just a few days away from the 2020 My Prudential RideLondon,…

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Significant M.E. research proposal in the Netherlands

August 11, 2020

The Dutch national health research agency ZonMw is developing a proposal to spend £23m exclusively on biomedical M.E./CFS research over the next 10 years. The proposal began back…

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Severe M.E. Day 2020: Rose's Diary

August 08, 2020

“I have had severe M.E for 21 years and been housebound for that period. I do not know how I have survived, but I have. The challenge is beyond the disabling symptoms. The circumstances…

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Severe M.E. Day 2020: 'Dialogues for ME/CFS' video

August 08, 2020

“The pain levels were intense. The pain and paralysis were moving up his body, through his torso, into his neck and into his head. For him it was a very frightening experience and for…

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

August 06, 2020

Our Big Survey that we carried out last year gave us the chance to hear from over 4,000 people with M.E. This included hearing from children and adults with severe M.E.Feedback from…

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PhD student Josh publishes genetics and M.E. review

August 04, 2020

One of the two biomedical PhD students we are funding has published a paper looking at genetics and M.E. Action for M.E.-funded PhD student Joshua Dibble, M.E. patient Simon McGrath…

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Fundraiser of the week: Alex's virtual Great North Run

July 31, 2020

Our fundraiser of the week is Alex, who’s not letting cancelled events get in the way of his fundraising efforts. Having had his plans to take on the Great North Run scuppered by last…

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Support Action for M.E. in online charity poll

July 31, 2020

How would you like to save money on your online purchases while helping to raise money for Action for M.E.? We’re taking part in the My Favourite Voucher Codes charity poll for August.…

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M.E. book wins big at The People's Book Prize

July 28, 2020

Enormous congratulations to Jessica Taylor-Bearman for her recent success in winning the People’s Book Prize for non-fiction for her book ‘A Girl Behind Dark Glasses.’ ‘A Girl Behind…

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Prudential RideLondon launch August fundraiser

July 27, 2020

What has wheels but no engine, and a big smile? A My Prudential RideLondon fundraiser for Action for M.E.! Following the cancellation of annual London cycling festival, Prudential…

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Fundraiser of the week: live streaming Tim

July 24, 2020

Today’s fundraiser of the week is Tim, who marked his 33rd birthday with a gaming fundraiser for Action for M.E. Tim organised a live stream on Twitch of ‘Sonic Boom: Rise of Lyric’…

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Minutes of Forward ME, Friday 10 July

July 21, 2020

The minutes of the latest meeting of Forward ME is now available. At the meeting the charities discussed the DecodeME and Priority Setting Partnership (PSP) research projects, along…

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Fundraiser of the week: Zara and her Jurassic hike

July 17, 2020

A huge thank you to this week’s fundraiser of the week Zara, who’s taking on the mammoth Jurassic Coast Challenge 2020, trekking from Poole Harbour to Weymouth to raise money for Action…

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See Scope's open letter to the PM

July 16, 2020

UK disabilities charity Scope have written an open letter to the Prime Minister, calling on him not to forget disability equality in the Government's recovery plan, through the pandemic…

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Fundraiser of the week: all the Walk with M.E. teams!

July 10, 2020

With contributions now finalised after amazingly continuing to come in past the May 12 end date, our fundraisers of the week this week are all the teams who contributed to this year’s…

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New research paper: home healthcare for severe M.E.

July 06, 2020

A research paper from the team at the UK M.E./CFS Biobank, who have visited nearly 100 people bed- or house-bound with M.E., offers their reflections on healthcare for those severely…

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Fundraiser of the week: runner Melanie

July 03, 2020

Not one run, not two, but 40 - that's the number of runs our fundraiser of the week, Melanie Alflatt, is aiming to complete for the #GNRSoloChallengeMelanie is fundraising for her husband,…

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CEO Sonya Chowdhury on the potential rise of M.E./CFS

July 02, 2020

Our CEO Sonya Chowdhury spoke on BBC Points West today about the potential rise in M.E./CFS following Coronavirus, and the number of people who are experiencing problematic or delayed…

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Action for M.E. update: extending our support service

June 30, 2020

In April, we launched our new Crisis, Advocacy and Support Service for people with M.E. of all ages, supporting you to make informed decisions, secure essential practical local assistance,…

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Fundraiser of the week: cream teas by Clare

June 26, 2020

What a week it's been, with the amazing launch of DecodeME, the M.E./CFS DNA study that aims to help us understand the disease and ultimately find treatments.As we co-lead this research,…

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"We can make DecodeME a success by working together."

June 25, 2020

Sonya Chowdhury, our Chief Executive, reflects on the years of dedication and collaboration by so many, that have led to this week's launch of

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DecodeME gets £3.2m funding for ME/CFS DNA study

June 22, 2020

Patients, scientists and advocates are celebrating £3.2m funding for DecodeME, the largest ever ME/CFS DNA study, announced today.As part of the ME/CFS Biomedical Partnership, Action…

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Fundraiser of the week: 10-year-old Sonny

June 19, 2020

Sonny is 10 years old, and is cycling 100 miles this month to raise money for Action for M.E."I have chosen to raise money for Action for M.E. because my Mummy has had M.E. for 26 years,…

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EU parliament calls for more M.E. research

June 18, 2020

The European Parliament has passed a motion with an overwhelming majority calling for more funds to research M.E.In a resolution adopted yesterday, with 676 votes in favour, four against…

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