News

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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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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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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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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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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Free online self-advocacy workshop, Wed 15 July

June 18, 2020

Do you live in Bath and North East Somerset? Do you have M.E./CFS, or care for someone who does? Would you like to improve your self-advocacy skills to ensure your voice is heard and…

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Action for M.E. CEO featured as a Lockdown Legend

June 12, 2020

Action for M.E. CEO Sonya Chowdhury has been featured by JustGiving as one of their Lockdown Legends due to her fundraising efforts with Curry for M.E.Within 24 hours of offering curry…

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Carer’s plea to Make Caring Visible

June 11, 2020

Action for M.E. is paying tribute to the men, women and children who play a vital role in caring for a loved one.People like Clare Jewkes who juggles her full-time job in the NHS with…

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Help shape the future research priorities for M.E./CFS

June 11, 2020

There is a fantastic opportunity for people to join a steering group to support an exciting project which will put people with M.E. at the forefront of future research into the debilitating…

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Supporting our carers during Carers’ Week 2020

June 08, 2020

Action for M.E. is celebrating Carers’ Week 2020 (June 8-14) and paying tribute to the men, women and children who look after a loved one who is living with M.E.If you give assistance…

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APPG on ME - Next meeting on Tuesday 16th June 2020

June 08, 2020

The APPG on ME will be resuming work on their report at a virtual meeting on Tuesday 16th JuneThis meeting will cover issues relating to children and adolescents with ME/CFS - including…

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Fundraiser of the Week: 8 year olds Ruth and Alice

June 05, 2020

We want to say an enormous thank you to Ruth and Alice, both aged 8, who are this week’s fundraisers of the week and raised an incredible £1,161 between them. The walk saw them take…

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Join us for a Cream Tea for M.E.

June 04, 2020

Whether you’re jam first, or cream first, we would love you to get involved in Cream Tea for M.E.With Friday 26 June being National Cream Tea Day, we are asking our supporters to create…

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UPDATE on the campaign to #IncreaseDisabilityBenefits

June 03, 2020

Action for M.E. is calling for action to stop thousands of disabled people from missing out on an emergency out of work benefit top-up to help them through the Covid-19 crisis because…

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Even though May is over, forget M.E. not

June 02, 2020

Anyone who has M.E. will know the illness isn’t just there for an awareness month, week or day, and we support people with M.E. to get their stories out there throughout the year.We…

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Huge thank you to our amazing volunteers and Trustees

June 01, 2020

From writing articles for InterAction to raising money through fundraising events, our fabulous volunteers are crucial in helping us to support thousands of people living with M.E.This…

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M.E. Awareness Month: sharing stories with millions

May 29, 2020

To everyone who took the time and energy to share their story with us this M.E. Awareness Month, allowing us to bring it to a wider audience on our social media channels, in newspapers,…

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Making caring visible: sharing carer stories

May 28, 2020

We know from our Big Survey last year that most carers of people with M.E. are family members or close friends. A recent survey by Carers UK found that 70% of unpaid carers are providing…

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Local M.E. support groups: holding meetings online

May 26, 2020

Has your local M.E. support group been trying to move meetings online?Simon, who appears in our latest short film about living with M.E. and lockdown, has shared some information and…

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New training module for healthcare professionals

May 22, 2020

A new training course has been produced for health professionals by Dr Nina Muirhead and the Medical Education Working Group. The working group was formed from members of the UK CFS…

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Fundraiser of the week: Nat and her amazing new do

May 22, 2020

This week, we say a huge thank you to Nat who took on her own 2.6 Challenge to raise money for Action for M.E.Despite having no hairdressing experience and going at this challenge alone,…

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Avril: learning self management from people with M.E.

May 21, 2020

Avril, our Project Officer in Scotland, shares her thoughts on self-management in a new blog for Health and Social Care Alliance Scotland. She says:"Normally I work on the Mentor M.E.…

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Action for M.E. on the Spoonie Village podcast

May 19, 2020

Action for M.E. is delighted to feature in one of the latest podcasts from Spoonie Village.Clare Ogden, our Head of Communications and Engagement, shot the breeze with Hayley and Tom…

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CEO comment on early intervention study for CFS

May 18, 2020

A paper has been published, reporting on an unsuccessful feasibility study of early intervention to prevent CFS in adults.It concludes: "A randomised controlled trial to test an early…

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Experts by experience: Daisy, Naomi and Simon

May 18, 2020

Living with M.E. can often force people to become experts at self-care, careful planning, energy-management, learning to say no, living with uncertainty, coping with isolation… the…

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Sue's M.E. story: "It was like losing my identity"

May 13, 2020

Sue Hardy was working as a nurse when she began struggling with her health. After gallbladder surgery that she believes "was the final nail in the coffin." Sue was diagnosed with M.E."There…

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Celebrating steps this M.E. Awareness Day

May 12, 2020

Today, M.E. Awareness Day, marks the end of this year’s Walk with M.E. challenge. We want to say an enormous thank you to all our Walk with M.E. fundraisers for raising awareness, walking…

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11 to 17 May is M.E. Awareness Week

May 11, 2020

This week is M.E. Awareness Week.We are sharing stories of people with M.E. each day, like this one from a supporter in the North West:“This is a serious and long-term illness that…

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Countess of Mar retires: share your message of thanks

May 04, 2020

Action for M.E. would like to extend our sincere and grateful thanks to the Countess of Mar, who has announced her retirement from the House of Lords following almost 45 years of service.Margaret,…

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Fundraisers of the week: our eggsellent 2.6 Challenges

May 01, 2020

This week, we have three amazing fundraisers of the week: our 2.6 Challengers.Like so many charities, we rely on our brilliant supporters taking part in fundraising events to support…

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Highlighting M.E. in two parliamentary inquiries

April 30, 2020

Action for M.E. has responded to two important House of Commons inquiries focusing on the impact Covid-19 and the lockdown has had on people with M.E.Over the past few months we have…

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This M.E. Awareness Month, your story matters

April 30, 2020

M.E. Awareness Month is almost upon us, with M.E. Awareness Day on Tuesday 12 May - and it's going to be an M.E. Awareness Month quite unlike any other.While the world has changed in…

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Curry with M.E. total so far: an amazing £10,585

April 28, 2020

We would like to say a huge thank you to everyone who has supported our CEO Sonya Chowdhury's 2.6 Challenge.Her take on this UK-wide campaign is Curry for M.E., walking 2.6 miles to…

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Sonya's 2.6 Challenge: Curry for M.E.

April 23, 2020

Like so many other charities, Action for M.E. relies on our brilliant fundraisers taking part in fundraising events to support our vital work.The cancellation of these events due to…

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Tell UK Gov your experience of COVID-19 support

April 16, 2020

Can you share your experience to help the UK Government understand the impact of the lockdown and Coronavirus situation on people with M.E. and other long-term conditions?We are asking…

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Join the Priority Setting Partnership Steering Group

April 15, 2020

An exciting opportunity has opened up for people to join the steering group for the new Priority Setting Partnership (PSP) which is being run by Action for M.E. and the James Lind Alliance.This…

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UPDATE Priority shopping: "extremely vulnerable" list

April 09, 2020

Following the steps taken by Action for M.E. and other UK charities over the last few weeks, representatives from various supermarkets have responded detailing the steps they are taking…

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Priority shopping campaign UPDATE

April 03, 2020

On Friday 27 March, we wrote a letter to the UK Government and major supermarket chains, signed by members of Forward-ME and the All Party Parliamentary Group for M.E. We highlighted…

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Fundraiser of the week: birthday girl Jo

March 27, 2020

Jo Bradley who was diagnosed with M.E. in 2014 while working as a Retail Manager. She told us:“I wanted to raise money for Action for M.E. because of the support you’ve provided me…

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Action on urgent need for priority shopping

March 27, 2020

Action for M.E. has joined with other others to highlight the immediate challenge faced by people with M.E. in accessing food and essential supplies, and ask for immediate action.Signed…

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Coronavirus Bill and Care Act concerns: tell your MP

March 23, 2020

Yesterday, Disability Rights UK shared its serious concerns about the implications of the Coronavirus Bill on human rights, particularly for disabled people and those with long-term…

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APPG on M.E. update: biomedical research meeting

March 17, 2020

The All-Party Parliamentary Group (APPG) on M.E. held its first meeting on Tuesday 3 March, where biomedical research was discussed.Twenty MPs attended or sent staff to hear about the…

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Exciting new project to set M.E. research priorities

March 10, 2020

A new project, supported by three Government-backed research funders, has been launched to help ensure that the M.E. research priorities that matter most to the people affected by the…

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Fundraiser of the week: Hazel Wilcox and team

February 28, 2020

This week’s fundraisers of the week are Hazel Wilcox and her team. Hazel, whose sister has M.E., is taking part in Walk with M.E. with her team in order to support Action for M.E. and…

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Fundraiser of the week: Belinda and her handmade cards

February 21, 2020

Our fundraiser of the week is Belinda, who is donating money from sales of her handmade greeting cards.Belinda was diagnosed with M.E. and Fibromyalgia four years ago. She says:"In…

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Will your MP attend the APPG for M.E. in March?

February 20, 2020

The next meeting of the All Party Parliamentary Group for M.E. is taking place on Tuesday 3 March where the focus will be on biomedical research. You can still invite your MP to…

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Free research workshop in Bristol: all welcome

February 20, 2020

What big research questions do people with M.E., their carers and clinicians want answered?You are invited to a free workshop on Tuesday 10 March to start a conversation about addressing…

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Updated resource: pacing for people with M.E.

February 18, 2020

Fully revised for 2020, our comprehensive pacing guide is based on the insight and experience of people with M.E.Pacing is a an approach that can help people with M.E. take control…

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Scottish Health Council survey of M.E. in Scotland

February 14, 2020

The Scottish Health Council (SHC) has launched a survey to gather the views and lived experience of people with M.E./CFS in Scotland. The survey was commissioned in response to questions…

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Fundraiser of the week: beer can man Nick West

February 14, 2020

We’re saying a hearty cheers and thank “brew” very much to today’s fundraiser of the week, beer can fan Nick West.Last year, Nick made it into the news when he donated part of his…

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Meet M.E. drop-in in Fife on 12 March: all welcome

February 12, 2020

We asked Zara, who attended one of our Meet M.E. drop-in events, what she loved about the session. She said:"Meeting other people with M.E... Knowing that people are interested in supporting…

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International #WomenInScience Day: CMRC speakers

February 11, 2020

“It’s shocking that so many people are living with this debilitating illness and there is so little attention on it," says Dr Sadie Whittaker. "I feel strongly that increasing recognition…

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Fundraiser of the week: Sarah and her team mates

February 07, 2020

"Together as a team we hope to raise awareness and funds for Action for M.E. so that they can make a difference to the lives of those with this invisible and greatly misunderstood…

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Neurological care and support in Scotland update

February 03, 2020

Last month the Scottish Government launched the Neurological care and support: Framework for action 2020-2025. This framework sets out their vision for driving improvement in the care…

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Team Action for M.E. seeks Bath Half runners

January 29, 2020

Last year, Daniel and our Bath Half team raised more than £2,522 to help us reach even more people with M.E. Daniel told us:“I was watching telly and came across a person with M.E.…

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Michael: "Mentor M.E. meant I was less isolated."

January 28, 2020

Michael has M.E. and lives in Stirling, Scotland.“Before, I found it difficult to accept my illness. Other people didn’t believe I was ill, as I looked OK to them. This made me not…

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Fundraiser of the week: Sarah Middleton and friends

January 24, 2020

Our fundraiser of the week is Sarah and her intrepid friends Catherine, Fran and Liz, undertaking the Yorkshire Three Peaks Challenge in April. "I’ve grown up with the Yorkshire Dales…

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Update on M.E. in WHO's latest disease classification

January 20, 2020

After years of hard work by M.E. advocate Suzy Chapman, the World Health Organisation (WHO) has doubled back on plans which would have made it even harder for people with M.E./CFS to…

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Fundraiser of the week: Genevieve Miles

January 17, 2020

“When I was 14 I became ill and never really got better," recalls our fundraiser of the week, Genevieve Miles. "Turns out I have M.E. It was boring, frustrating and so sad, I definitely…

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Holly: "Walk with M.E. seemed like the perfect fit"

January 14, 2020

Holly has been unable to leave her house since 2012. She told us:“M.E. has dramatically altered my life and the lives of those around me, especially my parents, who had to also become…

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Say yes to biomedical research: show your support

January 03, 2020

More than 1,500 people with M.E., carers, family members and friends have already shown their support for a potentially game-changing genetic study - but we need thousands more.You…

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Information and support over Christmas and New Year

December 19, 2019

Action for M.E.'s Information and Support Service is now closed for the Christmas break, earlier than expected due to staff sickness. It will reopen on Monday 6 January 2020. We will…

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M.E./CFS Biomedical Partnership: share your ideas

December 19, 2019

In November, the newly established M.E./CFS Biomedical Partnership met with Medical Research Council and the National Institute for Health Research to discuss an application for funding…

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General election: next steps

December 13, 2019

After the results of the general election, you may have some questions about how the result will affect you and your family. As part of our work, we will be looking at the promises…

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Because of you, our Big Give total tops £140,300

December 11, 2019

We are thrilled to report that, with your support, our Big Give Christmas Challenge raised an incredible £140,313. From all of us here at Action for M.E., and on behalf of those…

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The Big Give Christmas Challenge 2019 is here!

December 03, 2019

The Big Give Christmas Challenge 2019 is here! Every donation we receive through the Big Give website between now and 10 December will be doubled whilst our match pot lasts.*Update…

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The Big Give Christmas Challenge 2019 - FAQ

December 02, 2019

The Big Give Christmas Challenge 2019 starts at noon on the 3 December, and will run until noon on Tuesday the 10 December. Throughout this week any donation made to us through the…

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Parliamentary engagement: taking a stand for M.E.

November 29, 2019

This election we have written to 1,500 General Election candidates asking them to stand up for M.E. if they are elected.In our letters, we have shared information about the condition…

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ME/CFS Biomedical Partnership PPI Steering Group Update

November 28, 2019

SummaryOn Monday, the ME/CFS Biomedical Partnership met with Medical Research Council (MRC) and the National Institute for Health Research (NIHR) to discuss an application for funding…

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Only one week to go until the Big Give!

November 26, 2019

With only one week to go until the Big Give Christmas Challenge 2019 we wanted to share the Big Give official video, featuring Alexander Armstrong: The Big Give Christmas…

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No Isolation - AV1 Robot steering group

November 25, 2019

On Friday we attended a steering group for No Isolation government funded AV1 robot project. No isolation are reducing loneliness and isolation through ‘warm’ technology. Their AV1…

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M.E. and school: how can I help? Awareness raising session.

November 22, 2019

Yesterday over 60 education professionals who specialise in a variety of areas such as safeguarding, child protection, teaching and managing students with complex conditions attended…

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Fundraiser of the week - Elinor's 21st Birthday

November 22, 2019

We’d like to say happy birthday to our fundraiser of the week Elinor who is turning 21 today! She has generously asked her friends and family to donate to her Facebook birthday fundraiser…

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​GP home visits under threat

November 20, 2019

Action for M.E. has raised serious concerns with every Local Medical Committee (LMC) following the announcement of a motion at their conference by Kent LMC to stop home visits by GPs.…

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Fundraisers of the week: Andrew and Rob

November 15, 2019

We’d like to say a huge thank you to our fundraisers of the week, father and son duo, Andrew and Rob who have just completed the Men’s 10K Edinburgh 2019.When explaining their reasons…

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Fundraiser of the week - David's half marathon

November 08, 2019

Our fundraiser of the week is David who has recently taken part in the Hever Castle Half Marathon. When speaking about his reasons for supporting our charity, David tells us : “I'm…

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ME/CFS Biomedical Partnership to apply for funding

November 07, 2019

Led by biomedical researchers and patient representatives, including Action for M.E. Chief Executive Sonya Chowdhury, a newly established group called the ME/CFS Biomedical Partnership…

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​Edinburgh ME Self Help Group's AGM and open meeting

November 07, 2019

Open meeting - ‘ Sharing experiences of living (a better life) with M.E.’ On 26 October, we were invited to attend the Edinburgh ME Self Help Group’s (EDMESH) Annual General Meeting…

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December general election - key dates

November 07, 2019

Yesterday signified the first day of political purdah, meaning the time between when a UK election is announced and when that election is held. Over the next few weeks there will be…

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Meet M.E. - our second drop-in event in Inverness

November 06, 2019

On 26 October, we . co-hosted our second drop-in event for people with M.E. in Inverness. This was in partnership with M.E. Highlands and Islands Network and The Oxygen Works. Based…

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House of Commons Petitions Committee report on fireworks

November 05, 2019

Events such as bonfire night aren’t events that are celebrated by everyone. For people with conditions such as M.E./CFS it can be a very distressing and difficult time. Earlier this…

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Fundraiser of the week - Amber

November 01, 2019

We'd like to say a huge thank you to our fundraiser of the week Amber. Today she has cut off 16 inches of her hair (which will be donated to The Little Princess Trust) in order to raise…

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​InterAction needs you: Christmas customs

October 30, 2019

“If it falls on a day the salon is open, I have my hair done on Christmas Eve. I am always the last customer of the day, just before they have a little staff party. The atmosphere is…

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Temporary office closure on 31 October

October 30, 2019

Our office and phone lines will not be open tomorrow due to staff training. Normal office hours will resume on Friday 1 November.If you need information and support whilst we are away,…

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