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​M.E. highlighted at the 71st World Health Assembly

May 23, 2018

The need for accelerated biomedical research, and training and education for health professionals, has been highlighted at the first-ever World Health Assembly side event focused on…
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​Have you received SEND support in school?

May 21, 2018

If you are a young person or young adult, we want to hear more about your experiences being assessed for, or receiving, SEND support in school for your M.E. You can also fill out our…
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Fundraiser of the week - Leanne Toward

May 18, 2018

Our fundraiser of the week is Leanne Toward, who is taking on the Great North Run for us this September.Leanne said: "My lifelong friend has suffered from severe M.E. for over 10 years.…
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Walk with M.E. raises over £3,300

May 16, 2018

Our new fundraising event Walk with M.E. has exceeded all our expectation to raise over £3,300!Walk with M.E. is a team sponsored walk, with each team member contributing as many steps…
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Fundraiser of the week - Walk with M.E.

May 11, 2018

For this week's fundraiser of the week we'd like to say a big thank you to our Walk with M.E. teams!Libby Seath, Belinda Yorke, Bethany Ollier, Tiggy Snowdon, Kate Lodal, Anna Pratt,…
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Ask your MP to show support for M.E. Awareness Week

May 10, 2018

An Early Day Motion has been tabled in the UK parliament in recognition of M.E. Awareness Week, with a similar motion tabled in the Scottish Parliament too - see below.Early Day Motions…
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​Patients and professionals show MSPs: This is M.E.

May 09, 2018

The chronic, neurological condition myalgic encephalomyelitis (M.E.) affects more people in Scotland than MS and Parkinson’s combined – but doctors receive almost no training on the…
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National Mass Observation Day needs your diaries

May 08, 2018

Action for M.E. is working with a national project that collects the diaries of UK citizens to capture the experiences, thoughts and opinions of everyday people in the 21st century…
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Fundraiser of the week - Sophie Funnell

May 04, 2018

Our fundraiser of the week is Sophie Funnell, who is taking part in a year of challenges for us, which includes running an online pet show.Categories include Most Handsome Boy, Most…
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Registration now open for 2018 CMRC conference

May 03, 2018

Registration is now open for the 2018 UK CFS/M.E. Research Collaborative conference, which takes place in Bristol on Wednesday 19 and Thursday 20 September.Registration fees for people…
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Action for M.E. meeting with Minister for Children

May 02, 2018

As part of the Health Conditions in Schools Alliance, charities including Action for M.E. are meeting today with Nadhim Zahawi, Minister for Children and Families, to highlight the…
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Helping you explain your health care needs

May 01, 2018

Today is the start of M.E. Awareness Month and to mark the occasion, Action for M.E. is launching a new resource pack to help people with M.E. think about and explain their health needs…
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Fundraiser of the week - Julia Ferguson

April 27, 2018

Our fundraiser of the week is Julia Ferguson, who has given up chocolate until M.E. Awareness Day."I've given up my Bournville, Toblerone, giant Cadbury's Buttons and all things chocolatey…
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International advocacy work "very encouraging"

April 26, 2018

The progress of Action for M.E.’s international advocacy work has been “very encouraging” over the past few months, reports our Head of International Advocacy, following meetings with…
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​Invite your MSP to Scottish Parliament event

April 24, 2018

Gail Ross MSP is hosting an event in the Scottish Parliament during M.E. Awareness Week, celebrating the patients and professionals working to improve the lives of those living with…
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What was the impact of your benefit sanction?

April 23, 2018

The Work and Pensions Committee has opened an inquiry into the use of benefit sanctions, and Action for M.E. wants to hear from you so we can tell them how the use of sanctions impact…
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Info and Support Line update: revised hours

April 19, 2018

Given current demands on staff capacity in the office, we are slightly reducing the hours that our Information and Support Line is open each day.This means that, from today, our Information…
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"I was desperate to talk to someone who understood"

April 17, 2018

"When my son Lewis, now 11, caught a bug he seemed unable to shake off in 2016, his symptoms seemed worryingly familiar. Although I tried to convince myself he would soon be back to…
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Fundraiser of the week - Myurah Nathan

April 13, 2018

Our fundraiser of the week is Myurah Nathan, who is running the 2018 London Marathon for us on 22 April.Talking about her reasons for taking part in the 26.2 mile run, Myurah said:…
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Millions Missing Protest coming to Geneva

April 10, 2018

Action for M.E. is supporting the Millions Missing campaign with our Millions Missing event in Geneva on Saturday 12 May – and you can get involved at home, online or in person.Millions…
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Welfare line temporarily closed

April 09, 2018

Welfare benefits advice and information: important newsFrom Monday 9 April, Action for M.E.’s Welfare Rights Line will be temporarily closed while we recruit a new advisor. Our current…
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Fundraiser of the Week - Katie Howell

April 06, 2018

Our fundraiser of the week is Katie Howell, who is one of the organisers of the Spring Performance Car Action Day at Castle Combe on Saturday 7 April.The event, which will be helping…
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Call for Science Media Centre to retract factsheet

April 05, 2018

The Countess of Mar has written to the Science Media Centre, asking them to retract and replace their recently published factsheet on M.E.Her letter, sent on behalf of Forward M.E.,…
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Research round-up: autoimmune disease and M.E./CFS

March 29, 2018

Supporting you to stay informed about M.E. research, we publish regular round-ups from Action for M.E. volunteer and pharmacist Emily Beardall, covering a selection of papers published…
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Your experience of health and social care for M.E.

March 28, 2018

Working with charity Disability Rights UK, the Care Quality Commission (CQC) wants to hear feedback from disabled people, including those with long-term conditions such as M.E., about…
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Our latest Cheers update, by and for Young Members

March 27, 2018

Action for M.E.'s Children and Young People's Service Team are delighted to re-launch Cheers, a regular update by and for our Young Members.This online update is currently being shared…
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Fundraiser of the Week - Ella Walters

March 23, 2018

Our fundraiser of the week is Ella Walters, who is taking part in Walk With M.E. on behalf of her friend Kate, who has M.E.Ella and the other members of Team Kate - Sophie Hassell,…
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Dangers of GET highlighted in letter to The Times

March 23, 2018

Action for M.E. has signed a letter written by the Countess of Mar and Forward M.E. that has been published in The Times newspaper today.The letter, which you can read in full below,…
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​PACE update: latest analysis and comment

March 22, 2018

A study published today in the journal BMC Psychology, which examines data from the PACE trial and evaluates the conclusions from the trial as a whole, raises "serious concerns about…
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What impact has claiming benefits had on your life?

March 21, 2018

Research is now being carried out by the Disability Benefits Consortium (DBC) into the impact of welfare reform on disabled people’s lives – and they want to make sure people with M.E.…
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Raising awareness of M.E. at JobCentre Plus

March 20, 2018

People with M.E. who feel able to stay in - or return to - some form of employment need support tailored to their individual needs.One of the ways Action for M.E. has been supporting…
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Fundraiser of the week - Chloe Salanson

March 16, 2018

Our fundraiser of the week is Chloe Salanson, who is raising money for us on her birthday.Chloe, who has M.E. herself, said: “I was diagnosed about a year and a half ago after years…
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Action for M.E. on BBC Radio Bristol today

March 16, 2018

Our CEO Sonya Chowdhury will be on BBC Radio Bristol this morning at around 11am to speak with presenter John Darvall about young people with M.E.Sonya will speak to John about the…
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Our CEO named in Top 100 West Women of the Year 2018

March 12, 2018

Sonya Chowdhury, Chief Executive, Action for M.E., has been named in the 2018 West Women of the Year Top 100 list.The Bristol Post, who publish the list, says: “We asked you for your…
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Fundraiser of the week - Jemma Storey

March 09, 2018

Our fundraiser of the week is Jemma Storey, who is running the London Marathon for us.Jemma is raising money for us and awareness of M.E. because someone close to her is severely affected…
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Scotland survey needs your input

March 08, 2018

The Alliance Scotland are seeking your views on living with M.E., and what health and social care you’ve received for the condition. The Alliance is a membership organisation representing…
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​CMRC update: new purpose, objectives and values

March 06, 2018

A new, ambitious, scientific strategy has been developed by the UK CFS/ME Research Collaborative (CMRC), of which Action for M.E. is an active Executive Board member.The Executive Board…
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​Keeping in touch with Action for M.E.

March 05, 2018

The law is changing for charities, which means that we will no longer be able to contact our supporters unless we have consent to do so – we need your permission to keep in touch.We…
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The Big Give keeps on giving: thank you!

March 01, 2018

At the end of last year, donations from our brilliant supporters raised more than £121,110 for our Big Give Christmas Challenge.Now, a few months on, we are delighted to win one of…
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Discussing M.E. on BBC Five Live today

February 28, 2018

"Why do we know so little about M.E.?" asks Gary Burgess, guest editor on today's Afternoon Edition on BBC Five Live.Very recently diagnosed, and aiming to explore issues around diagnosis…
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Better support needed for M.E. in schools

February 27, 2018

Action for M.E. have responded to two consultations highlighting the need for better support to be in place in schools for children and young people with M.E.The Department for Education…
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Fundraiser of the week: Franco de la Croix-Vaubois

February 23, 2018

There's just over a week to go until the Bath Half Marathon, and our Fundraiser of the Week is feeling fighting fit."I have been doing my training two or three times a week to build…
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New PhD funding for biomedical M.E. research

February 22, 2018

Action for M.E. and the Scottish Government Chief Scientist Office are pleased to launch a joint funding call for Scottish Universities to host a PhD studentship in biomedical research…
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PACE trial Westminster debate - our summary

February 20, 2018

A parliamentary debate on the PACE trial has highlighted the flaws of the trial and called for greater education among the public and medical practitioners.Carol Monaghan MP (Glasgow…
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NICE announces next steps in guideline update

February 19, 2018

The National Institute for Health and Care Excellence has announced its next steps in updating its guideline on M.E./CFSAfter a workshop was held last month for stakeholders, including…
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Fundraiser of the week - Nick Biddle

February 16, 2018

Our fundraiser of the week is Nick Biddle, who is running the London Marathon for us this year because his son has M.E.Talking about his son Bud’s experiences, Nick said: “He spent…
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PIP and ESA report: "Process needs urgent change"

February 14, 2018

“No one should have any doubt the process needs urgent change.”Frank Field MP, Chair of the Work and Pensions Select Committee, has spoken out today about the consistent failings of…
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Fundraiser of the Week - Rotary Club of Baldock

February 09, 2018

Our fundraiser of the week is the Rotary Club of Baldock, who donated to us after our trustee Sue gave a talk there sharing her own experiences of M.E.The Rotary Club of Baldock is…
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PACE trial to be debated at Westminster

February 08, 2018

A Westminster Hall debate about the PACE trial, and its impact on people with M.E., will be held on Tuesday 20 February.Leading the debate, Carol Monaghan, SNP MP for Glasgow North…
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Views on PIP needed in Northern Ireland

February 05, 2018

The Department for Communities in Northern Ireland is looking to hear from people who have claimed Personal Independence Payment (PIP), as they launch an Independent Review of the benefit.People…
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Fundraiser of the week - Libby

February 02, 2018

Our fundraiser of the week is Libby, who raised over £600 for us in one week.Libby is taking part in Walk With M.E., only walking as many steps as she can safely manage, which will…
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Welfare line closed today

February 02, 2018

Our Welfare Advice and Support Service is closed today (2 February) due to our welfare rights advisor being off sick.The line will be open as usual again on Tuesday.We apologise for…
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​Bethany’s Walk with M.E. challenge

January 30, 2018

“I went from leading a very active and fun life to being constantly stuck at home isolated and confused. The life I'm living now is not what I thought my early 20s would be like. I…
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Share your experience of chronic pain

January 29, 2018

What would you would like health professionals to understand about living with pain and the ways they can help you?Pharmacist and Action for M.E. volunteer Emily Beardall will give…
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Fundraiser of the week - Gill

January 26, 2018

Our fundraiser of the week is Gill, who sold jewellery with her son Paul at a Christmas Fair in December.The pair raised £77 from the event and Gill has previously sold jewellery to…
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​Latest research: criteria, course of illness and more

January 25, 2018

Supporting you to stay informed about M.E. research, we publish regular round-ups from Action for M.E. volunteer and pharmacist Emily Beardall, covering a selection of papers published…
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Office closed for staff training Tuesday and Wednesday

January 22, 2018

The Action for M.E. office will be closed this Tuesday 23 January and Wednesday 24 January for staff training. Our Information and Support Service will be unavailable during this time.Our Welfare…
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Welfare line gets new opening hours 29 January

January 22, 2018

Our Welfare Advice and Support Service will be getting new and extended opening hours from the end of January.The service, which offers free confidential advice on welfare benefits…
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Fundraiser of the week - Liese

January 19, 2018

Our fundraiser of the week is Liese, who is holding a special Twitch gaming stream for us throughout the year.Lisa said: “Two years ago I was active, bright and happy. I walked across…
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Unrest to be screened at Scottish Parliament

January 18, 2018

Ben Macpherson MSP is hosting a special screening of the award-winning M.E. documentary, Unrest, at the Scottish Parliament this month, on behalf of Shella Films and one of the film's…
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Walk with M.E. - Natalie's story

January 17, 2018

“I can’t count the number of times I cried wanting to be out with my friends and having other outside company besides the TV. All I wanted was to have a future that was positive and…
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NICE guideline: Action for M.E. at scoping meeting

January 16, 2018

Action for M.E. are attending a National Institute of Health and Care Excellence (NICE) meeting today to inform the scope of the updated NICE guideline on M.E.The NICE guideline offers…
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International M.E. advocacy: our latest project

January 15, 2018

Action for M.E. is delighted to announce the launch of our international advocacy project. Our aim is that, as a result, the World Health Organisation (WHO) and its member states –…
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Fundraiser of the week - Bethany and team

January 12, 2018

Our fundraiser of the week is Bethany Ollier and her team, who are taking part in this year's Walk With M.E. event.Walk with M.E. is a sponsored team walk, specially designed for people…
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​Paediatric M.E. research study: alternative funding

January 11, 2018

A paediatric M.E. research study that Action for M.E. was supporting has found alternative funding, allowing us to use the money to support children and families with M.E. in other…
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InterAction needs you: share your ideas and tips

January 10, 2018

Our readers' ideas, feedback, stories and experiences are the lifeblood of our Membership magazine, InterAction – and we have two opportunities for people affected by M.E. to contribute…
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Join us for Walk with M.E. 2018

January 09, 2018

Walking one million steps over 100 days is a sizeable challenge, even if you don't have M.E.That's why Action for M.E. supporter Natalie asked her friends and family to help - and the Walk…
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#CMRC2017 conference report now online

January 08, 2018

Thanks to a dedicated team of volunteers, a full report of the fourth annual UK CFS/M.E. Research Collaborative (CMRC) science annual conference, held in Bristol in September 2017,…
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New webinar for health professionals coming this month

January 04, 2018

The latest webinar in Action for M.E.’s series for health professionals will go live on Tuesday 16 January from 8pm to 9pm.Titled M.E./CFS: Management principles for health professionals,…
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Fundraiser of the Week: James Reay and Simon Dooley

December 22, 2017

Our fundraisers of the week are James Reay and his partner Simon Dooley, owners of the Clarendon Showtel in Blackpool who are looking to raise an ambitious target of £250,000 in support…
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​Unrest now available to buy on DVD

December 19, 2017

Award-winning M.E. documentary Unrest is now available to buy on DVD.As a charity partner for the film, Action for M.E. has supported a number of screenings and taken part in Q&As accompanying…
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DWP drops target for upholding benefit decisions

December 18, 2017

Sarah Newton MP, Minister for Disabled People, Health and Work, has announced that the Department for Work and Pensions (DWP) has dropped its target for 80% of benefit decisions to…
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Fundraiser of the Week - Lauren Kendrick

December 15, 2017

Our fundraiser of the week is Lauren Kendrick, who took part in the Equinox 24 hour race at Belvoir Castle back in September.Lauren was joined by members of her family and friends,…
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Families affected by M.E. attend Downing Street

December 13, 2017

Five families affected by M.E. attended the 10 Downing Street children's Christmas party this week, accompanied by Mary-Jane Willows, Head of Children's Services at Action for M.E. We…
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InterAction 97 is now out: got your copy?

December 12, 2017

The Christmas 2017 issue of our membership magazine InterAction is out now. It’s packed with the latest M.E.-related news and features, campaigns and research updates, as well as medical…
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​Government sets out disability employment strategy

December 11, 2017

The UK Government has announced a strategy to improve employment for disabled people. Action for M.E. responded to the consultation that informed this strategy, highlighting how some…
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Webinar recording now online

December 11, 2017

A recording and the slides from our latest educational webinar for primary healthcare professionals are now available to view in the Health and Care Professionals section of our website.‘Meeting…
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Fundraiser of the week: Manus Noble

December 08, 2017

Our fundraiser of the week is Manus Noble, a fantastic contemporary guitarist who is putting his considerable skills to great use.We love his Covers for others project, which offers…
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​Updating the NICE guideline: next steps

December 06, 2017

The review of the National Institute of Health and Care Excellence (NICE) guideline for M.E. will pay careful attention to the experiences and views of patients and clinicians, a Director…
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Big Give Christmas Challenge raises over £121,000

December 05, 2017

The Big Give Christmas Challenge has drawn to a close today and thanks to your incredible support we’ve raised an amazing £121,116 including Gift Aid!The support we’ve received from…
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Christmas card competition: send your festive photos

December 05, 2017

We are looking for a fantastic festive photograph to turn into Christmas card to be sold as part of our 2018 Christmas card range. This year, our winner was Christmas Fir by John Wright.Please…
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"I feel like I walk a tightrope with my energy levels"

December 04, 2017

“Action for M.E.'s resources, including their guides about coping with M.E. at work, have been brilliant and really useful” says Hattie, age 27. “I have had a lot of sick days in the…
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Fundraiser of the week - Sean Weller

December 01, 2017

Our fundraiser of the week is Sean Weller, who’s been hosting a gaming livestream today.Sean, who describes himself as a YouTube gamer from England, has kindly decided to donate half…
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"I have lost all friends now"

December 01, 2017

"Fatigue and widespread pain are my worst problems. I'm in a wheelchair, bed-bound for days at a time and in pain 24 hours a day. It means I can't leave the house very often and feel…
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Big Give donations top £100,000

November 30, 2017

Thanks to our brilliant supporters, donations to our Big Give Christmas Challenge have just topped £100,000 - which means our match-funding pot has run out, and donations can no longer…
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"It's hard seeing all your friends living their lives"

November 30, 2017

"I was working for a property developer in London at the time, always the one to stay for one more drink at the end of the night and putting in the hours to try and progress my career"…
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"Action for M.E. has helped me massively"

November 29, 2017

"The worst thing is feeling so helpless, that I can’t find anything to work for Abbi, or help her – and battling with other people and the school, and close family and friends, who…
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#GiveBig for M.E. and see your donation doubled

November 28, 2017

Today marks the start of The Big Give Christmas Challenge 2017, which runs from noon on Tuesday 28 November to noon on Tuesday 5 December. During this time, every donation we receive…
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Your donations doubled for Big Give next week

November 24, 2017

“M.E. is not just tiredness, it is pain, confusion, image changes physically and mentally, we hurt, some may argue more than others. M.E. is a life-changing disability and it slows…
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Fundraiser of the week - Meike Scheller

November 24, 2017

Our fundraiser of the week is Meike Scheller, who raised £54.27 for us during a screening of Unrest at Bath University.Meike organized the screening of Jen Brea’s film and put out collection…
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Autumn Budget 2017: what to expect

November 22, 2017

Philip Hammond, Chancellor of the Exchequer, will deliver the UK Budget today and outline planned changes to spending, some of which are likely to affect people with M.E.One area where…
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Webinar for healthcare professionals next Thursday

November 21, 2017

There's just over a week to go until our new webinar aimed at educating healthcare professionals about M.E. launches online.Meeting the needs of people with M.E./CFS – essential facts…
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Fundraiser of the Week - David Fisher

November 17, 2017

Our fundraiser of the week is David Fisher, who’s raised over £900 for us through collection tins at his local rugby club.David has been leaving our collection tins at The Annan Rugby…
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Finance, children's services and Unrest film at AGM

November 16, 2017

People with M.E., their carers and professionals shared their views and experiences of the illness with staff, Trustees and volunteers at our 2017 Annual General Meeting (AGM) and conference…
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Raising concerns about M.E. in Scottish Parliament

November 14, 2017

Action for M.E. has raised concerns about the lack of awareness and understanding of M.E./CFS among health professionals at the Scottish Parliament today.Clare Ogden, Head of Communications…
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Join Team Action for M.E. for the Bath Half

November 13, 2017

General entry places have now SOLD OUT for the Bath Half, but there’s still time to join Team Action for M.E. We’re looking for a record-breaking year in 2018, and we need your help…
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Fundraiser of the week - Chelsea Higgott

November 10, 2017

Our fundraiser of the week is Chelsea Higgott, who held a quiz night at her local pub, The Chadwick Arms.Chelsea has held the event in previous years to raise money for the charity…
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New webinar for healthcare professionals coming soon

November 09, 2017

A new webinar aimed at educating healthcare professionals about M.E. will be launched later this month.Meeting the needs of people with M.E./CFS – essential facts and practical tips…
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Action for M.E. attending launch of Oceans 7

November 08, 2017

Action for M.E. is delighted to support a new film, currently in production, that tells the story of Beth French, who set out to swim the seven most dangerous sea-channels in the world…
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PIP changes could benefit people with M.E./CFS

November 08, 2017

New changes have been made to Personal Independence Payment (PIP) that could make it easier for people with M.E./CFS to claim the benefit. Describing the changes, our Welfare Benefits…
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