August 17, 2018
Our fundraiser of the week is Elizabeth Carswell, who is doing a charity run because her sister Sheena has M.E. Elizabeth said: “As a result of this horrible illness, my sister has…
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August 13, 2018
Action for M.E. is saddened to hear of the passing of Professor Norman E. Booth, who passed away last week. Professor Booth, of the University of Oxford, had previously studied mitochondrial…
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August 09, 2018
This week, we celebrate three of our Great North Run fundraisers who have chosen to run on behalf of loved ones who are severely affected or have suffered major relapses. Some have…
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August 08, 2018
August 8 is Severe M.E. Day, an international day of awareness focused on those who are severely affected by M.E. Around one in four people with M.E. are severely affected by the condition.…
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August 01, 2018
The latest update to the electronic health records system used by GPs in England was launched yesterday, listing M.E. as a neurological disorder. Previously it had sat under the headings…
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July 26, 2018
We’ve been gathering your feedback for weeks and now Action for M.E. have responded to the National Institute for Health and Care Excellence’s (NICE) consultation on the draft scope…
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July 20, 2018
Our fundraiser of the week is Devonshire House Preparatory School, whose students held a film night for Action for M.E. on Wednesday 27 July.Students organised two movies to be shown…
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July 13, 2018
Our fundrasier of the week is Peter Wharton, who is taking part in the Ride London Surrey 100 for us because his wife Swee-Fong has been diagnosed with M.E./CFS.Talking about her experiences…
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July 11, 2018
Action for M.E. is pleased to announce that we are in the early stages of launching a new pilot service that will provide direct advocacy to people affected by M.E. in the Midlands…
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July 10, 2018
A test to help recognise M.E./CFS could be closer than ever thanks to a new study led by researchers at the Centre for Infection and Immunity (CII) at Columbia University's Mailman…
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July 09, 2018
If you’re a student or the parent of a student who has M.E. you might want to check out the DSA Claim It! campaign, which offers advice and information about Disabled Students' Allowances…
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July 06, 2018
Our fundraiser of the week is Katie Collins, who is taking part in the Cotswold Way Challenge.Taking place from Saturday 30 June to Sunday 1 July, the challenge involves walking 100km…
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July 03, 2018
Action for M.E. has submitted evidence to the Work and Pensions Committee highlighting the reality of living with M.E.The parliamentary committee, whose role is to scrutinise the work…
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June 29, 2018
Our fundraiser of the week is the Haywoods Group, who are undertaking the Otillo 1000 lakes SwimRun for Action for M.E.Taking place on September 30 in Mecklenburger Seenplatte, Germany,…
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June 27, 2018
The full programme for this year’s UK CFS/M.E. Research Collaborative conference has now been announced.Conference speakers already confirmed include: Prof Cathie Sudlow, UK Biobank…
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June 26, 2018
Following feedback from people affected by M.E., we have amended our survey on the NICE consultation so that you are able to indicate that you are responding as a carer.We are asking…
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June 26, 2018
We have been made aware of a statement and petition online which raises a number of questions and concerns about Action for M.E.We would like to make it very clear that this statement…
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June 22, 2018
Our fundraiser of the week is Adam Chivers, who is running the British 10km race on Sunday, 15 July.Adam, who has raised over £300 so far, is taking part in the event for us because…
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June 22, 2018
The National Institute for Health and Care Excellence (NICE) have released a draft scope for its revised guideline on M.E./CFS, and are asking for applications from people affected…
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June 21, 2018
“At the moment M.E. receives practically no funding in terms of biomedical research…the treatments that are currently available are often more damaging to the person than no treatments…
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June 20, 2018
Yesterday, Prof Vincent Racaniello, Columbia University, sent a letter to The Lancet about the PACE trial, asking the journal to “commission an independent re-analysis of the individual-level…
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June 15, 2018
Our fundraiser of the week is Rob Bold, who is taking part in a skydive to raise money for us because his wife has M.E.Rob said: “I recently turned 40 and for my present off the wife…
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June 14, 2018
Our supporter Pippa Stacey has released a compilation book featuring multiple contributors sharing their experiences of varying severities of M.E.The book, titled Dear Chronic Illness,…
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June 13, 2018
Our Membership magazine, InterAction, is now available to stream or download in audio format. Just visit our Soundcloud page and click the ‘play’ icon on the article(s) you want to…
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June 08, 2018
Our fundraiser of the week is Leanne Towart, who will take on the Great North Run challenge in aid of her friend Nicola, who lives with severe M.E.Leanne said: “People with severe M.E.…
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June 07, 2018
A debate on M.E. treatment and research will be held in Westminster Hall on 21 June and we need your MP to attend!The debate comes after Carol Monaghan MP, Member of the UK Parliament…
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June 05, 2018
Audio recordings of a special event at the Scottish Parliament hosted by Gail Ross MSP and supported by Action for M.E. are now available to listen to online.The event recording has…
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June 01, 2018
Our fundraiser of the week is Claire Green, whose team from Thomas and Adamson ran the Edinburgh Relay Marathon on May 27 to raise an amazing £1,346 for us.Claire, who was unable to…
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June 01, 2018
Action for M.E. is pleased to announce that our Welfare Advice and Support Service will be open again by mid to late June. We have recruited a new welfare rights advisor and aim to…
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May 25, 2018
Action for M.E. will be representing people affected by M.E. at a workshop held by the National Institute of Health and Care Excellence (NICE) today to inform their development of an updated…
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May 25, 2018
We frequently hear from people with M.E. about the problems claiming Personal Independence Payment (PIP), such as the assessment process not taking fluctuating symptoms into account,…
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May 24, 2018
Action for M.E. and the Scottish Government’s Chief Scientist’s Office are delighted to announce our jointly funded PhD studentship in biomedical M.E. research.Prof Chris Ponting, University…
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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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