October 16, 2018
The National Institute for Health and Care Excellence (NICE) has published its final scope for its updated guideline on M.E./CFS, along with consultation comments and committee appointments.…
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October 16, 2018
We want you to have your say – we can share the welfare benefit issues that matter to you with your MP. Thanks to the War on Welfare petition, a debate has been secured at the House…
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October 12, 2018
Congratulations to Grant Watling who has been chosen as our fundraiser of the week. Grant has kindly chosen to fundraise for us when he takes on the Nuclear Races in May next year,…
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October 09, 2018
The Patient Advisory Group (PAG) to the UK CFS/M.E. Research Collaborative (CMRC) is recruiting a number of new adult members, based in the UK. The closing date for applications is…
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October 09, 2018
Our welfare advice and support service is currently
experiencing a very high level of requests for support. In order to ensure that we
are able to provide a good-quality service to…
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October 08, 2018
The Autumn issue of 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)…
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October 05, 2018
On 19 and 20 September, the UK CFS/M.E. Research Collaborative (CMRC) welcomed people living with M.E., scientists, clinicians and industry experts to its fifth annual science conference…
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October 05, 2018
Our fundraiser of the week is our supporter Francis and her sister Liza, who has kindly sent us her beautiful handmade angels for us to sell in our shop. Each angel comes as part…
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October 04, 2018
Dr Gregor Purdie, Medical Advisor, Action for M.E., will join two other clinicians to lead Forward M.E.’s workshop at the RCGP conference in Glasgow today. Chaired by Prof Kamila…
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September 29, 2018
Today marks Action for M.E.’s last match as official sponsors of Notts County FC for the month of September, with their game against Crewe Alexandra.Sonya Chowdhury, our Chief Executive,…
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September 28, 2018
Congratulations to our Fundraiser of the Week, Scarlett Tomes, who will be taking on the Oxford Half Marathon next month. Scarlett is running for her mum, who was diagnosed with M.E.…
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September 27, 2018
Getting out and about when you have M.E. can pose real challenges, especially for those with limited mobility. We’d love to hear your experience, ideas and tips for travel aids and…
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September 26, 2018
This year we had 3 fantastic runners in the British 10K London Run, raising money for our work and awareness of M.E. with their Action for M.E. branded running vests.Together Owen,…
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September 25, 2018
Forward M.E. charities, including Action for M.E., will host an exhibition stand and workshop at next month’s Royal College of General Practitioners (RCGP) conference in Glasgow – please…
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September 21, 2018
Congratulations to Robert Godsell who has been chosen as our Fundraiser of the Week! He is taking on the SimplyHealth Great South Run 2018 for his wife, Lorraine, who was recently diagnosed…
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September 17, 2018
We would like to say an enormous thank you to our two volunteers, Sue and Sue, Notts County FC and to all those who donated to Action for M.E. during our bucket collection at Meadow…
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September 14, 2018
Congratulations to Notts County FC, our Fundraiser of the Week! As part of our one-month sponsorship of the club, generously donated to us by one of our supporters, Notts have kindly…
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September 13, 2018
“Inspiring speakers – liked the discussions – lovely venue and great lunch” are what you can expect from Action for M.E.’s 2018 Annual General Meeting (AGM) and conference, according…
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September 10, 2018
The Scottish Liberal Democrats voted to support a motion on M.E. at their party conference on Saturday, calling for a number of actions, including the removal of graded exercise therapy…
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September 07, 2018
Congratulations to Rob Findlow, who has been chosen as our fundraiser of the week and has raised an incredible £547 in just 8 days! Rob is running the Wigan 10k for his wife, Lorna,…
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September 06, 2018
InterAction 99 is out now and will be landing on the doorsteps of our Supporting Members over the next few days. Audio copies of the article will be available on our Soundcloud in the…
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September 03, 2018
Are you a football fan? Do you or a keen supporter in your family struggle to attend games because of M.E.? As part of Action for M.E.’s September sponsorship of Notts County FC,…
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September 01, 2018
We are thrilled to have been gifted sponsorship of Notts County FC, the world’s oldest football club, for the month of September, by one of our longstanding supporters.The team – known…
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August 31, 2018
Our fundraiser of the week is David Furness. David has chosen to run the Great North Run 2018 for Action for M.E. because of his personal experience with the illness. David said “I…
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August 31, 2018
Due to staff illness, we are sorry to inform you that our Information & Support and Welfare Advice lines will be closed for the remainder of Friday 31 August. Normal hours will resume…
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August 29, 2018
This statement sets out our position on the PACE trial and behavioural treatments for M.E. In the past, Action for M.E.’s strategy was to support all forms of research into M.E.…
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August 28, 2018
Action for M.E. has updated our five-year strategy for 2016 – 2021 to include our promises to children, young people and families living with M.E. Following the launch of our new…
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August 24, 2018
“To function, and live life enjoyably, I have to plan, plan, plan and sometimes say no to things or cancel, to ensure my body will be able to cope with day-to-day life. It is a continuous…
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August 23, 2018
Making M.E. the focus of his Drivetime show today on BBC Radio London, Eddie Nestor MBE will hear from people living with M.E. about the impact of the condition on school, work and…
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August 22, 2018
Would your secondary school benefit from an awareness- raising session? M.E. is the main cause of long-term absence from schools. Yet there is very little awareness and understanding…
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August 22, 2018
This year’s annual UK CFS/M.E. Research Collaborative (CMRC) conference is taking place at the Future Inn, Bristol on Wednesday 19 and Thursday 20 September. This will be the first…
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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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Registered in Scotland: SC040452.
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