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Fundraiser of the week - Elizabeth Carswell

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…

Tributes paid to Professor Norman E. Booth

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…

Fundraiser of the week - supporting severely affected

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…

Today is Severe M.E. Day

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.…

GP system updated to reflect M.E. as neurological

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…

Action for M.E. responds to NICE consultation

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…

Fundraiser of the Week - Devonshire House

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…

Fundraiser of the week - Peter Wharton

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…

Action for M.E. launches advocacy service

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…

New study brings M.E. test closer

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…

Support available for students with M.E.

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…

Fundraiser of the week - Katie Collins

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…

Raising awareness with Work and Pensions Committee

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…

Fundraiser of the week - Haywoods Group

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,…

2018 research conference programme announced

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…

NICE consultation feedback now open to carers

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…

Correcting some inaccuracies about us and our work

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…

Fundraiser of the week - Adam Chivers

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…

​NICE ask for input on guideline on M.E./CFS

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…

Parliamentary debate on M.E. - our summary

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…

​Action for M.E. to sign open letter to Lancet

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…

Fundraiser of the week - Rob Bold

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…

Experiences of M.E. featured in Dear Chronic Illness

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,…

​InterAction now available in audio format

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…

Fundraiser of the week - Leanne Towart

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.…

Westminster treatment and research debate confirmed

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…

Scottish Parliament event recording now online

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…

Fundraiser of the week - Claire Green

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…

Welfare line to re-open soon

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…

Action for M.E. attending NICE guideline meeting

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…

Taking action on Personal Independence Payment

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,…

New biomedical research PhD launched in Scotland

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…

​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…

​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…

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.…

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…

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,…

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…

​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…

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…

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…

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…

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…

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…

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…

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…

​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…

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…

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…

"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…

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:…

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…

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…

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…

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.,…

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…

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…

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…

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,…

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,…

​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…

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.…

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…

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…

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…

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…

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…

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…

​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…

​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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

​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…

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…

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…

​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…

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…

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…

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…

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…

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…

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…

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 –…

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…

​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…

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…

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…

#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,…