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NICE publishes final scope for M.E./CFS guideline

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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Welfare debate: Let us contact your MP

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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Fundraiser of the week: Grant Watling

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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Applications invited for CMRC Patient Advisory Group

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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Welfare line update: temporary two-week closure

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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​InterAction 99 available now on Soundcloud

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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​CMRC2018 conference: first films now available

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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Fundraiser of the week - Francis and Liza

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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Highlighting M.E. at RCGP conference today and Friday

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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Didn't get a London Marathon ballot place? Run for us!

October 03, 2018

Do you know anyone interested in taking on the world famous London Marathon next April? The results of the ballot for own places is announced this week - if they weren't selected, we'd…
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Action for M.E. and Notts County FC: the last match

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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Fundraiser of the Week: Scarlett Tomes

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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Out and about with M.E.

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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British 10k total

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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A​ction for M.E. and Forward M.E. at GP conference

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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Fundraiser of the Week: Robert Godsell

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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The 2018 CMRC conference is underway

September 19, 2018

Today is the first day of the 2018 CFS/ME Research Collaborative conference. We are thrilled to get started and excited to hear the most recent research updates from today’s speakers.…
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Managing type 2 diabetes alongside M.E.

September 18, 2018

In the latest issue of our membership magazine, InterAction, Dr Gregor Purdie answered a reader’s question about type 2 diabetes. He is keen to hear other people’s experiences of managing…
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Saying thank you to the Notts County FC community

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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Fundraiser of the week: Notts County FC

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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Action for M.E.'s 2018 AGM and Conference

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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Scottish Liberal Democrats adopt new policy on M.E.

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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Fundraiser of the week: Rob Findlow

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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InterAction 99 has been released

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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Join us at Notts County FC this month

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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Come on, you Pies! Action for M.E. and Notts County FC

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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Fundraiser of the week: David Furness

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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Closure of phone lines - Friday 31 August

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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The PACE trial and behavioural treatments for M.E.

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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Our promises to children and young people with M.E.

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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Fundraiser of the week: Renée de Nève

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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M.E. on BBC Radio London Drivetime show today

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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​Raising awareness of M.E. in a school near you

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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Book now: UK CMRC conference 2018

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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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…
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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…
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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…
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Meet others with M.E. in Glasgow at our taster session

August 09, 2018

Want to find out more about the services and support Action for M.E. offers in Scotland - and meet others living with the condition? We are hosting a health and wellbeing taster and…
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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.…
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Fundraisers of the week - National Citizens Service

August 03, 2018

Our fundraisers of the week this week are a group of National Citizens Service's volunteers, Cohort 2 Summer 2018, who are taking part in a fundraising dip at Blyth Beach, Northumberland.They…
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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…
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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…
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Notts County FC to help raise awareness of M.E.

July 24, 2018

Notts County Football Club will be helping raise awareness of M.E. later this year after making Action for M.E. one of the club’s official shirt sponsors for the new season.Action for…
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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…
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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…
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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…
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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…
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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…
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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…
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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…
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First episode of M.E., myself and I out now

July 02, 2018

M.E, myself and I tells the story of Rachel, a 19 year old girl living with M.E. and how she uses her favourite TV character to get through her daily struggles with the illness.This…
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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,…
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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…
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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…
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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…
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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…
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​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…
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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…
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​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…
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Financial help for students to attend CMRC 2018

June 19, 2018

The ME Association will be funding up to six student awards of up to £350 to help cover the cost of travel, accommodation and the registration fee for students.Applications can be made…
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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…
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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,…
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​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…
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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.…
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Latest research roundup: Rituximab effects and more

June 07, 2018

Latest research: standing unaided, glucose and muscle cells and moreSupporting you to stay informed about M.E. research, we publish regular round-ups from Action for M.E. volunteer…
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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…
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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…
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Our latest funded PhD: brain function in M.E.

June 04, 2018

Action for M.E. is delighted to announce its latest PhD studentship in biomedical M.E. research.Following our rigorous Research Funding Assessment Process, our Board of Trustees has…
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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…
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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…
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People with M.E. must be heard, says NICE committee

May 29, 2018

Action for M.E. joined stakeholders from patient groups, charities, and professional bodies to take part in Friday's workshop on the scope of the National Institute of Health and Care…
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Fundraiser of the Week - Lucy Goodwill

May 25, 2018

Our fundraiser of the week is Lucy Goodwill, who is selling M.E.-related zines at lucycreates.bigcartel.comZines are small-circulation self-published works. The ones Lucy creates are…
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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…
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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,…
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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…
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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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IAME's letter to the WHO for M.E. Awareness Day

May 12, 2018

The International Alliance for M.E. (IAME), based in Geneva, is a collaboration between M.E. organisations across the world, including Action for M.E. and Forward ME, led by the Countess…
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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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Your chance to show the world that #ThisisME

May 07, 2018

We know that having M.E. can be a lonely experience that can make it hard to get your voice heard. M.E. can affect different people in different ways and one person’s experience of…
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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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Fundraisers of the week: our London Marathon team

April 20, 2018

The sun is expected to shine on the 50,000 runners taking part in this Sunday's 2018 London Marathon - and among them are 17 very special fundraisers. Action for M.E.'s 17-strong team…
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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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