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Have you received good or poor care?

February 20, 2019

The Care Quality Commission (CQC) is asking people who have experienced good or poor care to let them know by completing an online form anonymously. They are seeking views of a wide…
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Department of Transport Blue Badge eligibility workshop

February 18, 2019

Action for M.E. has attended a workshop with representatives from the Department of Transport to discuss changes to the Blue Badge eligibility guidance. In 2018 the Government announced…
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​Latest research: Onset patterns and more

February 15, 2019

Supporting you to stay informed about M.E. research, we aim to publish regular round-ups of papers published in peer-reviewed journals. Please note this is not an exhaustive list…
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NICE guideline review: for children and young people

February 14, 2019

The National Institute for Clinical Excellence (NICE) are reviewing their guidance titled, “children and young people with disabilities and severe complex needs: integrated health and…
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Scottish National Action Plan consultation - our response

February 13, 2019

Action for M.E. has submitted a response to the Scottish Government’s consultation on the National Action Plan on Neurological Conditions. Our response highlights several areas of concern…
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Fundraiser of the week - Bron's Vegan Brownies

February 08, 2019

Our fundraiser of the week is Bron’s Vegan Brownies – an independent business set up by 18 year old Bron. When speaking about her daughter’s business Elaine, her mother, says: “Super…
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​Educate M.E. awareness raising session South Ayrshire

February 08, 2019

Teachers in South Ayrshire have been learning about the impact of M.E. and how to support young people with the condition, thanks to Action for M.E.’s Educate M.E. project in Scotland.…
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InterAction needs you: managing sleep

February 06, 2019

In the spring issue, our Medical Advisor Dr Gregor Purdie will be taking a look at sleep disturbances. These are common for people with M.E. and/or CFS and can include unrefreshing…
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Fundraisers of the week - Walk with M.E. teams

February 01, 2019

Exciting news! Today is the official launch of Walk with M.E. 2019 and it’s already looking to be our biggest year yet. We'd like to celebrate the launch by making all of our walkers…
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​What you need to know about Winter Fuel payments

January 30, 2019

Are you born on or before 5 November 1953? You may be entitled to a Winter Fuel payment. What is it? A Winter Fuel payment is a one-off, tax-free payment of between £100 and £300…
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Scottish Parliament discussion of M.E. during Petitions Committee

January 30, 2019

Thursday 24 January was a busy day for the M.E. community with debates being held in both UK and Scottish Parliament. The Scottish Petitions Committee was attended by Scotland’s Chief…
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Minutes now available: CMRC January board meeting

January 28, 2019

Minutes from January’s meeting of the Board of the UK CFS/M.E. Collaborative (CMRC) are now available to read. This gives updates on:Medical Research Council Strategy Board – a paper…
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Important update: our Information and Support Service

January 25, 2019

Action for M.E.’s Information and Support Service will be closed for one week from Monday 27 January to Friday 1 February. Due to staff sickness affecting capacity, and considerably…
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Parliamentary debates on M.E. on 24 January

January 25, 2019

"It’s actually quite remarkable to consider how little is being sent on research, it's something like 0.02% of all active grants given by mainstream funding agencies going to support…
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Commons debate on M.E. at 2pm today

January 24, 2019

Carol Monaghan MP, Member of the UK Parliament for Glasgow North West, will lead a House of Commons debate on M.E. at 2pm today.This follows her Westminster Hall debate in June on research…
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InterAction 100 now available in audio format

January 21, 2019

The winter issue of our membership magazine, InterAction, is now available to stream or download in audio format via Soundcloud.This edition of InterAction is special as it is the 100th…
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Have your say - support for your M.E. in school

January 18, 2019

Action for M.E. wants all children living with M.E./CFS to get the support they need in school. We need to make sure we are focusing on the issues that matter most to families affected.…
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Commons debate on M.E. confirmed for 24 January

January 17, 2019

Carol Monaghan MP, Member of the UK Parliament for Glasgow North West, has confirmed that the Backbench Business Committee has agreed to a debate on M.E. taking place next Thursday.Following…
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Scottish government launches National Action Plan

January 16, 2019

The Scottish Government has published a draft National Action Plan on Neurological Conditions. It sets out the vision of improving diagnosis, treatment and care of people with neurological…
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LGO ruling on access to education

January 15, 2019

Action for M.E. has been working with 16-year-old Maddie, who lives in Hayle, Cornwall, where the Local Government and Social Care Ombudsman (LGO) has made a ruling against the Council…
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Fundraisers of the week - EHU Marvel Society

January 11, 2019

We’d like to say thank you to the Edge Hill University Marvel Society, who have chosen to raise money and awareness for our charity. They will be hosting an event on the 22 January…
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​Forward ME's CBT and GET patient survey

January 11, 2019

Forward M.E. has launched a survey to gather evidence and experiences of Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT).The National Institute of Health and Care…
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Join us for Walk with M.E. 2019

January 09, 2019

Whoever you are, wherever you are, help us Walk with M.E. Walk with M.E. is a sponsored walk with a twist: everything is done as a team. This means you can take part if you would like…
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Action for M.E. hosts DWP spotlight training

January 07, 2019

A range of people from the Department for Work and Pensions had the opportunity to learn more about M.E. and its impact on claimants, in a training session led by Action for M.E. just…
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Fundraiser of the week - Alice

January 04, 2019

We’d like to say thank you to our fundraiser of the week Alice who will be running the London Marathon in 2019 in memory of her best friend Katie, who passed away in 2015.“The charity…
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Fundraiser of the week - Emily

December 28, 2018

We'd like to say thank you to our fundraiser of the week Emily Price, a singer who has been raising money for our charity by selling CDs.The album is inspired by Christmas and features…
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Fundraiser of the week - Rebecca

December 21, 2018

Our fundraiser of the week is 11-year-old Rebecca who has been raising money for our charity by selling handmade jewellery. Diagnosed with M.E. two years ago, Rebecca has done amazingly…
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Commons' Science and Technology Committee enquiry

December 18, 2018

In October, the House of Commons’ Science and Technology Committee asked the public to inform them on potential areas of scrutiny. The committee expressed an interest to hear suggestions…
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Aged 13 to 23 and have M.E./CFS in Scotland?

December 17, 2018

Are you aged 13 to 23 and living with M.E./CFS in Scotland? We want to hear from you! Schools can struggle to get it right for children and young people with M.E. Although M.E. is the…
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ME Highland and Islands Network partnership

December 12, 2018

Action for M.E. have partnered with the ME Highland and Islands Network (ME Highlands) in order to reach more people with M.E. in Scotland. ME Highlands works to highlight the lack…
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Info and Support Service: welfare benefits referrals

December 06, 2018

Action for M.E. offers a free Information and Support Service for young people and adults with M.E., and their carers and family. Our friendly Information and Support team understand…
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CMRC Board meeting: latest update

December 04, 2018

A short written report from last month's meeting of the Board of the UK CFS/M.E. Collaborative (CMRC) are now available to read on our CMRC page, giving updates on:the CMRC's priority-setting…
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IAFME submits trans-national consensus document to WHO

December 04, 2018

The International Alliance for Myalgic Encephalomyelitis (IAFME) has produced a trans-national consensus document covering Myalgic Encephalomyelitis (M.E.). Recognition, research and…
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Improving lives, inspiring change: AGM & annual report

November 30, 2018

"The most important feature of Forward M.E. is that we work together for the common good; never was the principle of 'divide and rule' more prevalent than in the word of M.E." said…
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Big Give Christmas Challenge- what you need to know

November 26, 2018

The Big Give Christmas Challenge will be starting at noon tomorrow, and will run until midday on Tuesday the 4 December. Throughout this week any donation made to us through the Big…
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Fundraiser of the week - Big Give pledges

November 23, 2018

This week’s fundraiser of the week is everyone who has pledged to donate to us during the Big Give Christmas Challenge that starts at noon next Tuesday. In particular, we would like…
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​We need your help! Connect M.E. survey

November 20, 2018

Action for M.E. are testing out an idea we have for a new project that could potentially help support people with M.E. nationwide.This project would aim to link healthy volunteers with…
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Temporary phone-line maintenance

November 20, 2018

From noon today, the office phone-lines will be temporarily down as we undergo essential maintenance to our phone system. These improvements will mean that we are better able to provide…
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Fundraisers of the week - Bowls Cornwall club

November 16, 2018

Action for M.E. would like to say a huge thank you to our fundraisers of the week- the Bowls Cornwall club- for raising £1,200 on behalf of our charity. Peter Prynne presented a check…
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Can you help? Run a stall this Christmas

November 15, 2018

Can you help us? Action for M.E. are looking for volunteers to help us raise critical funds and awareness to support the 250,000 children, young people and adults living with M.E.…
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NICE guideline development committee update

November 13, 2018

Action for M.E. welcome the appointment of Dr William Weir to the National Institute for Health and Care Excellence (NICE) guideline development committee. Dr Weir is currently the…
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​Welfare Advice and Support Service now open

November 12, 2018

We are pleased to announce that our Welfare Advice and Support Service has re-opened, following a period of temporary closure. Please call our Information and Support line on 0117…
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Thank you to everyone who participated in RideLondon

November 08, 2018

All of us at Action for M.E. would like to say a huge thank you to Peter Wharton, Alistair and Pete Hughs, who formed our small, but amazing 2018 Prudential RideLondon – Surrey 100…
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Latest Research: post-exertional malaise & more

November 07, 2018

Trigger warning: this post features content of a sensitive nature regarding suicide. Supporting you to stay informed about M.E. research, we publish regular round-ups from Action for…
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Have your say: new Standards for Neurological Care

November 05, 2018

It is estimated that as many as a million adults in Scotland are living with a wide range of complex and life-changing neurological conditions. As neurological diseases are so diverse,…
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Fundraiser of the week- Clare Wills

November 02, 2018

Our fundraiser of the week is Clare Wills, who will be running the London Landmarks Half Marathon in March on behalf of Action for M.E. “My Mum is the inspiration for me running the…
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Great North Run 2019 (Charity fundraising places)

November 02, 2018

Are you thinking of taking on a sporting challenge next year? Join Action for M.E. for the Great North Run 2019 and have the opportunity to raise funds and awareness for M.E., a life-stealing…
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Mentor M.E. confirmed funding from ALLIANCE

November 01, 2018

The Mentor M.E. peer support network is a five-year Action for M.E. project, launched in 2016, and funded by the Scottish Government and the Health and Social Care Alliance Scotland…
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​Welfare Advice and Support Service update

October 31, 2018

Earlier this month, we shared an update about our Welfare Advice and Support Service, which was experiencing a very high level of requests for support. In order to ensure that we are…
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​Action for M.E. annual AGM conference: Get involved

October 31, 2018

Action for M.E.’s staff, Trustees and volunteers are delighted to invite you and your family, friends and colleagues to our 2018 AGM and conference. Where: Allen & Overy LLP, One Bishops…
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Be an angel this Christmas: Join now

October 30, 2018

This Christmas will be the eighth year that we have run our Action for M.E. Christmas Angel project whereby people with M.E. can send Christmas cards to each other via the Action for…
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Regional Advocacy Service

October 29, 2018

Next year we will launch our new Regional Advocacy Service which will cover the Midlands and South West to ensure that people affected by M.E. are able to secure services, care and…
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Fundraiser of the week- Leigh Walker

October 26, 2018

A huge thank you to our Fundraiser of the week Leigh who will be holding a series of live streams over the next two weeks. His videos will showcase the latest games as well as some…
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​NICE guideline scope and committee: update & comment

October 25, 2018

Our updated comment can be found at the bottom of the article. The final version of the National Institute for Clinical Excellence (NICE)’s scope for its revised guideline on M.E./CFS…
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Celebrating ten years of Forward M.E.

October 23, 2018

Margaret, Countess of Mar marks ten years of Forward M.E. today, meeting with staff and Trustees from the charities with which she collaborates, including Action for M.E., at the House…
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Fundraiser of the week- Lizzie Carswell

October 19, 2018

Congratulations to our Fundraiser of the Week, Lizzie Carswell, who has nearly reached her fundraising goal of £1,000!Lizzie plans to run 365 kilometres by November on behalf of her…
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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

Update: Applications for this have now closed. The Patient Advisory Group (PAG) to the UK CFS/M.E. Research Collaborative (CMRC) is recruiting a number of new adult members, based in…
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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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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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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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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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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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