• Help us to support others – donate now and change a life

    Donate now

News

  • A
  • A
  • A
Text size

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…
Read more >>


Aged 13 - 23 and have M.E./CFS in Scotland?

December 17, 2018

Aged 13 - 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 biggest…
Read more >>


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…
Read more >>


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…
Read more >>


CMRC Board meeting: latest update

December 04, 2018

Minutes 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 partnership…
Read more >>


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…
Read more >>


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…
Read more >>


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…
Read more >>


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…
Read more >>


​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…
Read more >>


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…
Read more >>


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…
Read more >>


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.…
Read more >>


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…
Read more >>


​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…
Read more >>


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…
Read more >>


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…
Read more >>


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,…
Read more >>


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…
Read more >>


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…
Read more >>


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…
Read more >>


​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…
Read more >>


​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…
Read more >>


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…
Read more >>


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…
Read more >>


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…
Read more >>


​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…
Read more >>


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…
Read more >>


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…
Read more >>


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.…
Read more >>


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…
Read more >>


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,…
Read more >>


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…
Read more >>


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…
Read more >>


​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)…
Read more >>


​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…
Read more >>


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…
Read more >>


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…
Read more >>


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…
Read more >>


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,…
Read more >>


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.…
Read more >>


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…
Read more >>


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,…
Read more >>


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…
Read more >>


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…
Read more >>


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…
Read more >>


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…
Read more >>


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…
Read more >>


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…
Read more >>


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,…
Read more >>


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…
Read more >>


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,…
Read more >>


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…
Read more >>


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…
Read more >>


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…
Read more >>


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.…
Read more >>


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…
Read more >>


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…
Read more >>


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…
Read more >>


​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…
Read more >>


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…
Read more >>


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…
Read more >>


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…
Read more >>


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…
Read more >>


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.…
Read more >>


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…
Read more >>


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…
Read more >>


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…
Read more >>


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…
Read more >>


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…
Read more >>


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…
Read more >>


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…
Read more >>


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…
Read more >>


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…
Read more >>


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,…
Read more >>


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…
Read more >>


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…
Read more >>


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…
Read more >>


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…
Read more >>


​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…
Read more >>


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…
Read more >>


​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…
Read more >>


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…
Read more >>


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,…
Read more >>


​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…
Read more >>


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.…
Read more >>


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…
Read more >>


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…
Read more >>


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…
Read more >>


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…
Read more >>


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…
Read more >>


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…
Read more >>


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,…
Read more >>


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…
Read more >>


​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…
Read more >>


​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…
Read more >>


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.…
Read more >>


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…
Read more >>


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,…
Read more >>


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…
Read more >>