News

Disability tax update

September 24, 2020

The Chancellor has announced that there will no longer be an Autumn Finance Statement, within which there had been proposals to introduce a new tax on online shopping. The proposed…

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Useful resources following yesterday’s Covid-19 restrictions

September 23, 2020

With yesterday’s announcement about new UK restrictions relating to Covid-19, we know lots of you may be feeling concerned, let down and frustrated. While for many with M.E., lockdown…

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Fundraiser of the week: Penny's sister Eleanor

September 18, 2020

“I want Penny to live life to the fullest and to not miss out on seeing friends, travelling or even something so simple as going to school."Eleanor Braham's younger sister Penny has…

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Facebook fundraiser of the week: 14-year-old Hugh

September 16, 2020

Hugh recently celebrated his 14th birthday. He was diagnosed with M.E./CFS when he was eight years old. He told us:"It was hard especially after just recovering from an excruciating…

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Going to university: information, support and advice

September 14, 2020

Starting or returning to university this year presents many challenges for students. Those with M.E. may find themselves able to access remote learning more easily, given the circumstances…

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Fundraiser of the week: Andrew Maybury

September 11, 2020

Our fundraiser of the week, Andrew Maybury, is taking part in the Great North Run Reimagined on Sunday.It’s a challenge that the majority of people with M.E. would be unable to even…

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M.E., long Covid and getting the right support

September 10, 2020

Forward ME has published an open letter addressing concerns and highlighting best practice with regards to rehabilitation of people with long Covid who are experiencing post-viral fatigue.…

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Back to school: information, support and advice

September 07, 2020

School is now back in session, though this often means something very different for young people with M.E. and their parents.We know that, while many will be pleased about schools going…

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Fundraiser of the week: Emily's Yorkshire Three Peaks team

September 04, 2020

Our fundraiser of the week is Emily and her team of Masie, Sacha and Kathryn, who walked, climbed, and scrambled the Yorkshire Three Peaks Challenge together on 25 August in support…

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​Join Astriid's 'Balancing work with M.E./CFS' webinar

September 02, 2020

This summer, we have been in conversation with Astriid, a specialist employment support charity. We are delighted to now be working with them to grow their new Community for M.E./CFS.…

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Save the date: join us online for our 2020 AGM

September 01, 2020

All are welcome to join us online for our 2020 Annual General Meeting on Thursday 15 October.We are currently working on a programme for the 90-minute meeting, which will start at 1.30pm.…

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Fundraiser of the week: our RideLondon participants

August 28, 2020

“My Dad and I chose a lovely sunny morning last week to ride, taking a nice long loop around the canal and we even threw in a hill or two!” – Josh, Action for M.E. Fundraising Officer…

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Vote for Sonya on the Bath Power List 2020

August 27, 2020

Our Chief Executive Sonya Chowdhury has been included in the Bath Power List 2020, with voting now open.Somerset Live, who publish the list, says: “Our annual Bath Power List identifies…

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M.E. petition to Scottish Government now closed

August 26, 2020

The Scottish Government’s Petitions Committee has ended its work on ME Action’s petition, supported by Action for M.E., calling for more investment research, training and education…

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Yahoo! News discusses M.E. and long-haul Covid similarities

August 24, 2020

“Doctors say feeling weak or foggy after normal tasks has become a distinct pattern among patients with long-lasting symptoms. It reminds them of another condition that's also still…

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Fundraiser of the week: Skydiving Janice

August 21, 2020

“M.E. has affected my family for several years… I’ve seen first-hand how M.E. can affect people and more awareness is needed.” Our fundraiser of the week is skydiving Janice, who…

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Social distancing badges available for mobile or print

August 20, 2020

Earlier this month, the UK government published optional badges that people can use to assist with maintaining social distancing from others. The badges can be used to show the carrier…

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Join our free online self-advocacy workshops

August 19, 2020

Following the success of our free online self-advocacy workshop in July, we’re pleased to announce that we will repeat the workshop in September and October.Led by our experienced Advocacy…

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Fundraiser of the week: raffle ticket-selling Catherine

August 14, 2020

Our fundraiser of the week is Catherine, thanks to her impressive raffle ticket-selling exploits. Catherine, whose husband has M.E., raised an incredible £320 selling raffle tickets…

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Sign our letter calling to halt the disability tax

August 13, 2020

Action for M.E. Chief Executive Sonya Chowdhury has written an open letter to the Chancellor, Rishi Sunak, opposing plans for a new tax for online shopping.A new tax like this will…

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Join Josh in taking on the Free Cycle challenge

August 12, 2020

Action for M.E.’s Josh is taking on the RideLondon Free Cycle challenge in support of his brother, who has M.E. We’re just a few days away from the 2020 My Prudential RideLondon,…

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Significant M.E. research proposal in the Netherlands

August 11, 2020

The Dutch national health research agency ZonMw is developing a proposal to spend £23m exclusively on biomedical M.E./CFS research over the next 10 years. The proposal began back…

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Severe M.E. Day 2020: Rose's Diary

August 08, 2020

“I have had severe M.E for 21 years and been housebound for that period. I do not know how I have survived, but I have. The challenge is beyond the disabling symptoms. The circumstances…

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Severe M.E. Day 2020: 'Dialogues for ME/CFS' video

August 08, 2020

“The pain levels were intense. The pain and paralysis were moving up his body, through his torso, into his neck and into his head. For him it was a very frightening experience and for…

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See our survey feedback from people with severe M.E.

August 06, 2020

Our Big Survey that we carried out last year gave us the chance to hear from over 4,000 people with M.E. This included hearing from children and adults with severe M.E.Feedback from…

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PhD student Josh publishes genetics and M.E. review

August 04, 2020

One of the two biomedical PhD students we are funding has published a paper looking at genetics and M.E. Action for M.E.-funded PhD student Joshua Dibble, M.E. patient Simon McGrath…

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Fundraiser of the week: Alex's virtual Great North Run

July 31, 2020

Our fundraiser of the week is Alex, who’s not letting cancelled events get in the way of his fundraising efforts. Having had his plans to take on the Great North Run scuppered by last…

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Support Action for M.E. in online charity poll

July 31, 2020

How would you like to save money on your online purchases while helping to raise money for Action for M.E.? We’re taking part in the My Favourite Voucher Codes charity poll for August.…

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M.E. book wins big at The People's Book Prize

July 28, 2020

Enormous congratulations to Jessica Taylor-Bearman for her recent success in winning the People’s Book Prize for non-fiction for her book ‘A Girl Behind Dark Glasses.’ ‘A Girl Behind…

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Prudential RideLondon launch August fundraiser

July 27, 2020

What has wheels but no engine, and a big smile? A My Prudential RideLondon fundraiser for Action for M.E.! Following the cancellation of annual London cycling festival, Prudential…

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Fundraiser of the week: live streaming Tim

July 24, 2020

Today’s fundraiser of the week is Tim, who marked his 33rd birthday with a gaming fundraiser for Action for M.E. Tim organised a live stream on Twitch of ‘Sonic Boom: Rise of Lyric’…

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Minutes of Forward ME, Friday 10 July

July 21, 2020

The minutes of the latest meeting of Forward ME is now available. At the meeting the charities discussed the DecodeME and Priority Setting Partnership (PSP) research projects, along…

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Fundraiser of the week: Zara and her Jurassic hike

July 17, 2020

A huge thank you to this week’s fundraiser of the week Zara, who’s taking on the mammoth Jurassic Coast Challenge 2020, trekking from Poole Harbour to Weymouth to raise money for Action…

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See Scope's open letter to the PM

July 16, 2020

UK disabilities charity Scope have written an open letter to the Prime Minister, calling on him not to forget disability equality in the Government's recovery plan, through the pandemic…

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Fundraiser of the week: all the Walk with M.E. teams!

July 10, 2020

With contributions now finalised after amazingly continuing to come in past the May 12 end date, our fundraisers of the week this week are all the teams who contributed to this year’s…

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New research paper: home healthcare for severe M.E.

July 06, 2020

A research paper from the team at the UK M.E./CFS Biobank, who have visited nearly 100 people bed- or house-bound with M.E., offers their reflections on healthcare for those severely…

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Fundraiser of the week: runner Melanie

July 03, 2020

Not one run, not two, but 40 - that's the number of runs our fundraiser of the week, Melanie Alflatt, is aiming to complete for the #GNRSoloChallengeMelanie is fundraising for her husband,…

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CEO Sonya Chowdhury on the potential rise of M.E./CFS

July 02, 2020

Our CEO Sonya Chowdhury spoke on BBC Points West today about the potential rise in M.E./CFS following Coronavirus, and the number of people who are experiencing problematic or delayed…

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Action for M.E. update: extending our support service

June 30, 2020

In April, we launched our new Crisis, Advocacy and Support Service for people with M.E. of all ages, supporting you to make informed decisions, secure essential practical local assistance,…

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Fundraiser of the week: cream teas by Clare

June 26, 2020

What a week it's been, with the amazing launch of DecodeME, the M.E./CFS DNA study that aims to help us understand the disease and ultimately find treatments.As we co-lead this research,…

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"We can make DecodeME a success by working together."

June 25, 2020

Sonya Chowdhury, our Chief Executive, reflects on the years of dedication and collaboration by so many, that have led to this week's launch of

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DecodeME gets £3.2m funding for ME/CFS DNA study

June 22, 2020

Patients, scientists and advocates are celebrating £3.2m funding for DecodeME, the largest ever ME/CFS DNA study, announced today.As part of the ME/CFS Biomedical Partnership, Action…

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Fundraiser of the week: 10-year-old Sonny

June 19, 2020

Sonny is 10 years old, and is cycling 100 miles this month to raise money for Action for M.E."I have chosen to raise money for Action for M.E. because my Mummy has had M.E. for 26 years,…

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EU parliament calls for more M.E. research

June 18, 2020

The European Parliament has passed a motion with an overwhelming majority calling for more funds to research M.E.In a resolution adopted yesterday, with 676 votes in favour, four against…

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Free online self-advocacy workshop, Wed 15 July

June 18, 2020

Do you live in Bath and North East Somerset? Do you have M.E./CFS, or care for someone who does? Would you like to improve your self-advocacy skills to ensure your voice is heard and…

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Action for M.E. CEO featured as a Lockdown Legend

June 12, 2020

Action for M.E. CEO Sonya Chowdhury has been featured by JustGiving as one of their Lockdown Legends due to her fundraising efforts with Curry for M.E.Within 24 hours of offering curry…

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Carer’s plea to Make Caring Visible

June 11, 2020

Action for M.E. is paying tribute to the men, women and children who play a vital role in caring for a loved one.People like Clare Jewkes who juggles her full-time job in the NHS with…

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Help shape the future research priorities for M.E./CFS

June 11, 2020

There is a fantastic opportunity for people to join a steering group to support an exciting project which will put people with M.E. at the forefront of future research into the debilitating…

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Supporting our carers during Carers’ Week 2020

June 08, 2020

Action for M.E. is celebrating Carers’ Week 2020 (June 8-14) and paying tribute to the men, women and children who look after a loved one who is living with M.E.If you give assistance…

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APPG on ME - Next meeting on Tuesday 16th June 2020

June 08, 2020

The APPG on ME will be resuming work on their report at a virtual meeting on Tuesday 16th JuneThis meeting will cover issues relating to children and adolescents with ME/CFS - including…

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Fundraiser of the Week: 8 year olds Ruth and Alice

June 05, 2020

We want to say an enormous thank you to Ruth and Alice, both aged 8, who are this week’s fundraisers of the week and raised an incredible £1,161 between them. The walk saw them take…

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Join us for a Cream Tea for M.E.

June 04, 2020

Whether you’re jam first, or cream first, we would love you to get involved in Cream Tea for M.E.With Friday 26 June being National Cream Tea Day, we are asking our supporters to create…

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UPDATE on the campaign to #IncreaseDisabilityBenefits

June 03, 2020

Action for M.E. is calling for action to stop thousands of disabled people from missing out on an emergency out of work benefit top-up to help them through the Covid-19 crisis because…

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Even though May is over, forget M.E. not

June 02, 2020

Anyone who has M.E. will know the illness isn’t just there for an awareness month, week or day, and we support people with M.E. to get their stories out there throughout the year.We…

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Huge thank you to our amazing volunteers and Trustees

June 01, 2020

From writing articles for InterAction to raising money through fundraising events, our fabulous volunteers are crucial in helping us to support thousands of people living with M.E.This…

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M.E. Awareness Month: sharing stories with millions

May 29, 2020

To everyone who took the time and energy to share their story with us this M.E. Awareness Month, allowing us to bring it to a wider audience on our social media channels, in newspapers,…

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Making caring visible: sharing carer stories

May 28, 2020

We know from our Big Survey last year that most carers of people with M.E. are family members or close friends. A recent survey by Carers UK found that 70% of unpaid carers are providing…

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Local M.E. support groups: holding meetings online

May 26, 2020

Has your local M.E. support group been trying to move meetings online?Simon, who appears in our latest short film about living with M.E. and lockdown, has shared some information and…

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New training module for healthcare professionals

May 22, 2020

A new training course has been produced for health professionals by Dr Nina Muirhead and the Medical Education Working Group. The working group was formed from members of the UK CFS…

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Fundraiser of the week: Nat and her amazing new do

May 22, 2020

This week, we say a huge thank you to Nat who took on her own 2.6 Challenge to raise money for Action for M.E.Despite having no hairdressing experience and going at this challenge alone,…

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Avril: learning self management from people with M.E.

May 21, 2020

Avril, our Project Officer in Scotland, shares her thoughts on self-management in a new blog for Health and Social Care Alliance Scotland. She says:"Normally I work on the Mentor M.E.…

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Action for M.E. on the Spoonie Village podcast

May 19, 2020

Action for M.E. is delighted to feature in one of the latest podcasts from Spoonie Village.Clare Ogden, our Head of Communications and Engagement, shot the breeze with Hayley and Tom…

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CEO comment on early intervention study for CFS

May 18, 2020

A paper has been published, reporting on an unsuccessful feasibility study of early intervention to prevent CFS in adults.It concludes: "A randomised controlled trial to test an early…

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Experts by experience: Daisy, Naomi and Simon

May 18, 2020

Living with M.E. can often force people to become experts at self-care, careful planning, energy-management, learning to say no, living with uncertainty, coping with isolation… the…

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Sue's M.E. story: "It was like losing my identity"

May 13, 2020

Sue Hardy was working as a nurse when she began struggling with her health. After gallbladder surgery that she believes "was the final nail in the coffin." Sue was diagnosed with M.E."There…

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Celebrating steps this M.E. Awareness Day

May 12, 2020

Today, M.E. Awareness Day, marks the end of this year’s Walk with M.E. challenge. We want to say an enormous thank you to all our Walk with M.E. fundraisers for raising awareness, walking…

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11 to 17 May is M.E. Awareness Week

May 11, 2020

This week is M.E. Awareness Week.We are sharing stories of people with M.E. each day, like this one from a supporter in the North West:“This is a serious and long-term illness that…

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Countess of Mar retires: share your message of thanks

May 04, 2020

Action for M.E. would like to extend our sincere and grateful thanks to the Countess of Mar, who has announced her retirement from the House of Lords following almost 45 years of service.Margaret,…

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Fundraisers of the week: our eggsellent 2.6 Challenges

May 01, 2020

This week, we have three amazing fundraisers of the week: our 2.6 Challengers.Like so many charities, we rely on our brilliant supporters taking part in fundraising events to support…

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Highlighting M.E. in two parliamentary inquiries

April 30, 2020

Action for M.E. has responded to two important House of Commons inquiries focusing on the impact Covid-19 and the lockdown has had on people with M.E.Over the past few months we have…

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This M.E. Awareness Month, your story matters

April 30, 2020

M.E. Awareness Month is almost upon us, with M.E. Awareness Day on Tuesday 12 May - and it's going to be an M.E. Awareness Month quite unlike any other.While the world has changed in…

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Curry with M.E. total so far: an amazing £10,585

April 28, 2020

We would like to say a huge thank you to everyone who has supported our CEO Sonya Chowdhury's 2.6 Challenge.Her take on this UK-wide campaign is Curry for M.E., walking 2.6 miles to…

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Sonya's 2.6 Challenge: Curry for M.E.

April 23, 2020

Like so many other charities, Action for M.E. relies on our brilliant fundraisers taking part in fundraising events to support our vital work.The cancellation of these events due to…

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Tell UK Gov your experience of COVID-19 support

April 16, 2020

Can you share your experience to help the UK Government understand the impact of the lockdown and Coronavirus situation on people with M.E. and other long-term conditions?We are asking…

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Join the Priority Setting Partnership Steering Group

April 15, 2020

An exciting opportunity has opened up for people to join the steering group for the new Priority Setting Partnership (PSP) which is being run by Action for M.E. and the James Lind Alliance.This…

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UPDATE Priority shopping: "extremely vulnerable" list

April 09, 2020

Following the steps taken by Action for M.E. and other UK charities over the last few weeks, representatives from various supermarkets have responded detailing the steps they are taking…

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Priority shopping campaign UPDATE

April 03, 2020

On Friday 27 March, we wrote a letter to the UK Government and major supermarket chains, signed by members of Forward-ME and the All Party Parliamentary Group for M.E. We highlighted…

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Fundraiser of the week: birthday girl Jo

March 27, 2020

Jo Bradley who was diagnosed with M.E. in 2014 while working as a Retail Manager. She told us:“I wanted to raise money for Action for M.E. because of the support you’ve provided me…

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Action on urgent need for priority shopping

March 27, 2020

Action for M.E. has joined with other others to highlight the immediate challenge faced by people with M.E. in accessing food and essential supplies, and ask for immediate action.Signed…

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Coronavirus Bill and Care Act concerns: tell your MP

March 23, 2020

Yesterday, Disability Rights UK shared its serious concerns about the implications of the Coronavirus Bill on human rights, particularly for disabled people and those with long-term…

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Fundraiser of the week: The Thunderbolt

March 20, 2020

This week’s fundraiser of the week is the team at the Thunderbolt pub in Totterdown, Bristol.Dave, landlord of the Thunderbolt, very charitably hosted an Action for M.E. fundraiser…

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APPG on M.E. update: biomedical research meeting

March 17, 2020

The All-Party Parliamentary Group (APPG) on M.E. held its first meeting on Tuesday 3 March, where biomedical research was discussed.Twenty MPs attended or sent staff to hear about the…

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Fundraiser of the week: Our Bath Half Team

March 13, 2020

This week’s fundraisers of the week are our brilliant Bath Half team who will be taking on 13.1 miles this Sunday! A huge thank you to Tom, Katie, Sophie and Ed who have so far raised…

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2020 CMRC conference videos now available

March 12, 2020

On Tuesday 10 and Wednesday 11 March the UK CFS and M.E. Research Collaborative (CMRC) held its annual conference in Bristol. Despite several international speakers being unable to…

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Exciting new project to set M.E. research priorities

March 10, 2020

A new project, supported by three Government-backed research funders, has been launched to help ensure that the M.E. research priorities that matter most to the people affected by the…

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Research conference this week: follow online

March 09, 2020

The sixth annual UK CFS/M.E. Research Collaborative (CMRC) conference will take place in Bristol tomorrow and Wednesday 11 March. Due to concerns over Coronavirus (COVID-19), a number…

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Fundraiser of the week: Marathon-running Tanya

March 06, 2020

This week’s fundraiser of the week is Tanya Jackson. Tanya’s daughter, Danielle, was diagnosed with severe M.E. 20 years ago at the age of 7, while Tanya experienced Chronic Fatigue…

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Update on Coronavirus and M.E.

March 04, 2020

The UK Chief Medical Officers have raised the Coronavirus (COVID-19) risk to the public from low to moderate. We appreciate that this may be especially worrying for those already…

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Roger Siddle appointed Chair of Board of Trustees

March 02, 2020

Action for M.E. is delighted to announce the appointment of Roger Siddle as our new Chair of Board of Trustees. Roger says: “Like many others, I have been struck and frustrated by…

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Fundraiser of the week: Hazel Wilcox and team

February 28, 2020

This week’s fundraisers of the week are Hazel Wilcox and her team. Hazel, whose sister has M.E., is taking part in Walk with M.E. with her team in order to support Action for M.E. and…

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Fundraiser of the week: Belinda and her handmade cards

February 21, 2020

Our fundraiser of the week is Belinda, who is donating money from sales of her handmade greeting cards.Belinda was diagnosed with M.E. and Fibromyalgia four years ago. She says:"In…

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Will your MP attend the APPG for M.E. in March?

February 20, 2020

The next meeting of the All Party Parliamentary Group for M.E. is taking place on Tuesday 3 March where the focus will be on biomedical research. You can still invite your MP to…

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Free research workshop in Bristol: all welcome

February 20, 2020

What big research questions do people with M.E., their carers and clinicians want answered?You are invited to a free workshop on Tuesday 10 March to start a conversation about addressing…

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Updated resource: pacing for people with M.E.

February 18, 2020

Fully revised for 2020, our comprehensive pacing guide is based on the insight and experience of people with M.E.Pacing is a an approach that can help people with M.E. take control…

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Scottish Health Council survey of M.E. in Scotland

February 14, 2020

The Scottish Health Council (SHC) has launched a survey to gather the views and lived experience of people with M.E./CFS in Scotland. The survey was commissioned in response to questions…

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Fundraiser of the week: beer can man Nick West

February 14, 2020

We’re saying a hearty cheers and thank “brew” very much to today’s fundraiser of the week, beer can fan Nick West.Last year, Nick made it into the news when he donated part of his…

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Meet M.E. drop-in in Fife on 12 March: all welcome

February 12, 2020

We asked Zara, who attended one of our Meet M.E. drop-in events, what she loved about the session. She said:"Meeting other people with M.E... Knowing that people are interested in supporting…

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International #WomenInScience Day: CMRC speakers

February 11, 2020

“It’s shocking that so many people are living with this debilitating illness and there is so little attention on it," says Dr Sadie Whittaker. "I feel strongly that increasing recognition…

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Fundraiser of the week: Sarah and her team mates

February 07, 2020

"Together as a team we hope to raise awareness and funds for Action for M.E. so that they can make a difference to the lives of those with this invisible and greatly misunderstood…

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Neurological care and support in Scotland update

February 03, 2020

Last month the Scottish Government launched the Neurological care and support: Framework for action 2020-2025. This framework sets out their vision for driving improvement in the care…

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