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March 15, 2022
Despite the devastating impact of M.E., understanding of the disease is still woeful. While at least 250,000 people live with M.E., and even more experiencing overlapping symptoms with…
December 16, 2021
Over 2,000 people with M.E./CFS, carers and health professionals in the UK engaged with the recent survey from the M.E./CFS Priority Setting Partnership. Through three stages of participation,…
December 09, 2021
The M.E./CFS Priority Setting Partnership (PSP) is giving you the opportunity to define your top ten priorities for future M.E./CFS research.Over 1,700 people have now voted for their…
November 23, 2021
Over 1,000 people have now voted for their M.E./CFS research priorities. People with M.E./CFS, carers and clinicians are all asked to take part. The M.E./CFS Priority Setting Partnership…
October 25, 2021
The ME/CFS Priority Setting Partnership (PSP) is giving you the opportunity to define your top ten priorities for future ME/CFS research. In partnership with the James Lind Alliance,…
September 07, 2021
For the past month, our Board of Trustees have been exploring a potential merger with UK charity The ME Trust, with a view to making a decision in mid-September. To inform this process…
August 25, 2021
In the three weeks since our press briefing to journalists, we’ve received an unprecedented amount of coverage from all kinds of news outlets. Our intention from the briefing was to…
July 09, 2021
With Covid-19 restrictions lifting later this month, our medical advisor Dr. David Strain warns about the long-term threat Long Covid poses to young people - drawing comparations with…
May 04, 2021
WEDNESDAY 12 MAY UPDATE Response from NICE now added, please see belowOur Chief Executive, Sonya Chowdhury, has written to the National Institute of Health and Care Excellent (NICE)…
April 15, 2021
London Marathon Events have teamed up with the Captain Tom Foundation to host the Captain Tom 100, a sponsored event to celebrate Captain Tom’s life and raise vital funds for charities…
April 07, 2021
On Thursday 15 April, from 6.00-6.45pm, the DecodeME Management Group will be hosting a live Q+A webinar on the DecodeME Facebook page. The webinar will focus primarily on the recruitment…
March 30, 2021
The National Institute for Health and Care Excellence (NICE) emailed stakeholders yesterday to let us know there will be a delay in the publication of its new guideline for diagnosing…
March 29, 2021
Many areas across the United Kingdom have now entered a time of political purdah – the name given to the time between when an election campaign officially starts and when the vote is…
March 26, 2021
The ever supportive and creative Danny Redhead is back with his latest fundraising idea - the #LastPhotoChallenge. Danny (pictured centre), who we’ve featured a number of times due…
March 23, 2021
While lockdown may be ending soon for many across the country, thousands of people with M.E. have been in lockdown for decades and will continue to live a life in lockdown even when…
March 01, 2021
Action for M.E. has joined 50 international partner organisations to form the Long COVID Alliance, an organisation with aims to educate policy makers and accelerate research to transform…
February 25, 2021
More than 1,000 people have so far completed a survey which researchers from the University of Cardiff hope will help better inform healthcare workers about the needs of families and…
February 24, 2021
This morning, our Services and Communications Team Leader, Clare Ogden, appeared in place of CEO Sonya Chowdhury on the Neil Green show on BBC Radio Tees to discuss M.E. and the lack…
February 23, 2021
Last week, the All-Party Parliamentary Group on Coronavirus called for Long Covid to be recognised as an occupational disease for frontline health and care workers."The long-term consequences…
February 18, 2021
“Imagine feeling viral, exhausted, unwell and in pain, confined to your bed or house, lying in a dark room for years or even decades. The world has been shocked by the damage that viruses…
February 15, 2021
“Sonya Chowdhury, the chief executive of Action for ME, said she was shocked that the condition (M.E./CFS) had been left out of category 6… Even mild viruses can cause flare-ups and…
February 11, 2021
Following the success of our recent advocacy workshops for people in Bath and North East Somerset, we’re pleased to announce that we will repeat the workshop for people across the UK…
February 05, 2021
“It means a great deal to myself, to Laura (Joe’s partner who has M.E.) and to the thousands of people who deal with this illness every day.” – Joe, who took part in the 2020 virtual…
February 03, 2021
The Disability Benefits Consortium (DBC), a group made up of over 100 charities including the MS Society, Parkinson’s UK, and ourselves, has published a report on how the pandemic has…
January 29, 2021
Following the success of our free online self-advocacy workshops in 2020, we’re pleased to announce that we will host more in February and March.Led by our experienced Advocacy Officers,…
January 18, 2021
This year’s Bath Half Marathon is taking place on Sunday 5 September, with half the number of participants to adhere to social distancing measures. We're calling for people to run…
January 15, 2021
A Long Covid debate was held yesterday in the House of Commons during which MPs highlighted M.E. and called for lessons to be learned from the illness when treating Long Covid patients.…
December 18, 2020
NICE has published its COVID-19 rapid guideline: managing the long-term effects of COVID-19. Developed jointly by NICE, the Scottish Intercollegiate Guidelines Network and the Royal…
December 17, 2020
On Wed 16 Dec, as members of the Regional Stakeholder Network for Disability, Action for M.E. attended a roundtable discussion with Justin Tomlinson MP, Minister of State for Disabled…
December 10, 2020
The Forward-ME group has called for a health warning to put added to the existing NICE guideline for M.E. to limit potential damage through graded exercise therapy (GET). This comes…
December 08, 2020
We are pleased to announce that Action for M.E. has been named Best Patient Support Charity at the 2020 SME Southern Enterprise Awards.The annual Southern Enterprise Awards recognise…
December 01, 2020
The Big Give Christmas Challenge 2020 is officially underway!Throughout our Big Give Christmas Challenge, from noon today to noon on Tuesday 8 December, all donations to us via the…
November 27, 2020
“I’m Alex, I’m 11 years old, and I’ve had M.E. for 2 and a half years. I’m mainly housebound/bedbound, a lot of people don’t understand M.E. and how one day you can look “healthy” and…
November 23, 2020
For up-to-date information on the vaccine, including a template letter highlighting that M.E. is an underlying neurological condition that should be in priority group 6, please visit…
November 20, 2020
“It absolutely made my birthday, knowing that this would in turn help lots of other people, especially in such a difficult year.” Our fundraiser of the week is Lizzy, whose birthday…
November 19, 2020
Our CEO Sonya Chowdhury appeared on BBC Radio Bristol’s mid-morning show with John Darvall on Thursday 19 Nov. On the show, Sonya discussed the draft NICE guideline for M.E. that was…
November 10, 2020
The National Institute for Health and Care Excellence (NICE) has published its draft guidance on the diagnosis, treatment and management of M.E./CFS. Updated guidance has been long-awaited…
November 06, 2020
“Their response has been overwhelming, with challenges including a 50-minute family disco dance, 50km walks and Hiking along the Yangtze River!” Emma and her team, who are undertaking…
November 05, 2020
A second All-Party Parliamentary Group (APPG) meeting for M.E. in as many months is taking place in November. Following October’s APPG on welfare benefits, this meeting will focus on…
November 02, 2020
Following Saturday’s announcement that England is set to go into a second lockdown from Thurs 5 November until Wed 2 December, it’s understandable that you may have a range of concerns…
October 26, 2020
Funded by BBC Children in Need, our Breaking Isolation project is being co-designed and delivered by young people with M.E. The three-year project will see our steering group come…
October 19, 2020
To raise awareness of M.E. and the burden it places on the lives of over 250,000 people in the UK, Action for M.E. will be taking part in the Virtual Disabilities Awareness Day event…
October 12, 2020
Professor Stephen Holgate has been knighted for services to medical research in the 2020 Queen’s Birthday Honours List. Stephen, who works as ‘Medical Research Council Clinical Professor…
October 09, 2020
On a miserably rainy Sunday last weekend, not only did Joe, Steve, David, Jeanette, Phil and Sophie decide to head outside, they took part in the Virgin Money London Marathon: The 40th…
October 09, 2020
The first meeting of the newly formed M.E./CFS Priority Setting Partnership (PSP) Steering Group is taking place later today. The project, supported by three Government-backed research…
October 02, 2020
Our fundraiser of the week is Danny, who has collaborated with his local GP surgery to raise funds for Action for M.E. Through Recycle4Charity scheme, Danny has set up ink cartridge…
October 01, 2020
If you’re unsure about what events this year have meant for getting your flu vaccine this winter, consider checking out our ‘Winter flu jab’ page on our website setting out information…
September 29, 2020
This National Inclusion Week, we’re pleased to be supporting specialist employment charity Astriid, hosting a second 'ME in the workplace' webinar following the success of their first…
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…
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…
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…
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…
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.…
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…
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…
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…
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…
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…
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,…
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…
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…
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…
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…
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.…
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…
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’…
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…
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…
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…
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…
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,…
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…
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,…
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,…
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
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…
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,…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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,…
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…
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…
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…
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,…
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.…
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…
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…
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…
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…
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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