Action for M.E. in the news

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…


Dr David Strain on M.E. & long term impact of Long Covid

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…


Letter to Sunday Times: Harmful Long Covid article

June 16, 2021

We were disappointed to read the unsubstantiated and harmful opinions of psychiatrist Jeremy Devine in The Sunday Times on 13/06/2021. We’re glad other experts disagreed with his views…


NICE guideline delayed until August 2021

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…


National Day of Reflection

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…


Today is Young Carers Action Day

March 16, 2021

This annual event, organised by Carers Trust, has taken place over the past six years to raise awareness of young carers and the contribution they make to their families and local communities.…


Herald article warns of M.E. risks

March 09, 2021

An article in the Herald Scotland has warned of the risk of a ‘tidal wave of post-pandemic M.E’. The piece highlights how previous mistakes made with M.E. are now being repeated…


​Action for M.E. comment on Government Budget

March 03, 2021

Today, the Chancellor will be unveiling his Spring Budget, with the UK Government set to announce a 6-month extension to the £20 uplift to Universal Credit.  This is welcome news. However,…


Clare talks M.E. on BBC Radio Tees

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…


Sonya interviewed on BBC Radio Tees

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…


Guardian article on Covid priority groups

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…


Guardian column on M.E. and Long Covid

January 22, 2021

“If one good thing emerges from this pandemic, it could be more recognition and funding for people with ME/CFS.” Columnist George Monbiot wrote a piece in the Guardian yesterday about…


Watch 'Demystifying ME/CFS' webinar

January 19, 2021

Last week, on Thursday 14 January, Dr Charles Shepherd from the ME Association, Dr Nina Muirhead, and Caroline Kingdon from the UK ME/CFS Biobank each gave presentations at the ‘Demystifying…


Bath Half Marathon 2021

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…


M.E. referenced in House of Commons Long Covid debate

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.…


'This is ME': a short film on Spoon Theory

January 11, 2021

“Back in 2019 when still in a bad flare up of M.E. I made a short film hoping to shed some light on our experiences with invisible illnesses and in particular the way in which our family/friends…


CEO Sonya talks M.E. on BBC Radio Bristol

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…


Key information following lockdown announcement

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…


Push for extension of local welfare assistance

October 29, 2020

Have you benefitted from support from local councils to help those struggling financially during the pandemic? The Trussell Trust have published a report making the case for extending…


Casey Stoner discusses his M.E. diagnosis and 'Help Cure ME'

October 22, 2020

“As much as it’s great for me to get these warm responses, I hope that other people out there in the world can get some support.” Two time Moto GP world champion Casey Stoner has…


​Join us for #DADvirtual on Sunday 25 October

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…


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…


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…


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…


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…


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…


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…


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…


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…


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…


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…


"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


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…


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…


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…


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…


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…


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,…


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…


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…


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…


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…


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,…


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…


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…


General election: next steps

December 13, 2019

After the results of the general election, you may have some questions about how the result will affect you and your family. As part of our work, we will be looking at the promises…


Parliamentary engagement: taking a stand for M.E.

November 29, 2019

This election we have written to 1,500 General Election candidates asking them to stand up for M.E. if they are elected.In our letters, we have shared information about the condition…


Calling all knitters – gift an angel this Christmas

September 02, 2019

You may have heard of our annual project “Christmas Angels” which supports people with M.E. to share Christmas cards with each other via our office. Some are very isolated, so these…


Involving young people in the NICE guideline development

August 13, 2019

We are pleased to announce that Action for M.E. will be working with Oxford Brookes University to gather the experiences of children and young people with M.E. to develop a new guideline…


"Great misery has been inflicted" says UN reporter

May 23, 2019

“Great misery has been inflicted unnecessarily, especially on the working poor, on single mothers struggling against mighty odds, on people with disabilities who are already marginalized,”…



May 22, 2019

M.E. is a largely misunderstood and unrecognised illness, not only nationally but also globally. As a result, it is easy to see how isolation and ignorance become common themes experienced…


Are you missing M.E.? - Naomi's story

May 10, 2019

Hi, my name is Naomi and I have a condition called M.E. Before I became ill, I was at university studying nursing. Then I started to experience more symptoms and would get frustrated…


A day in the life of Ev

May 09, 2019

As part of our M.E. awareness month campaign, Action for M.E. handed over our social media pages to Ev - a person with M.E. She spent the day posting about her condition, experiences…


Are you missing M.E.? - Martin's story

May 01, 2019

I was diagnosed in April 2018 after forcing my GP to correctly diagnose me. However I believe I have had M.E since I was 18/19 years old. Over the last three years it has become severe…


May is M.E. Awareness Month

May 01, 2019

For M.E. Awareness Month 2019, we are asking professionals, planners and policy-makers: "Are you missing M.E.?"Many children and adults with M.E. tell us they feel missed out, and left…


Our staff Walk with M.E. team – in honour of the SAMS

April 23, 2019

As part of Walk with M.E. 2019, ten members of Action for M.E.’s staff are taking part. In preparation for the campaign, we all had many ideas about how we would make our team special.Our…


M.E. in Sunday Times: "I've been made to feel a burden"

March 24, 2019

Responding to the hundreds of comments it received following Rod Liddle's comment piece on M.E. last weekend, the Sunday Times has published an article highlighting the reality of M.E.…


#ShareGoodScience in response to The Sunday Times

March 18, 2019

A number of you have contacted us about the awful story by Rod Liddle in yesterday’s Sunday Times. Given the stiff competition to get a response published in the paper itself, we have…


Fundraiser of the week - Nick West

March 15, 2019

Our fundraiser of the week has quite a unique story. Nick West has been a collector for over 42 years and has amassed a collection of over 9300 different British beer cans. His hobby…


Patients and researchers moving M.E. research forward

March 14, 2019

Yesterday, you may have seen a story published by an international news agency about some M.E. researchers facing online abuse and harassment. We cannot condone any behaviour that…


M.E. inspiration on International Women's Day

March 08, 2019

International Women’s Day celebrates women all over the world and the amazing work they have done. Whether they are politicians, doctors, campaigners, carers, friends, or family members,…


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…


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…


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…


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…


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…


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,…


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…


"I was desperate to talk to someone who understood"

April 17, 2018

"When my son Lewis, now 11, caught a bug he seemed unable to shake off in 2016, his symptoms seemed worryingly familiar. Although I tried to convince myself he would soon be back to…


Unrest screening plus Q&A in Bath on 14 November

November 03, 2017

As charity partner of the award-winning M.E. documentary Unrest, Action for M.E. is delighted to support a community screening in Bath later this month, where our Chief Executive, Sonya…


Double your donation: the Big Give Christmas Challenge

November 01, 2017

The children and adults that Action for M.E. supports rely on services funded by your generous donations. We are absolutely thrilled that, for one week only, those donations will be…


See award-winning M.E. doc Unrest at our events

October 18, 2017

Action for M.E. is thrilled to be partnering with award-winning documentary Unrest to raise awareness and understanding of M.E. and its impact. Working with the team behind the film,…


SMILE Trial results published: Action for M.E. comment

September 20, 2017

Results of a trial published today show that a small cohort of young people with mild or moderate M.E. report improvement in their symptoms after undergoing the Lightning Process in…


M.E. in Northern Ireland: our NVTV interview

August 17, 2017

Less than half of UK NHS boards commission a specialist service for M.E., and Northern Ireland has no provision at all, leaving thousands of desperately ill people unable to access…


Sonya Chowdhury responds to ‘psychosomatic’ comment

October 10, 2016

Action for M.E. Chief Executive Sonya Chowdhury has challenged a comment posted on the British Medical Journal (BMJ) website which suggested that for M.E. patients, the condition is…


M.E. in the media: new challenges for Jude and Beth

September 20, 2016

In the news this month are two women with M.E. celebrating their achievements. Jude Adams, who has lived with M.E. for seven years, has released her first album, supported by Arts Council…


Millions missing: add your voice to the campaign

September 07, 2016

A global M.E.-awareness event is planned for Tuesday 27 September, and you can get involved. Building on the success of protests that took place across the world in May and June, the Millions…


Ministers answer parliamentary questions on M.E.

June 14, 2016

This week, two written parliamentary questions have been answered on M.E. The first was tabled by Alex Cunningham MP, and arose as a result of Mr Cunningham attending the recent APPG…


Taking care of carers: Carers Week 2016

June 06, 2016

“My husband’s life has had to change as drastically as my own in order to accommodate my condition, and over the years he has often had to act as my carer. Our life as a couple has…


M.E. in the media: the double whammy of isolation

June 02, 2016

“I only see one or two people for an hour or two at most – I can't cope with any more than that,” says Tisha Bratt, who has had M.E. for 22 years. “My husband is wonderful. We met after…


M.E. in the media: raising awareness, reducing isolation

May 16, 2016

We’re just over half way through M.E. Awareness Month 2016, and are delighted that so many local and regional newspapers are helping to spread our message: don’t ignore M.E.Our media…


M.E. in the media: M.E. Awareness Month so far

May 10, 2016

Already this M.E. Awareness Month our media case studies have appeared in the local press and on newspaper websites across the UK. This year our media work is focusing on the isolation…