June 10, 2024
We are currently working on our organisational response to the Government's health and disability Green Paper, 'Modernising support for independent living', to ensure that the voices…
May 30, 2024
We’re delighted to formally announce our two newest Patrons, Sarah Dorin and Philip Mould OBE.Both Sarah and Philip have experienced the devastating effects that ME can have on people’s…
May 30, 2024
In response to increasing requests for advocacy support from people with ME/CFS in hospital, including those more severely affected, 25% M.E. Group, Action for M.E., Blue Ribbon for…
May 28, 2024
The UK Clinical Research Collaborative (UKCRC) Research Working Group on ME/CFS has launched its 'Researcher Toolkit'.Government funders of research in ME, academic researchers, and…
May 23, 2024
We are aware the general election causes concern for many people within the ME community in relation to the progress of the Delivery Plan.We have been assured on numerous occasions…
May 22, 2024
Our latest Learn about ME explores a much more preferable person-centred approach, sharing insight and experience from Katie Davies, Occupational Therapy Team Lead in NHS Grampian;…
May 22, 2024
Britain’s human rights watchdog is formally investigating the Department for Work and Pensions (DWP) over its treatment of chronically ill and disabled people. The inquiry will focus…
May 21, 2024
The All-Party Parliamentary Group on ME (APPG) has launched its inquiry into Severe ME.Action for M.E., the ME Association, and the 25% M.E. Group will be working closely to support…
May 17, 2024
Yesterday, our Chief Executive, Sonya Chowdhury, met with the Minister for Disabled People, Health and Work, Mims Davies MP, to discuss the recently announced consultation on PIP reform…
May 17, 2024
This #FundraisingFriday we are celebrating our amazing team of runners who ran the TSC London Marathon last month.Together, they have raised an astonishing £34,819 to support our work!We…
May 16, 2024
Essays on ME/CFS by medical students at universities in Edinburgh, Dundee and St Andrews have been selected as the winning entries in the 2024 Learn about ME essay competition in Scotland,…
May 14, 2024
In the early hours of World ME Day, Sunday 12 May, Led by Joe Lyons, CEO of West Ham United Foundation, three teams reached the summit of Snowdon, completing their staggering challenge,…
May 13, 2024
PrecisionLife and Metrodora Institute have launched new clinical trials, in the United States (US), to accelerate the diagnosis and treatment of ME/CFS and Long Covid patients.Up to…
May 10, 2024
Lee McGill (Department of Health & Social Care) joined the Research Working Group today to share an update on the Delivery Plan. We were pleased to hear there has been considerable…
May 10, 2024
Ahead of World ME Day 2024, Sir Sajid Javid MP has written an article in The Times, stating: "People with ME have been ignored for far too long."Sir Sajid also goes on to say: "Since…
May 08, 2024
This Sunday 12 May, on World ME Day, the Hertfordshire, Support Group will be hosting a day of free activities at St Albans Museum + Gallery including live music, poetry readings, and…
May 03, 2024
This World ME Day, we are supporting the World ME Alliance in becoming a #GlobalVoiceForME.ME is a global health crisis and we must therefore collaborate across the world to combat…
May 01, 2024
Video Update from our CEOFollowing the Westminster Hall debate held on Wednesday 1 May 2024, ahead of World ME Day, our Chief Executive, Sonya Chowdhury provided the following video…
May 01, 2024
Join champion fundraiser Anna Redshaw and Action for M.E. on Sunday 19 May to celebrate the Blue Sunday Tea Party for M.E. 2024! Enjoy a day of tea and cake, whilst connecting with…
April 30, 2024
The Department for Work and Pensions (DWP) has published plans to make the disability benefits system 'fit for the future' in a new Green Paper which explores the reform of the Personal…
April 26, 2024
We are delighted to announce that Sir Sajid Javid MP will be leading a Westminster Hall debate in the Houses of Parliament on Wednesday 1 May, taking place from 16.30 - 17.30.Ahead…
April 25, 2024
We’re delighted that Jacob Wilson, Founder and Master Distiller of The Henley Distillery, has joined Joe and Sav on our Action for M.E. team taking on the National Three Peaks Challenge!Jacob…
April 22, 2024
Action for M.E. is delighted to announce a new partnership with The Henley Distillery, an award winning company distilling gin, rum and other spirits based in Henley-on-Thames, Oxfordshire.We…
April 18, 2024
Action for M.E. is pleased to offer a short, facilitated, online Mindfulness session in April for adults with M.E., intended to complement other self-management tools, as part of our…
April 10, 2024
This week we are celebrating the incredible Brian McNestry, who recently took on the Brighton Marathon!Brian was running for his partner, Charlotte, who has lived with ME for over two…
April 09, 2024
StatementAction for M.E. is again saddened and concerned to see further reports relating to the concerning treatment of Millie and others with severe ME in hospitals and the lack of…
April 04, 2024
Channel 4 News speaks to Jo, a participant of DecodeME, the world's largest genetic study of ME.Jo discusses the devastating impact that ME has had on her's and her family's lives,…
April 04, 2024
In tonight’s segment on ITV Granada, our CEO, Sonya Chowdhury, speaks to Joshua Stokes about the lack of specialist services for ME."We sent out a freedom of information request to…
April 04, 2024
On Saturday 11 May, and finishing on World ME Day, a courageous team of Hammers will be attempting to conquer the National Three Peaks Challenge whilst also attempting to raise a collective…
April 03, 2024
Reporter, Joshua Stokes, speaks to Thomase Cleator, a farmer from the Isle of Man, who has lived with ME since the age of 12.“In a sense, I will always say in stole my childhood.Some…
March 28, 2024
We were delighted to see John McDonnell MP presenting himself as an Action for M.E. Parliamentary Champion in a Westminster Hall debate on Tuesday 26 March.In support of a motion raised…
March 20, 2024
Music artist, Steffan Price, A.K.A. Stavrin, has released a new single ‘Have You Tried Yoga’.The song is now available on Spotify and major streaming services for 99p, with all proceeds…
March 11, 2024
Sonya Chowdhury, CEO of Action for M.E. and Co-chair of the World ME Alliance, and Sian Leary, Head of Advocacy and Communications at the World ME Alliance, have been invited to speak…
March 06, 2024
The Nursing Times describe the “dire” state of ME/CFS services in Scotland, following the death of specialist nurse, Keith Anderson. The article discusses the lack of specialist…
March 05, 2024
Ahead of the upcoming Spring Budget, Labour MP for Hayes and Harlington, John McDonnell, calls on the Chancellor to address the lack of funding for M.E. research and for the Government…
March 01, 2024
It’s #FundraisingFriday! This week we’re celebrating Izzy who is running the Barcelona Marathon on March 10, on behalf of her close friend Sasha, who has M.E. Izzy has already raised…
February 26, 2024
The Sunday Post have released an article discussing the lack of support available to people with M.E. in Scotland.The article tells the story of Stuart Brown, a research scientist who…
February 07, 2024
As we approach World ME Day on May 12th, 2024, Action for M.E. joins the global community in shedding light on the pressing issues surrounding Myalgic Encephalomyelitis (M.E.). This…
February 02, 2024
We're delighted to announce that Jeff Banks has joined Action for M.E.'s Board of Trustees.Speaking on his appointment, Jeff said:“I am honoured to have been appointed a Trustee of…
February 02, 2024
Action for M.E. are delighted to announce that Baroness Scott of Needham Market has joined our Parliamentary Champions network!Baroness Scott will working with our champions, Fleur…
January 30, 2024
Action for M.E. was very concerned to see the quote provided in the Daily Mail attributed to our medical adviser, Professor David Strain. David who has asked us to issue the following…
January 26, 2024
Whilst Action for M.E. welcomes the BBC's decision to remove Dragons' Den episode 3 (series 21) from iPlayer whilst it is under review, we are disappointed by its continued defence…
January 22, 2024
Action for M.E. are aware of the Dragons Den episode which aired on BBC One on 18 January, during which a contestant made unevidenced claims relating to the efficacy of ear seeds and…
December 15, 2023
PrecisionLife Project Awarded Innovate UK Grant to Improve Diagnosis and Treatment of ME/CFS and Long CovidInnovative precision medicine project to diagnose ME/CFS more accurately and…
December 06, 2023
Action for M.E. is today launching a Parliamentary Champions network which will further bolster our advocacy and ensure that the voice of the M.E. community is heard in Parliament.…
November 23, 2023
The tenth episode of our Learn about M.E. podcast series is available to listen to now. We welcome Consultant Respiratory Physician Dr Binita Kane and parent Helen Gibson, who highlight…
November 22, 2023
As a member of the Disability Benefits Consortium, Action for M.E. is calling on the Government to put a stop to their alarming benefits changes which could see many disabled people…
November 09, 2023
On 6 November, the Department of Health and Social Care (DHSC) released an update providing information about work to develop the Final Delivery Plan on ME/CFS.You can find out more…
November 07, 2023
On Monday 3 October, Carol Monaghan MP, who also serves as the Chair of the APPG on ME, visited the team at the DecodeME Study at the University of Edinburgh. The purpose of her visit…
November 06, 2023
Trustees’ Week is a time for us to come together to celebrate the achievements of nearly one million trustees across the UK. The theme for this year is: Many voices. Working Together.…
November 02, 2023
Every year, we challenge children, young people and adults across the UK to get Christmassy and creative. Whether it’s a drawing, painting, collage, photograph or even a cross-stitch,…
November 01, 2023
Action for M.E. pays tribute to the life and work of Keith Anderson, M.E. Nurse Consultant in NHS Fife who offered life-altering support for people with M.E. from the Ladybank Clinic…
October 30, 2023
We are delighted to see the final copy of BACME’s National Services Survey. As a charity, we remain forever grateful for the work of clinicians within the ME/CFS space; a space that…
October 30, 2023
The next meeting of the All-Party Parliamentary Group (APPG) on M.E. will take place on Wednesday 15 November at 1.30pm-4.30pm.The upcoming meeting will be centred around research,…
October 26, 2023
We are delighted to have received funding from The National Lottery Community Fund for a new counselling project for young people with M.E. The project will start in 2024 and will be…
October 16, 2023
In anticipation of the forthcoming UK General Election, expected to be called by the Prime Minister in 2024, we have published a Manifesto on M.E. which presents three key calls to…
October 06, 2023
The Department of Health and Social Care (DHSC) has provided an update on next steps on the Interim Delivery Plan which has now closed for consultation for submissions online. Around…
October 05, 2023
IntroductionMy full reality: the interim delivery plan on ME/CFS was published by the Department of Health and Social Care (DHSC) on 9 August 2023. Consultation on the plan was open…
October 03, 2023
Our Annual General Meeting (AGM) was held on Friday 29 September, chaired by Roger Siddle, Chair of our Board of Trustees.The AGM covered key agenda items, including the presentation…
October 02, 2023
We are thrilled to announce that the first Clare Francis Research fellowship has been awarded to Audrey Ryback.Audrey will be affiliated to the Genetics Centre of Excellence at the…
September 27, 2023
We are deeply saddened to hear that Janice Kent died peacefully in hospital on 18th September after a short illness. Janice and her husband Bill founded reMEmber, which received The…
September 25, 2023
The DecodeME study, which is the world's largest DNA study on M.E., has announced a recruitment closing date of Wednesday, 15 November at 5pm. The team are encouraging those who live…
September 18, 2023
Self Management Week 18 – 21 September 2023 #ISelfManageWe are supporting the Health and Social Care Alliance’s Self Management Week through highlighting resources we offer that people…
August 24, 2023
Today, the initial findings from the DecodeME questionnaire data collected from the first 17K participants have been published on NIHR Open Research. You can find a summary blog of…
August 21, 2023
You are invited to our 2023 Annual General Meeting (AGM), where you can hear from Action for M.E. staff and trustees, ask questions and find out how we’ve worked with and supported…
August 11, 2023
Following the launch of the much-anticipated cross-Government interim delivery plan on ME/CFS earlier this week, the Department of Health and Social Care (DHSC) have been in touch to…
August 09, 2023
Today, we welcome the release of the much-anticipated cross-Government interim delivery plan on ME/CFS which is now open for its consultation phase. The Department of Health and Social…
July 25, 2023
Following our merger with The ME Trust in February 2022, we are now able to offer a variety of Healthcare Services. As part of this, we offer a Chaplaincy service where our team of…
July 18, 2023
APPG on M.E. 10 May 2023 The All-Party Parliamentary Group (APPG) on M.E. took place on Wednesday, May 10, alongside the Annual General Meeting (AGM) of the APPG on M.E. Presentations…
July 10, 2023
Our new podcast episode in our Learn about M.E. series is now available to stream: ‘Learn about M.E. and GP Prescribing’. In this episode, we discuss why GP Prescribing is important…
June 27, 2023
Action for M.E. has become a charity partner of Charitable Travel, a travel company that allows holidaymakers to donate a portion of their holiday price to their charity of choice at…
June 14, 2023
We are delighted to announce that our CEO Sonya Chowdhury has been shortlisted as Director of the Year in the Public and Third Sector category in the Institute of Directors’ awards.…
June 01, 2023
The Annual General Meeting (AGM) of the APPG on M.E. took place on Wednesday, May 10. Presentations were given by Sonya Chowdhury, the CEO of Action for M.E., on the implementation…
May 30, 2023
Our FOI report has revealed that people with M.E. are dealing with shockingly poor and patchy provision of services in England. In 2021, the NICE Guideline (NG206) on Myalgic Encephalomyelitis/Chronic…
May 12, 2023
This World ME Day, we are calling for greater understanding in society that pushing harder can make you sicker. For people with Myalgic Encephalomyelitis, post-exertional malaise…
May 02, 2023
The next meeting of the All-Party Parliamentary Group (APPG) on M.E. with be the Annual General Meeting (AGM) on Wednesday 10 May at 2pm.In addition to reconstituting the APPG, the…
April 26, 2023
Champion fundraiser Anna Redshaw’s Blue Sunday Tea Party for M.E. is celebrating its 10th anniversary this year! Anna, who has had M.E. since 2010 and has so far raised over £70,000…
March 27, 2023
Join our Self Advocacy and Self Directed Support (SDS) Scotland Workshop to hear about how you or someone who supports or cares for you can access and advocate for Self Directed Support…
March 16, 2023
We’re delighted to launch our media guidelines to better inform media stories on Myalgic Encephalomyelitis (M.E.) For too long, people with Myalgic Encephalomyelitis (M.E.) have struggled…
February 15, 2023
We’re excited to release the next podcast episode in our Learn about M.E. series, focusing on the ground-breaking DecodeME study and why it is important to people with M.E.The episode…
February 08, 2023
The CPD accredited module on Myalgic Encephalomyelitis (M.E.)/Chronic Fatigue Syndrome (CFS), originally developed by Dr Nina Muirhead with the UK ME Research Collaborative, has been…
February 07, 2023
The World ME Alliance have announced the World ME Day 2023 theme. ME: The disease where pushing harder can make you sicker. For May 12th this year, we will be focusing on post-exertional…
February 01, 2023
We are running a Breaking Isolation workshop for young people aged 15-18, funded by BBC Children in Need.Registration to take part in this workshop is closed, as this workshop is now…
January 26, 2023
Yesterday, we joined the World ME Alliance in writing to Dr Tedros Ghebreyesus, Director General of the World Health Organization (WHO), and Dr Bente Mikkelsen, Director of the WHO…
January 25, 2023
Episode 7 of our Learn About M.E. podcast is live! In this episode, we outline how specialist physiotherapists can support people with M.E. to better manage their physical health.…
January 04, 2023
On 21 December, the Department of Health and Social Care (DHSC) released their latest update providing a summary of the activity underway since 20 September to develop the draft cross-government…
December 13, 2022
On Thursday 26th January 2023 at 2pm we are hosting an online Housing and Self-Advocacy webinar for people with M.E., including carers and supporters, in Scotland. The webinar will…
December 09, 2022
We are running a Breaking Isolation workshop for young people aged 10-14, funded by Children in Need. The workshop will take place in 3 parts, starting at 4.15pm – finishing…
November 18, 2022
We welcome measures in the Chancellor’s Autumn statement to support disabled people with additional cost of living pressures. However, while these measures go some way to recognising…
November 07, 2022
Today, Action for M.E. has joined leading Neurological charities to write a letter to Jeremy Hunt, Chancellor of the Exchequer, about how the cost of living crisis is having a greater…
November 01, 2022
Get Christmassy and creative however you like, whether it’s a drawing, painting, collage, photograph or even a cross-stitch. Your design can be of anything, as long as it fits within…
October 19, 2022
World ME Alliance calls on WHO Director General to recognise M.E. alongside long COVIDPhoto: © WHO / Pierre Albouy On Wednesday 12th October Dr Tedros Ghebreyesus, Director General…
October 05, 2022
We are hosting a Communicating with Health Professionals and Self-Advocacy Workshop for adults with M.E. in Scotland on Friday 21st of October, 2pm. Join Action for M.E.’s trained…
September 27, 2022
Our Annual General Meeting (AGM) was held on Tuesday 20 September, chaired by Roger Siddle, Chair of our Board of Trustees. The AGM covered Action for M.E.’s 2022 to 2027 strategy,…
September 21, 2022
The Department of Work & Pensions (DWP) announced that the Disability Cost of Living Payment will begin to be made available from today.Six million eligible people will receive a one-off…
September 20, 2022
In May, the Department of Health and Social Care (DHSC) shared its pioneering statement on M.E., setting out its intention to develop a cross-Government Delivery Plan on M.E. for England,…
September 15, 2022
Last month, we launched a consultation on our new media guidelines for journalists, and it closed earlier this week. We received a lot of positive feedback about the consultation,…
September 14, 2022
Following the exciting launch of DecodeME on Monday - the world’s biggest genetic study into M.E./CFS we will be hosting our M.E. Genetics Research Summit today as part of Breakthrough-ME,…
September 12, 2022
A note from the DecodeME team We want to let you know that DecodeME has launched and fully opened recruitment. In light of Her Majesty Queen Elizabeth II’s death and this period of…