News

Henley Distillery Open Day raises over £3.5k

July 12, 2024

This #FundraisingFriday we’re celebrating the wonderful people at The Henley Distillery!They opened their doors on Sunday 30 June to host an open day, raising over £3,500 to support…

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Update on the APPG on ME

July 11, 2024

Following the general election, Action for M.E. and the ME Association have provided the following update, as joint-Secretariat for the All-Party Parliamentary Group on ME.“We understand…

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APPG on ME Update - Carol Monaghan

July 05, 2024

Carol Monaghan, previously Chair of the All-Party Parliamentary Group on ME and MP for Glasgow West, has lost her seat in the general election.As joint-Secretariat for the APPG, we…

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#FundraisingFriday - 'A Walk for M.E.' Lee Colligan

July 04, 2024

Back in a June #FundraisingFriday, we celebrated the amazing Lee Colligan who is walking around Ireland’s West Coast and Northern Ireland’s North Coast to raise money and awareness…

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Health and Disability Green Paper Consultation

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…

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New Patrons announcement

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…

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New advocacy resource for people with ME in hospital

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…

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'Researcher Toolkit' for ME/CFS launched

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…

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General election - what happens now?

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…

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Learn about ME and Occupational Therapy podcast

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;…

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DWP's treatment of ill & disabled people investigated

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…

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APPG on ME - Severe ME Inquiry

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…

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Our CEO meets with Mims Davies

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…

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London Marathon team raises over £34,000 for charity

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…

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ME/CFS essay competition winners announced

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,…

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Hammers Heroes beat the Three Peaks Challenge

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,…

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PrecisionLife & Metrodora Institute: Clinical Trials

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…

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Update on the Delivery Plan for ME/CFS from the DHSC

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…

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"People with ME have been ignored for far too long"

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…

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Free activities day at St Albans Museum + Gallery

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…

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World ME Day 2024 | Join our call-to-action

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…

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Westminster Hall debate - an update and statement

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…

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Join us for Blue Sunday 2024

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…

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DWP Green Paper: exploring the review & reform of PIP

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…

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Westminster Hall debate on ME/CFS research

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…

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Jacob Wilson joins our Three Peaks Challenge Team

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…

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Action for M.E. partners with the Henley Distillery

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…

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Free online Mindfulness session for people with M.E.

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…

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Brian's Brighton Marathon success

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…

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#BringMillieHome - our statement

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…

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"ME research in genetics is 20 years behind the times"

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,…

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ITV Granada follow up on specialist Isle of Man clinic

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…

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Hammers Heroes National Three Peaks charity challenge

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…

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ITV News | ME on the Isle of Man

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…

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M.E. in Parliament - John McDonnell MP

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…

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Have You Tried Yoga - Stavrin

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…

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International Conference on M.E./CFS & Long COVID

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…

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Nursing Times on ME/CFS service provision in Scotland

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…

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John McDonnell MP pledges support for M.E.

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…

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Fundraising Friday: Izzy

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…

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M.E. in The Sunday Post

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…

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A #GlobalVoiceForME on World ME Day 2024

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…

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Action for M.E. announces new Trustee, Jeff Banks

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…

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Action for M.E.'s Next Parliamentary Champion

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…

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Response to quotes provided by Professor David Strain

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…

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BBC Defends Airing of Dragons' Den Episode

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…

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Our response to Dragons Den Series 21, episode 3

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…

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New Genetics Research Grant Secured launching LOCOME

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…

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Action for M.E. unveils Parliament Champions network

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.…

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​Learn About M.E. and Paediatrics podcast: listen now

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…

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#PushedIntoPoverty: govt urged to stop benefit changes

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…

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Interim Delivery Plan on ME/CFS - Latest update

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…

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Carol Monaghan MP featured in politics.co.uk

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…

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Celebrating Trustees' Week 2023

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.…

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​Our Christmas e-Card Design Competition is back!

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,…

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Action for M.E. pays tribute to Keith Anderson

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…

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Our response to BACME’s National Services Survey

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…

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Invite your MP to join the next APPG on M.E. meeting

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,…

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National Lottery awards funding to Action for M.E.

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…

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Action for M.E. Manifesto - Write to your MP

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…

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ME/CFS Interim Delivery Plan – Next Steps

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…

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Action for M.E. Consultation Response

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…

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2023 AGM - Securing change for the future

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…

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First Clare Francis Research fellowship awarded

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…

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Our 2022-2023 Annual Report

September 29, 2023

You can find the Action for M.E.

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Janice Kent - a beacon for people with M.E.

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…

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DecodeME Study Announces Recruitment Closing Date

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…

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Self Management Week: sharing our resources

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…

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DecodeME: Initial Questionnaire Findings Published

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…

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2023 Annual General Meeting (AGM)

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…

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Interim ME/CFS Delivery Plan: resources to help you respond

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…

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Release of pre-consultation Delivery Plan on ME/CFS

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…

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Meet One of Our Chaplains

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…

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APPG on M.E. Meeting Minutes Now Available

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…

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New podcast episode: Learn about M.E. & GP Prescribing

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…

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Action for M.E. Partners with Charitable Travel

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…

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Our CEO shortlisted for Director of the Year award

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.…

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Invite your MP to the next meeting of the APPG on M.E.

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…

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FOI Report reveals shocking lack of specialist care

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…

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CEO Sonya Chowdhury on World ME Day

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…

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Invite your MP to the Next Meeting of the APPG on M.E.

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…

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Interview with Anna Redshaw, founder of Blue Sunday

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…

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Join our Self Advocacy & SDS Scotland Workshop

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…

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Media Guidelines for reporting on M.E.

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…

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Learn about M.E. & DecodeME in our latest podcast

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…

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The CPD accredited module on M.E./CFS has been updated

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…

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World ME Alliance announces World ME Day 2023 theme

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…

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Breaking Isolation Workshop - March 2023

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…

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World ME Alliance highlight crucial gaps in WHO report

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…

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Learn About M.E. & Physiotherapy in our latest podcast

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.…

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ME/CFS Delivery Plan: latest update

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…

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Housing and Self-Advocacy in Scotland Webinar

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…

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Breaking Isolation Workshop - January 2023

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…

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Cost of Living Crisis Statement

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…

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Leading Neurological Charities Write to Jeremy Hunt

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…

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Our Christmas e-Card Design Competition is back!

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…

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World ME Alliance calls on WHO Director General

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…

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Communicating with Health Professionals & Self-Advocacy Workshop

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…

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AGM 2022 - Exciting plans for future research!

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,…

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£150 Disability Cost of Living Payments begin today

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…

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