News

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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ME/CFS Delivery Plan: latest update

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,…

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​Media Guidelines consultation: thank you

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,…

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Our first M.E. Genetics Research Summit begins today

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,…

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DecodeME is open and you can take part!

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…

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Join our Breaking Isolation Workshops

September 05, 2022

Our Breaking Isolation Workshops for young people aged 15-18, funded by Children in Need are back. Do you want to learn more? The workshop will take place in 3 parts on the following…

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Hear about research, services and future plans at our online AGM

August 18, 2022

All are welcome to attend Action for M.E.'s 2022 Annual General Meeting (AGM) where you can meet Action for M.E. staff and Trustees and hear how we’ve worked with and supported people…

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Consultation on Media Guidelines for M.E.

August 18, 2022

This consultation seeks feedback on suggested media advice for journalists reporting on M.E. and developing a helpful handbook of best practices for distribution to media outlets. …

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DHSC proposal on the Delivery Plan on M.E./CFS

August 17, 2022

Today (17 August), the Department for Health and Social Care has published further information about the cross-government Delivery Plan on M.E./CFS, which was announced by the Government…

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BEIS provide further support for households this Winter

August 11, 2022

As the UK approaches an unprecedented energy crisis this Winter, the National Energy Action predicts that 8.7 million UK households will be in fuel poverty. This is double the 4.5 million…

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M.E. Genetics Research Symposium

August 04, 2022

Earlier this month we shared an exciting save the date. We now have the date of Wednesday 14th September for our M.E. Genetics Research Symposium.It will be held at the University of…

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Has your PIP application been delayed?

August 03, 2022

Did you know we are part of the ME Local Network? Who are MELN? The ME Local Network was set up last year to bridge together M.E. friendships and support groups across the UK. The…

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World ME Alliance do not endorse the Lightning Process

August 03, 2022

Members of the World ME Alliance have worked together to reach a collective position on the Lightning Process.The Lightning Process is a commercial training programme that is promoted…

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Do you know about the ME Local Network (MELN)?

July 26, 2022

The MELN was set up in 2021 to bring together M.E. friendship and support groups across the UK.The aims of the MELN are: To create a national network of local M.E. groups to provide…

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Join our Employment and Self-Advocacy webinar

July 19, 2022

We are holding an Employment and Self-Advocacy workshop for adults with M.E. in Scotland on Thursday 28th July, 2pm.Join Action for M.E.’s trained and knowledgeable staff and volunteers…

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#Standup4EllaCopley

July 18, 2022

*Please note you may find this content distressing* Earlier this morning Jo Mckee, mother of Ella Copley, appeared on Times Radio to discuss the treatment her daughter Ella, who has…

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Scottish Government backs NICE Guideline

July 11, 2022

In December 2021, the Scottish Government commissioned Blake Stevenson Ltd to engage with stakeholders, including national charities, local support groups, health and social care clinicians,…

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The resignation of Sajid Javid as Secretary of State

July 06, 2022

Last night news broke that the Secretary of State for Health and Social Care Sajid Javid had resigned from his role. This has left people with M.E. feeling concerned because Mr Javid…

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Join our Housing in England webinar

June 28, 2022

You are invited to join us for a Self-Advocacy webinar via Zoom live on Tuesday 26 July 12:30 pm-2:30 pm hosted by our friendly Advocacy team. The webinar will be centred around…

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Action for M.E. announce a second ground-breaking PhD

June 17, 2022

Action for M.E. is delighted to announce a second ground-breaking PhD, this time in conjunction with the University of Oxford. This comes shortly after announcing our jointly funded…

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Action for M.E. & ME Research UK launch pioneering PhD-level research

June 17, 2022

Action for M.E. and ME Research UK are delighted to announce the launch of a new ground-breaking PhD-level research project in conjunction with King’s College London. This collaborative…

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Our call for a Recovery & Respite Plan for Unpaid Carers

June 10, 2022

As this week is Carers Week, there has never been a more important time to recognise, value and support the thousands of individuals caring for their loved ones. This is particularly…

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Listen to M.E. launches

May 19, 2022

Are you feeling lonely? Want to talk to someone who understands M.E.? Our new project, Listen to M.E., aims to help adults affected by M.E. feel less isolated. Our fully trained…

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Transforming lives on World M.E. Day

May 12, 2022

Action for M.E. welcomes the Department of Health and Social Care’s pioneering statement on Myalgic Encephalomyelitis (M.E.) on the first ever World M.E. Day.Ministers set out plans…

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Putting the ME/CFS guideline into practice

May 12, 2022

Today marks the first World M.E. Day and we are pleased to see National Institute of Health and Social Care Excellence (NICE) have outlined the steps needed to put the guideline for…

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Secretary of State supports the M.E./CFS PSP priorities

May 12, 2022

Over the past two years, we have been working with the M.E. community to find out the research priorities that matter most. By asking those with lived experience, carers and clinicians…

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Shaping our future together: our call for a national strategy for M.E.

May 05, 2022

As we approach the World ME Day on 12 May, we launch Action for M.E.’s new five-year strategy, Shaping our future together. We also have a simple-text version. Developed in partnership…

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Take Action! What should the world #LearnFromME?

May 05, 2022

There is only a week to go until World ME Day on the 12th of May, and as part of this year’s theme, #LearnFromME, the World ME Alliance has released a series of actions to help make…

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Warm Home Discount denied to thousands with disabilities

April 21, 2022

With energy bills rising 14 times faster than wages, households this winter are predicted to see a fall in real-wage income by nearly £1,000. British Gas further estimates that energy…

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Blue Sunday 2022 - The Tea Party for M.E.

April 19, 2022

After an amazing year in 2021, raising over £20,000 for M.E. charities across the world, champion fundraiser Anna Redshaw is inviting you to take part in her Blue Sunday Tea Party 2022,…

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Do you have severe M.E. or care for someone who does?

April 13, 2022

Do you have severe M.E. or care for someone who does? The latest edition of Severe ME/CFS: A Guide to Living is now available. Published in 2010, this invaluable book was written…

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Lifting of Covid restrictions today

April 01, 2022

Responding to the lifting of the Covid restrictions today (1 April), Action for M.E.’s Ruth Richardson, Director of Business Support and Development said:“For many people with M.E.…

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Did you attend the Learn about M.E. webinar?

March 30, 2022

Were you one of the many who attended the Learn about M.E. Social Care webinar on M.E./CFS & Long Covid? If you were unable to attend, you will be pleased to know that we have shared…

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Breakthrough-ME: our plan to rapidly grow research

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…

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Living with M.E. - A photographic study

February 24, 2022

Would you like the opportunity to share your story about what it is like to live with M.E. through a photograph? Photographer and film maker, Jeremy Jeffs, is launching an inspirational…

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Informing professional practice - Learn about M.E. Webinar

February 22, 2022

Action for M.E. is hosting a webinar on M.E./CFS (Myalgic Encephalomyelitis or Chronic Fatigue Syndrome) for anyone working in social care or social work at 1:30 on Thursday 17th of…

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Launch of our Action for M.E. Healthcare Services

February 01, 2022

We have now completed our merger with The ME Trust and from Tuesday 1 February 2022 will be offering Healthcare Services in addition to our Information, Support & Advocacy Services.…

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Our merger with the ME Trust - date confirmed

January 21, 2022

In September 2021 we announced our decision to merge with The ME Trust following a process of due diligence started in June, and after consulting with key stakeholders of both charities.…

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We were on ITV Celebrity Catchphrase

January 20, 2022

We were honoured to see Scottish actor Mark Bonnar appear on ITV’s popular game show Celebrity Catchphrase playing for Action for M.E last weekend. Mark is known for his roles as Max…

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Our new ambassador - Jennie Jacques

November 30, 2021

We are delighted to welcome actor Jennie Jacques as an Action for M.E. Ambassador. Jennie Jacques is a British actor who came to fame in the drama Desperate Romantics, which aired…

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Teachers want to know how to support pupils

November 08, 2021

The Teachers Educational Supplement (TES) are the leading outlet for providing content, support, and resources for teachers throughout the United Kingdom at the start of their career,…

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Christmas Card Design Competition

November 08, 2021

Do you like to be creative? With the festive season on the way, we are launching our Christmas e-Card Design Competition! You could do a drawing, painting, collage, digital drawing,…

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