• Help us to support others – donate now and change a life

    Donate now

News

  • A
  • A
  • A
Text size

Office closure on Monday 27 May

May 24, 2019

Our offices and phone lines will not be open on Monday 27 May as it is a Bank Holiday. Normal office hours will resume on Tuesday 28 May.If you need information and support whilst we…
Read more >>


Fundraiser of the week - Jo in honour of Meg

May 24, 2019

Our fundraiser of the week is Jo who will be completing the Jurassic Coast Challenge on June 8. She is doing this on behalf of her best friend Megan who is living with severe M.E. When…
Read more >>


#AreYouMissingMe? - Alice's story

May 24, 2019

Alice is 14 years old and tells us what it’s like to live with M.E. I’ve been missing from society for three years and seven months. I have many different ailments to cope with that…
Read more >>


"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,”…
Read more >>


Man with M.E. - #AreYouMissingMen?

May 22, 2019

Until I was struck down with M.E., I’d always assumed – on the very rare occasions I thought about it – that the disease was more or less exclusive to women. My passive experience in…
Read more >>


#AreYouMissingMen?

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…
Read more >>


'How can I help?' - our new resources for teachers

May 20, 2019

“It was a weight off me when I finally got an answer from the doctor. I could see that people with things like dyslexia got one-to-one support, so why not me? But I was academically…
Read more >>


Social media takeover with Rose

May 17, 2019

As part of our M.E. awareness month campaign, Action for M.E. handed over our social media pages to Rose - a person with severe M.E. She spent the day posting about isolation, her life…
Read more >>


Fundraiser of the week - Anne Roche

May 17, 2019

Our fundraiser of the week is Anne Roche who will be hosting a family fun day in Newton-Aycliffe this Saturday (May 18) 12pm – 5pm. The day will host many fun activities such as…
Read more >>


​Are you missing M.E.? Jo's story

May 16, 2019

The Two Faces of ME - Payback"My name is Jo Moss, I’m 44 years old, I live in Norwich (UK) and I have been missing for 13+ years."As I have mentioned in previous blogs, M.E. patients…
Read more >>


M.E. awareness month - what we've achieved so far and what's next

May 15, 2019

Today marks the halfway point for M.E. awareness month and thanks to the hard work of campaigners, charities and media publications alike, so much has been achieved. So far our organisation…
Read more >>


Fundraiser of the week - Rebecca Almodovar

May 10, 2019

Our fundraiser of the week is Rebecca (pictured) who took part in the Paris Marathon 2019 on behalf of our charity. When speaking about her motivations for taking part in the marathon,…
Read more >>


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…
Read more >>


Meet M.E. drop-in day, Inverness: book your free place

May 09, 2019

Meet M.E. is a free, informal, drop-in event for people with M.E., carers, family and friends, hosted by Action for M.E., M.E. Highlands and Islands Network and The Oxygen Works, on…
Read more >>


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…
Read more >>


Fundraiser of the week - Miyah

May 07, 2019

Our fundraiser of the week is nine year old Miyah, who is having her hair cut to raise money and awareness for M.E./CFS. By doing this she wants to “help towards finding a cure as very…
Read more >>


Social media takeover with Evan

May 03, 2019

As part of M.E. awareness month we will be having our first ever social media takeover by a person with M.E.! What does this mean? On Wednesday 8 May, Action for M.E. will hand over…
Read more >>


Action for M.E.'s 'Big survey'

May 02, 2019

We're undertaking a five-year follow up to our last major survey of people living with M.E. in the UK, asking children and adults about their experiences of health, education, employment,…
Read more >>


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…
Read more >>


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…
Read more >>


Changes to our Information and Support and Welfare services

April 30, 2019

Action for M.E. offers a free Information and Support Service for children, young people and adults with M.E., and their carers and family members. In the past, this service has…
Read more >>


Walk with M.E. - Paige's Story

April 29, 2019

This year’s Walk with M.E. team challenge has been a massive success so far. There are only two weeks left of the challenge and many of our teams have done a fantastic job at counting…
Read more >>


Millions Missing Bristol 2019 - 11 May

April 25, 2019

Are you ready for Millions Missing? This is a global demonstration created by ME Action that calls for health equality for M.E. This will take place throughout M.E. awareness week (6…
Read more >>


Work Capability Assessment debate -"It's the system that is flawed”

April 25, 2019

“The evidence is there, it is the system that is flawed” A spotlight was shone on the issues with the DWP’s Work Capability Assessment on Wednesday 24 April in a Westminster Hall…
Read more >>


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…
Read more >>


Fundraisers of the week - London Marathon 2019 Runners

April 18, 2019

Our fundraisers of the week are our London Marathon runners who will be taking part in the event on 28 April. They have been doing an amazing job preparing for the race, practising…
Read more >>


Office closure for Easter Bank Holidays 19 and 22 April 2019

April 18, 2019

Our offices and phone lines will be closed on Friday 19 and Monday 22 April for Easter. Normal officer hours will resume on Tuesday 23 April. If you need information and support whilst…
Read more >>


Our welfare benefits adviser highlights issues of WCA

April 17, 2019

Our specialist welfare advisor, Sophie Knight, has advised a number of people on work capability assessments (WCA) and we are using her expertise to send Laura Pidcock MP, Shadow Minister…
Read more >>


Our fundraiser of the week - Martyn

April 12, 2019

"I know what you are thinking – ‘in the pictures I see of Kerrie, she looks good...’ Well yes, do you think I would take photos of my wife on a normal day on the sofa in her pyjamas…
Read more >>


Information and welfare benefits: our services

April 10, 2019

Action for M.E. offers a free Information and Support Service for children, young people and adults with M.E., and their carers and family members.In the past, this service has included…
Read more >>


Action for M.E.'s response to the Ofsted Consulation

April 08, 2019

Action for M.E. have responded Ofsted's consultation regarding their proposed changes to the education inspection framework. This framework instructs inspectors on the areas of scrutiny…
Read more >>


Fundraiser of the week - Charles Vaughan-jones

April 05, 2019

Our Fundraiser of the week is Charles Vaughan-jones who will be hosting a Pub Quiz at The Dragon Hotel in Montgomery, Wales. The event will be taking place on April 11. When speaking…
Read more >>


Our new regional advocacy service: what you need to know

April 04, 2019

Our free regional advocacy service has launched today and supports adults (age 18 and over) living with M.E. in the Midlands and South West. Advocacy is a process that helps individuals…
Read more >>


Results of the Forward ME survey for CBT and GET

April 03, 2019

We are pleased to be able to let you see the results of the recent survey conducted on behalf of Forward ME. All the raw data was analysed and inserted into a comprehensive report by…
Read more >>


Office closure - Monday 1 and Tuesday 2 April 2019

March 29, 2019

Our offices and phone lines will be closed on Monday 1 and Tuesday 2 April due to staff training. While we are away, you can still access information and support from us in other ways:Our…
Read more >>


Fundraisers of the week - Holly's Team

March 27, 2019

Our Fundraisers of the week are Holly's team, who are taking part in Walk with M.E. They have just reached their team goal of one million steps!When speaking about her reasons for taking…
Read more >>


Become a volunteer advocate

March 25, 2019

Are you passionate about helping people affected by M.E.? Are you responsible, empathetic, good at listening and a clear communicator? Do you live in the South West or Midlands? Could…
Read more >>


InterAction feature - 'M.E. in the workplace Q&A'

March 25, 2019

M.E. can have an impact on your career and ability to carry out your job. Many people have to reduce their hours, or leave work altogether due to their condition. Have you felt discriminated…
Read more >>


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.…
Read more >>


Bath Half Marathon 2019 - Thank you

March 21, 2019

Last Sunday, 12000 runners and 40000 spectators attended the Bath Half Marathon 2019.Amongst them were Catherine, Natty, Joe, Tom (pictured), Alex, Melissa and Daniel who were running…
Read more >>


Fundraiser of the week - Sally

March 21, 2019

We'd like to thank Sally, our fundraiser of the week for raising money and awareness towards M.E. and our charity.She did this by generously asking her friends to donate to her birthday…
Read more >>


Medication law changes to pregabalin and gabapentin

March 21, 2019

If you have been prescribed pregabalin (Alzain or Lyrica) and gabapentin (Neurontin), it is important to be aware that the government will be changing their medication laws from 1 April…
Read more >>


​Walk with M.E. – Bethan’s story

March 20, 2019

Our Walk with M.E. campaign has now been going on for over a month and a half. During this time, our teams have been working hard to reach their collective goal – one million steps.…
Read more >>


#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…
Read more >>


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…
Read more >>


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…
Read more >>


Fundraiser of the week: Alice, in honour of Katie

March 08, 2019

Another inspirational woman is our fundraiser of the week, Alice, who will be running the London Marathon in April. She will be running the event in honour of her best friend Katie…
Read more >>


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,…
Read more >>


Aged up to 19 and living with M.E.? Join our new forum

March 07, 2019

Young people with M.E. have told us that the lack of awareness and understanding of their condition makes them feel very lonely. For those unable to leave their homes because of the…
Read more >>


Commons M.E. debate discussed on BBC Radio Bristol

March 07, 2019

BBC Radio Bristol’s John Darvall will highlight M.E. and its impact on his programme this morning. Following an interview with Liz, a local woman living with M.E., John will speak…
Read more >>


Educate M.E. reflection and development meeting

March 05, 2019

Action for M.E. hosted a reflection and development meeting on 23 February as part of Educate M.E. - a one year project set up to develop and deliver awareness raising sessions in secondary…
Read more >>


Fundraiser of the week - Oliver Vaughan-Jone

February 28, 2019

Our fundraiser of the week is Oliver Vaughan-Jones, an artist in Wales."I started to paint again as a way to cope with the pain and disorientation arising from a debilitating neurological…
Read more >>


Combating isolation - our new young people's forum

February 27, 2019

Research has found that M.E. causes an enormous loss of independence and self-esteem. Our young people’s community combats the isolation and social exclusion faced by many young people…
Read more >>


M.E./CFS in Parliament: more written questions

February 26, 2019

We are pleased to see that there has been increased engagement from Members of Parliament surrounding M.E./CFS. Following last month’s M.E. debate there has been nine written questions…
Read more >>


Have you received good or poor care?

February 20, 2019

The Care Quality Commission (CQC) is asking people who have experienced good or poor care to let them know by completing an online form anonymously. They are seeking views of a wide…
Read more >>


Department of Transport Blue Badge eligibility workshop

February 18, 2019

Action for M.E. has attended a workshop with representatives from the Department of Transport to discuss changes to the Blue Badge eligibility guidance. In 2018 the Government announced…
Read more >>


​Latest research: Onset patterns and more

February 15, 2019

Supporting you to stay informed about M.E. research, we aim to publish regular round-ups of papers published in peer-reviewed journals. Please note this is not an exhaustive list…
Read more >>


NICE guideline review: for children and young people

February 14, 2019

The National Institute for Clinical Excellence (NICE) are reviewing their guidance titled, “children and young people with disabilities and severe complex needs: integrated health and…
Read more >>


Scottish National Action Plan consultation - our response

February 13, 2019

Action for M.E. has submitted a response to the Scottish Government’s consultation on the National Action Plan on Neurological Conditions. Our response highlights several areas of concern…
Read more >>


Fundraiser of the week - Bron's Vegan Brownies

February 08, 2019

Our fundraiser of the week is Bron’s Vegan Brownies – an independent business set up by 18 year old Bron. When speaking about her daughter’s business Elaine, her mother, says: “Super…
Read more >>


​Educate M.E. awareness raising session South Ayrshire

February 08, 2019

Teachers in South Ayrshire have been learning about the impact of M.E. and how to support young people with the condition, thanks to Action for M.E.’s Educate M.E. project in Scotland.…
Read more >>


​Health Research Authority on the PACE trial

February 07, 2019

Sir Jonathan Montgomery, Chair of the Health Research Authority, has written to the Science and Technology Select Committee to say that the HRA has “no regulatory concerns about the…
Read more >>


InterAction needs you: managing sleep

February 06, 2019

In the spring issue, our Medical Advisor Dr Gregor Purdie will be taking a look at sleep disturbances. These are common for people with M.E. and/or CFS and can include unrefreshing…
Read more >>


Fundraisers of the week - Walk with M.E. teams

February 01, 2019

Exciting news! Today is the official launch of Walk with M.E. 2019 and it’s already looking to be our biggest year yet. We'd like to celebrate the launch by making all of our walkers…
Read more >>


​What you need to know about Winter Fuel payments

January 30, 2019

Are you born on or before 5 November 1953? You may be entitled to a Winter Fuel payment. What is it? A Winter Fuel payment is a one-off, tax-free payment of between £100 and £300…
Read more >>


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…
Read more >>


Minutes now available: CMRC January board meeting

January 28, 2019

Minutes from January’s meeting of the Board of the UK CFS/M.E. Collaborative (CMRC) are now available to read. This gives updates on:Medical Research Council Strategy Board – a paper…
Read more >>


Important update: our Information and Support Service

January 25, 2019

Action for M.E.’s Information and Support Service will be closed for one week from Monday 27 January to Friday 1 February. Due to staff sickness affecting capacity, and considerably…
Read more >>


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…
Read more >>


Commons debate on M.E. at 2pm today

January 24, 2019

Carol Monaghan MP, Member of the UK Parliament for Glasgow North West, will lead a House of Commons debate on M.E. at 2pm today.This follows her Westminster Hall debate in June on research…
Read more >>


InterAction 100 now available in audio format

January 21, 2019

The winter issue of our membership magazine, InterAction, is now available to stream or download in audio format via Soundcloud.This edition of InterAction is special as it is the 100th…
Read more >>


Have your say - support for your M.E. in school

January 18, 2019

Action for M.E. wants all children living with M.E./CFS to get the support they need in school. We need to make sure we are focusing on the issues that matter most to families affected.…
Read more >>


Commons debate on M.E. confirmed for 24 January

January 17, 2019

Carol Monaghan MP, Member of the UK Parliament for Glasgow North West, has confirmed that the Backbench Business Committee has agreed to a debate on M.E. taking place next Thursday.Following…
Read more >>


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…
Read more >>


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…
Read more >>


Fundraisers of the week - EHU Marvel Society

January 11, 2019

We’d like to say thank you to the Edge Hill University Marvel Society, who have chosen to raise money and awareness for our charity. They will be hosting an event on the 22 January…
Read more >>


​Forward ME's CBT and GET patient survey

January 11, 2019

Forward M.E. has launched a survey to gather evidence and experiences of Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT).The National Institute of Health and Care…
Read more >>


Join us for Walk with M.E. 2019

January 09, 2019

Whoever you are, wherever you are, help us Walk with M.E. Walk with M.E. is a sponsored walk with a twist: everything is done as a team. This means you can take part if you would like…
Read more >>


Action for M.E. hosts DWP spotlight training

January 07, 2019

A range of people from the Department for Work and Pensions had the opportunity to learn more about M.E. and its impact on claimants, in a training session led by Action for M.E. just…
Read more >>


Fundraiser of the week - Alice

January 04, 2019

We’d like to say thank you to our fundraiser of the week Alice who will be running the London Marathon in 2019 in memory of her best friend Katie, who passed away in 2015.“The charity…
Read more >>


Our new years resolutions

January 01, 2019

Now that 2018 has come to an end here are some of the things that we have achieved over the last year: However, there is so much more that we want to do. Here are our new year’s…
Read more >>


Fundraiser of the week - Emily

December 28, 2018

We'd like to say thank you to our fundraiser of the week Emily Price, a singer who has been raising money for our charity by selling CDs.The album is inspired by Christmas and features…
Read more >>


Fundraiser of the week - Rebecca

December 21, 2018

Our fundraiser of the week is 11-year-old Rebecca who has been raising money for our charity by selling handmade jewellery. Diagnosed with M.E. two years ago, Rebecca has done amazingly…
Read more >>


Commons' Science and Technology Committee enquiry

December 18, 2018

In October, the House of Commons’ Science and Technology Committee asked the public to inform them on potential areas of scrutiny. The committee expressed an interest to hear suggestions…
Read more >>


Aged 13 to 23 and have M.E./CFS in Scotland?

December 17, 2018

Are you aged 13 to 23 and living with M.E./CFS in Scotland? We want to hear from you! Schools can struggle to get it right for children and young people with M.E. Although M.E. is the…
Read more >>


ME Highland and Islands Network partnership

December 12, 2018

Action for M.E. have partnered with the ME Highland and Islands Network (ME Highlands) in order to reach more people with M.E. in Scotland. ME Highlands works to highlight the lack…
Read more >>


Info and Support Service: welfare benefits referrals

December 06, 2018

Action for M.E. offers a free Information and Support Service for young people and adults with M.E., and their carers and family. Our friendly Information and Support team understand…
Read more >>


CMRC Board meeting: latest update

December 04, 2018

A short written report from last month's meeting of the Board of the UK CFS/M.E. Collaborative (CMRC) are now available to read on our CMRC page, giving updates on:the CMRC's priority-setting…
Read more >>


IAFME submits trans-national consensus document to WHO

December 04, 2018

The International Alliance for Myalgic Encephalomyelitis (IAFME) has produced a trans-national consensus document covering Myalgic Encephalomyelitis (M.E.). Recognition, research and…
Read more >>


Improving lives, inspiring change: AGM & annual report

November 30, 2018

"The most important feature of Forward M.E. is that we work together for the common good; never was the principle of 'divide and rule' more prevalent than in the word of M.E." said…
Read more >>


Big Give Christmas Challenge- what you need to know

November 26, 2018

The Big Give Christmas Challenge will be starting at noon tomorrow, and will run until midday on Tuesday the 4 December. Throughout this week any donation made to us through the Big…
Read more >>


Fundraiser of the week - Big Give pledges

November 23, 2018

This week’s fundraiser of the week is everyone who has pledged to donate to us during the Big Give Christmas Challenge that starts at noon next Tuesday. In particular, we would like…
Read more >>


​We need your help! Connect M.E. survey

November 20, 2018

Action for M.E. are testing out an idea we have for a new project that could potentially help support people with M.E. nationwide.This project would aim to link healthy volunteers with…
Read more >>


Temporary phone-line maintenance

November 20, 2018

From noon today, the office phone-lines will be temporarily down as we undergo essential maintenance to our phone system. These improvements will mean that we are better able to provide…
Read more >>


Fundraisers of the week - Bowls Cornwall club

November 16, 2018

Action for M.E. would like to say a huge thank you to our fundraisers of the week- the Bowls Cornwall club- for raising £1,200 on behalf of our charity. Peter Prynne presented a check…
Read more >>


Can you help? Run a stall this Christmas

November 15, 2018

Can you help us? Action for M.E. are looking for volunteers to help us raise critical funds and awareness to support the 250,000 children, young people and adults living with M.E.…
Read more >>


NICE guideline development committee update

November 13, 2018

Action for M.E. welcome the appointment of Dr William Weir to the National Institute for Health and Care Excellence (NICE) guideline development committee. Dr Weir is currently the…
Read more >>


​Welfare Advice and Support Service now open

November 12, 2018

We are pleased to announce that our Welfare Advice and Support Service has re-opened, following a period of temporary closure. Please call our Information and Support line on 0117…
Read more >>


Thank you to everyone who participated in RideLondon

November 08, 2018

All of us at Action for M.E. would like to say a huge thank you to Peter Wharton, Alistair and Pete Hughs, who formed our small, but amazing 2018 Prudential RideLondon – Surrey 100…
Read more >>


Latest Research: post-exertional malaise & more

November 07, 2018

Trigger warning: this post features content of a sensitive nature regarding suicide. Supporting you to stay informed about M.E. research, we publish regular round-ups from Action for…
Read more >>