@MEActNetUK

BBC Inside Science - How rare are Greenland’s rare earth elements? - BBC Sounds

Aberdeen woman reveals chronic fatigue struggle to prove she wasn’t just 'tired'

News Article - MEAction UK

I got a virus, I didn't die, but I never recovered. We are the #MillionsMissing.

Petition update · Karen’s PICC line needs changing again soon. · Change.org · Change.org

News Article - MEAction UK

Volunteer - MEAction UK

TotalGiving™ - Donate to Charity

Contact - MEAction UK

Identification of Novel Reproducible Combinatorial Genetic Risk Factors for Myalgic Encephalomyelitis in the DecodeME Patient Cohort and Commonalities with Long COVID | medRxiv

Summary Precision Life messages

Health Board Summary

Parliamentlive.tv - Westminster Hall

Find MPs - MPs and Lords - UK Parliament

No Evidence Supports Using Graded Exercise for ME/CFS

Petition update · Karen update: Mental capacity assessment & response from East Sussex NHS Trust’s solicitors. · Change.org · Change.org

Find your MSPs

Scientists develop a high accuracy blood test to diagnose Chronic Fatigue Syndrome

Scientists develop first ‘accurate blood test’ to detect chronic fatigue syndrome | ME / Chronic fatigue syndrome | The Guardian

Written question and answer: S6W-40743 | Scottish Parliament Website

Severe ME Artists Project 2025

Can science crack the mystery of ME? – podcast

As my daughter died of ME, the state met in secret to blame me

Good Morning Scotland Interview - 07-08.mp4

Today - 07/08/2025 - BBC Sounds

ME study shows it is not a ‘made-up disease’ says Lib Dem MP

ME linked to your genetics - early study indicates

Huge study of ME/CFS reveals genetic 'hotspots' linked to the debilitating syndrome

Key genetic differences found in people with chronic fatigue syndrome

Scientists find link between genes and ME/chronic fatigue syndrome

The FT

BBC Scotland Decode ME Results

ME is a real illness, genetic study shows

Breakthrough genetic study offers treatment hope for ME patients

BBC One - Reporting Scotland, News at Seven, 06/08/2025

Home - DecodeME

Our response to the DHSC ME/CFS Delivery Plan

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): the final delivery plan

My daughter died from ME. This new plan fails her and others like her

BBC Breakfast - DHSC Delivery Report

Boost in support for patients with chronic fatigue syndrome or ME

Sign the Petition Karen Gordon

10 Year Health Plan for England: fit for the future

Third delay to ME care plan prompts backlash from patients

Chronic fatigue is not in your head, it's in your blood - experts

Radio Scotland - Listen Live - BBC Sounds

Minutes for APPG meeting: 14 May - All-Party Parliamentary Group on ME

Art installation inspired by ME coming to Bristol and Glastonbury

The Mirrorbox Journey – I Would Be Here If I Could...

Severe ME/CFS Requires Biomedical Research and Care—Not Biopsychosocial Spin

I'm 18 and bed bound with long Covid

The new proposed welfare reforms: understanding the impact on people with Long Covid and ME/CFS

In Limbo

SOS: Save our Science

Scope UK Open Letter to the Chancellor

Open Letter to The Rt Hon Wes Streeting and Ashley Dalton MP | March 2025

Invest in Long Covid & M.E. Research: Thousands of Children DISABLED, DISCHARGED, & HIDDEN FROM VIEW | 38 Degrees

Pathways to Work: Reforming Benefits and Support to Get Britain Working Green Paper

‘We’re losing decades of our life to this illness’: long Covid patients on the fear of being forgotten

If we can’t learn from errors, families relive tragedy for nothing

Plan to help ME sufferers will not include extra funding

M.E. Awareness and Reform

Upcoming APPG meeting: 5th March - All-Party Parliamentary Group on ME

Cochrane Collaboration Cancels Independent Analysis of Exercise Therapy Review for ME/CFS

#NotJustFatigue Video Series: Interview with Creator Elizabeth Ansell

#MEAction UK’s Response to DHSC (My full reality: the interim delivery plan on ME/CFS)

NHS Royal Devon | Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS)

Scottish Government set to make first ME funding commitment

NHS to review ME services after death of Maeve Boothby O’Neill

Scotsman article

Scottish Budget 2025-2026

APPG Inaugural Meeting - 17 December 2024 - All-Party Parliamentary Group on ME

Postcards to Doctors

#MEAction Scotland response to the survey of Health Boards

#MEAction & Mayo Clinic Projects Continue - New Grant Awarded

Written questions and answers - Written questions, answers and statements - UK Parliament

Calls for government support for people with ME

My daughter died of ME. I had to fight the NHS for answers

Fund Roadmap

Severely ill patient with ME begs for home feeding

Ignored, blamed, and sometimes left to die – a leading expert in ME explains the origins of a modern medical ‘scandal’

My daughter died of ME. I had to fight the NHS for answers

Maeve Boothby O’Neill died because of a discredited view of ME. How was this allowed to happen? | George Monbiot

My son has ME - doctors blamed my anxiety

#MEAction UK's annual report Oct 2022 - Oct 2023

Coroner tells NHS to act on 'nonexistent' ME care in wake of 27-year-…

Streeting must act to give ME patients the care they need

The Guardian view on the coroner’s role: if deaths can be prevented, they should be | Editorial

BBC Today Programme - Prevention of future deaths report

Times Radio - Prevention of future deaths report

Coroner highlights lack of specialist ME care

Address ‘non-existent’ severe ME care or risk further deaths, UK health minister told

Maeve Boothby O'Neill: Prevention of Future Deaths Report - Courts and Tribunals Judiciary

Not a single bed set aside to treat ME in any UK hospital, says NHS director

Coroner to call for specialist ME services after Boothby O’Neill death

#MEAction UK's email/letter to Andrew Gwynne MP

Breakfast - 27/08/2024

I was picked for Team GB. Then long Covid dashed my Olympic dream

‘Our Daughter’s Death Was Preventable’ Calling for Change in the Care of M.E. Patients

Reliving my daughter’s death was relentlessly heartbreaking

27-year-old died from malnutrition due to severe ME, inquest finds

Father of woman, 27, who died of ME slams 'systemic failing' of NHS

What is ME and why is the NHS approach to it being criticised?

Woman died from malnutrition due to ME, coroner finds | ITV News

Father of ME sufferer calls for ‘radical’ reform in the treatment of the illness

Woman died from malnutrition due to ME, coroner finds | ITV News

Severe ME Artists Project 2024

My husband is bedbound with ME at 37. I grieve for the life we had

Maeve Boothby-O'Neill's death 'wholly preventable', says mother

Mum fears daughter's ME death could 'too easily' happen to someone else | ITV News

Hugs were too painful for ME patient before she died, mother tells Exeter inquest

ME patient ‘would have received better care if she had eating disorder’

‘A horrible way to die … and no doctors can help you’

NHS staff treated woman who died from ME ‘as if she was to blame’

ME patient’s consultant tells inquest staff’s unfamiliarity with condition was ‘unfortunate’

Inquest continues for woman, 27, who died from debilitating ME

NHS has no specialist ward for ME patients, inquest told

ME patients face specialist bed shortage, inquest hears

NHS wards not capable of treating ME patients, expert tells Exeter inquest

Bombshell letter to Karen with ultimatums & deadlines from East Sussex Healthcare NHS Trust

Devon woman with ME asked GP to help her ‘get enough food to live’, inquest hears

Inquest begins into the death of 27-year-old who fought ME for years

Exeter woman died months after begging GP for help, inquest hears

Karen update: Trouble with tubes and other things.

www.cpdconnect.nhs.scot

Childhood, interrupted: 12-year-old Toby’s life with long Covid

‘I could bench-press 100kg. Now, I can’t walk’: Lucy’s life with long Covid

Questions to Ask Prospective MPs About ME/CFS

Schedule - Drystone Radio

Long Covid course is ‘exploiting people’, says ex-GB rower

Media - DecodeME

Ren on Instagram: "When I was first diagnosed with M.E. the amount of support and understanding of this illness was very low. I was left to suffer with no real explanation as to why. People go from living fully active lives to trapped in bed, sometimes fo

Postcards to Doctors

RCPE: ME/CFS and Long COVID | RCPE Events

‘Blue Sunday’ 2024

Sherwood Forest Hospitals NHS Foundation Trust

- YouTube - Moving Mountains Goodbye

- YouTube - Nic Wilson reads ‘A Quince in the Hand’

- YouTube - Dillon Jaxx reading, ‘my body is not my country’

- YouTube - Louisa Adjoa Parker reading ‘Under a Wide Blue Sky: Chronic Illness, Nature and Me’

- YouTube - Louise Kenward reads ‘Things in Jars’

- YouTube - Feline Charpentier reads, ‘Beats Per Minute’

- YouTube - Alec Finlay reads, ‘the poet limps in words as a balance for worlds’

Link to buy Moving Mountains

Moving Mountains - Creative Writing Workshop

YouTube - Moving Mountains Introduction

United Kingdom - World ME Alliance

People with ME have been ignored for far too long

Postcards to Doctors

Kara Jane

RCPE: ME/CFS and Long COVID | RCPE Events

Parliamentlive.tv

Dragons’ Den, BBC One, 18 January 2024 | Contact the BBC

#MEAction Scotland & UK Campaign

Westminster Hall debate on ME/CFS research

BBC Northwest Tonight Clip about Millie who has Severe #MECFS

More stress and a plea to St Marks

Family stage protest outside hospital over medical treatment of 18-year-old girl | ITV News

World's largest genetic study of ME offers hope to sufferers

'I can't walk, talk or eat - doctors don't believe me and I think I'll die'

‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal | George Monbiot

ME services in ‘dire’ state after death of specialist nurse | Nursing Times

#MEAction Is Offering A Very Modified Movement Class

UPDATE ON MILLIE'S CARE

NICE guideline on ME/CFS: robust advice based on a thorough review of the evidence

Patients living with ME feel 'abandoned over lack of support’

Save Millie's life - sign the petition

Sign Karen Gordon's petition

The Nine - 20/02/2024

ME services at 'rock bottom' in Scotland say campaigners

Good Morning Scotland - 20/02/2024 - BBC Sounds

‘Blue Sunday’ 2024

#MEAction UK's letter to The Telegraph, Feb 2024

'The Dragon's Den debacle shows we urgently need more research into ME/CFS'

'ME cruelly killed my daughter - the Dragons' Den scandal is a disgrace'

Dragons' Den episode edited after ear seed complaints about Giselle Boxer pitch

'Dragons' Den scandal has caused untold damage - pulling episode is not enough'

Dragons' Den: BBC defends show after ME criticism of Acu Seeds

Doctors complain to BBC over Dragons’ Den contestant’s claim ‘to have cured ME’

Dragons' Den entrepreneur accused of 'selling snake oil'

Dragons’ Den criticised for claim that ‘ear seeds’ can cure ME

ME charities criticise Dragons' Den for 'promoting unproven treatment' | ITV News

www.actionforme.org.uk

Pillow Writers' Salon

Sign the Petition

Recordings - ME/CFS Research Roadmap Webinar Series

A celebration of Beth Mazur's life

ME essay competition for Scotland-based medical students

Sad News From Our Community — Content Warning

Christmas and Holiday online resources for the UK

Facets of ME: Travel Tips

A Year of Exciting Medical Education Achievements

Hospitals have no services for most severe ME cases, coroner told

Learn about M.E.

Mum's heartbreak as daughter, 27, loses severe ME battle

Our plan to improve the lives of people with ME/CFS (easy read)

#MEAction's Fall Virtual Artist Salon

www.mayoclinicproceedings.org

MEAction Scotland’s Response to: My full reality: the interim delivery plan on ME/CFS

#MEAction UK’s Response to DHSC (My full reality: the interim delivery plan on ME/CFS)

Major study hopes to tackle ME stigma

JNNP

Community Call Slides

www.washingtonpost.com

DHSC ME/CFS Consultation Community Call - 18.09.23

Women with ME tend to have more symptoms than men, study suggests

Take Part - DecodeME

Join our Cloud HD Video Meeting ME/CFS Research Roadmap

Our book is published! Here's everything you need to know...

Health risks can persist at least 2 years after COVID-19, new data suggest

#MEAction UK interim update on JNNP complaint.

www.science.org

Severe ME Artist Project 2023 — Gallery

DHSC Consultation - FAQ

UK Government consultation on ME/CFS interim delivery plan

Times article: NHS told to stop blaming ME patients for being ill and improve care

Removal of rapid response from JNNP website

Prof Danny Altmann: the burden of long COVID

Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis

Our grief for Maeve is frozen in time by the wait for an inquest

MEAction UK submits a rapid response to the JNNP in support of NICE.

ME/CFS guidance that discourages exercise is flawed, say researchers

MEAction UK's response to the Guardian article 11 July 2023

Money’s the motive for calling ME a myth - The Conservative Woman

Pillow Crafters - Group Crafting Sessions

A mirrorbox and map taking messages from people with CFS/M.E. or long COVID to places they love but can no longer get to

Home - DecodeME

Chronic Illness Survey Adventure

Research into long Covid is crucial to get people working again

Cost of Living: Financial Support for Disabled People — [Sir Robert Syms in the Chair]

UK Government petition: Funding for research into Long Covid and ME

COVID Long Haulers Protest in DC: "Pandemics Are Chronic"

UNREST Feature Documentary

‘Blue Sunday’ Donations

RAISING FUNDS FOR ME with Bake4me

#MillionsMissing 2023: “Telling Your Story- In Under A Minute!” Training

The NIH has poured $1 billion into long Covid research — with little to show for it

Join the UK and Scotland’s digital campaign this #MillionsMissing

The Long Haul: Millions with COVID Face Chronic Illness as Biden Declares End to National Emergency

ME/CFS: The Neglected Pandemic — The Otter

Cardiovascular and haematological pathology in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): A role for viruses

Moving Mountains Pre-order

Moving Mountains Workshops

Woman with Severe ME and EDS starving to death in NHS hospital

ME patients ‘risk dying of starvation’ under NHS care

Sign the Petition to save Alice Barrett's Life

12 Sneaky Causes Of Heart Palpitations That Aren't Stress Or Caffeine

Pillow Writers

#MEAction’s “Writing From Our ME Lives” Writers’ Salon —The Pillow Writers

When the doctor doesn’t listen

#MEAction's "Writing From Our Lives" Writers' Salon

Kara Jane: A Heartbreaking Announcement

Christmas and Holiday online resources for the UK

Chronically Complex: The #MEAction Podcast

Largest genetic study of ME could finally provide answers around the condition

#MEAction’s BOLD Press Strategy Leads to BIG Press Payoff!

Action for M.E. podcast on ME and nursing - inc. #MEAction volunteer

Chronically ill people have had to protest yet again for basic support

Can long Covid research unlock other great medical mysteries of our time?

Belle and Sebastian singer: Living with ME makes me feel like a ‘non-person’

#MILLIONSMISSING LONDON October 2022--NEW DATE

#MillionsMissing Scotland in the Scottish Sunday Express

#MillionsMissing Scotland in the Daily Record

DHSC release progress update.

Take part in DeCode ME

Long COVID Was a Preventable Tragedy. Some of Us Saw It Coming

Templates for letters/emails to Wellcome Trust

WEBMD - Long COVID Mimics Other Post-Viral Conditions

Could tiny blood clots cause long COVID’s puzzling symptoms?

Chronically Complex Podcast

Classic Mens MM t-shirts on sale

Classic Women's MM t-shirts on sale

Buy #MillionsMissing t-shirts

Inside Science Radio 4 - Prof Kell talks about micro clot research in ME

Join #MillionsMissing London on 13th September

Join #MillionsMissing Scotland on 14th September

The Times - Hospital has left my daughter in ME agony, claims mother

Severe ME Artists Project 2022

#MEAction Scotland Community Call - 13.07.22

SEND green paper survey link

ME Caregiver Support Call 18.06.22

The Times report Sajid Javid APPG report launch

Full #MillionsMissing Global Virtual Event Video

Scottish Government Debate on Long Covid

The Times - Sajid Javid promises radical action for patients debilitated by ME

NICE Implementation Statement

Moving Mountains Creative Writing Video

Tea Party for ME

Moving Mountains Creative Writing Workshop

#MillionsMissing Letter to the Editor Toolkit

Storytelling to Motivate Action

Hertfordshire ME/CFS Support Group Art Exhibition

#MillionsMissing 2022 T-shirts

Decode ME FAQs

StopRestPace

Guardian article about EBV

Invite your MP to the APPG template

New adult disability benefit for Scotland

Caregivers Call

Online event: Making the new NICE guideline work for people with ME

How Long Covid Is Shaping Up To Be A Feminist Fight

Help and resources

Scientific American - COVID Long haulers

Survey: A Picture of_ME - images of ME in the media

Shame and Medicine Project

Dear Doctor

The Times: Could This Scientist Have the Answer to Long Covid

Christmas post: List of resources

NICE Community Call Review

Activism works

Last chance to vote for ME/CFS research priorities

NICE guideline committee call

12 Days of Pacing

aime Seltzer's NPR interview

ME/CFS Priority Setting Partnership

Join the campaign to tell your doctor that GET is gone

Media coverage of new NICE guideline on ME/CFS

Send your thanks to the NICE committee members

Metro article by Jo Moss

The York Press article

Isle of Wight News article

Manchester World article

The Telegraph - Stop prescribing exercise to ME sufferers, doctors told

i news - Chronic fatigue syndrome: controversial exercise therapy removed from new treatment guidelines

BBC - Chronic fatigue syndrome advice scraps exercise therapy

The Guardian - ME Exercise Therapy scrapped

ABC News

Sign German Petition

Priority Setting Partnership top 10 research priorities

NICE's announce they will publish ME/CFS Guideline

Pharmaphorum's report on NICE

#MEAction UK report on NICE roundtable

NICE statement on roundtable meeting

The Times

LongCovid Physio letter to NICE

Letter from Dr Ben Marsh to RCPCH

Isle of Wight News - On the Wight

Seasick - play at the Belgrade Theatre

inews - Chronic fatigue syndrome: delay in publishing new ME treatment guidelines ‘puts more people at risk’

The Times - Delays to ME guidelines ‘are putting patients at risk’

An Update On The NICE Roundtable From #MEAction UK

Physios for ME heart rate monitor survey

NICE delays roundtable until October

Sign Our Petition: Publish the NICE ME/CFS Guideline Now.

Susanna Clarke Interview

Fleur Anderson MP asks question in Parliament about NICE guideline

126 Experts Sign Letter Urging NICE to Publish ME/CFS Guideline Without Delay

NICE announces roundtable

Can vested interests prevent publication of 'independent' NICE clinical guidelines?

What we're not being told about ME.

Woman's Hour (Dr Nina Muirhead & Dr David Strain)

Helen McDade speaks to Good Morning Scotland

BBC Radio Scotland - Good Morning Scotland

The Times interview with Jennie Jacques

The Press and Journal: Bleak Day for ME Patients

Sign Our Petition: Publish the NICE ME/CFS Guideline Now.

Daily Mail NICE Pause publication of ME/CFS Guideline

The Telegraph - #MEAction UK on NICE pause to ME/CFS Guideline

The Independent quotes #MEAction UK on NICE pausing ME/CFS Guideline

Fury as NICE cancels publication of finalised ME/CFS guideline

ME has left me bedbound for eight years

InvisibleME present Tissues. Water. Clock

Doctors believe ME article

Fiona Lowenstein article

JLA ME/CFS Priority Setting Partnership survey

ME Carer Call, 19th June, 2021

Scottish Legal News - David J Black

Q&A with Cort Johnson of Health Rising

Living with complex, poorly-understood medical conditions: Experiences of stigma and shame - Survey

Sign up to the #MEAction Chronic Illness Survey

#MEAction Gatheround event

MEAction UK Blue Sunday donation link

Blue Sunday 2021

Chat with the #MEAction UK volunteers

Speaking from the heart with Janet Dafoe, Linda Neale and Stuart Murdoch - video

What is DecodeME? What will it do and how can you take part? - video

Medical Education with Dr Nina Muirhead and midwife Hayley Valentine-Howard - video

Behind the scenes at the ME/CFS Priority Setting Partnership - video

How to turn your MP into an ally - video

Award winning authors talk to #MEAction​ UK about living and writing with ME - video

Cutting edge ME researchers share their research with the #MillionsMissing​ - video

Behind the scenes with #MillionsMissing UK organisers - video

Millions Missing 2021 webpage

#MEAction Window Decoration ideas

Window Wanderland shop

Window Wanderland website

#MillionsMissing 2021 - Get involved

Continuing pressure on NHS to vaccinate people with ME in light of survey results

Covid-19 has worsened our ME, report survey respondents

Register your local Millions Missing event

UK ME/CFS Priority Setting Partnership launches first survey

George Monbiot Opinion Column in The Guardian

A Letter from Jennifer Brea: Meet Our New Executive Director!

M.E and Me website

Leeds campaigner, 24, launches website to fight for the plight of those with ME

Contact your MP

#MillionsMissing t-shirts

Jessica Taylor-Bearman Book Giveaway

The impact of Covid-19 on ME

Workwell Foundation Article in JOSPT

CPD Module on ME for GPs

GET is not safe for ME or Long Covid - #MEAction UK article

When rest may be best for post-viral fatigue - Guardian letters

Long Covid isn’t as unique as we thought - VOX Article

ME Partners Caregivers Support Group

DHSC Women's Health Survey

#MEAction Letter to NHS England and Matt Hancock MP - Vaccine

Waiting for Superman - Review & Giveaway

Find Your MP

Why this Leeds #MEAction campaigner has written to Chris Whitty over vaccine priority list - Yorkshire Post

Petition - ME/CFS Group 6 Covid-19 Vaccine

Charities urge clarity over who qualifies for next UK vaccine wave - The Guardian

UK COVID-19 Vaccine Priority and Template Letters

APPGs Should Collaborate On ME And Long Covid

Open Letter - UK Gov Should Add ME To Vaccine Priority List

Health Rising Vaccine Poll

The Science Bit - Prof. Brian Hughes

UK Disability Survey - Deadline 13th Feb

Women's Health - Long Covid

How to Report with Accuracy and Sensitivity on Contested Illnesses

Modern Love Podcast - Love Means Never Having to Say...Anything

Enrolling: International ME/CFS Family Impact Study

ME Expert Recommendations - COVID-19 Vaccinations

The Guardian - Long Covid and ME/CFS

UK press team hits again with Mail Online article

Moving short film “This is ME” nominated for award – you can help it win!

#MEAction UK Response to Draft NICE Guideline on ME/CFS

Support and Crisis Resources

NICE Draft Guideline on ME/CFS

New Graded Exercise Warning On Current ME/CFS Guideline

The Guardian - ME Campaigners respond to Long Covid Guidance

Help Holger Now Petition

Upcoming Events

#MEAction UK responds to The Observer

#MEAction Zazzle Store

Your Covid Questions Answered - The Guardian

Stop. Rest. Pace.

Long Covid: Overlap Emerges With ME - The Guardian

Community Discussions - NICE Draft Guideline

Important News From Jennifer Brea

#MEAction UK Press - Scottish Sunday Express

I Got A Virus (2020)

Meet The Volunteers

Pacing and Activity Management Guide for ME/CFS

Sian: Stop. Rest. Pace.