News

The world’s ME news, all in one place. Check out the headlines from organisations working to benefit people with ME all across the world.

Tell HHS about your experience of healthcare discrimination

People with ME, Long COVID and other complex, chronic diseases have experienced all kinds of healthcare discrimination. Now there is an opportunity for you to share your story and urge…

Charter for unpaid carers (Wales)

Welsh Government Charter for unpaid Carers This Charter for Unpaid Carers sets out the legal rights of unpaid carers in Wales under the Social Services and Well-being (Wales) Act 2014.…

ME Support (IOM) joins the World ME Alliance

ME Support (IOM) joins the World ME Alliance

Sometimes being in a small place can enable a level of advocacy and engagement in political landscapes that is harder in large countries. This is absolutely the case for the…

How Dept. of Labor can better track disability from chronic illness

Earlier this month #MEAction collaborated with Patient-Led Research Collaborative (PLRC) to suggest changes that the U.S. Department of Labor (DOL) should make in order to better track disability due to…

Social Prescribing – Welsh Government consultation

What is a suitable model for social prescribing in Wales?   The Welsh Government want to develop a national framework for social prescribing and is asking Welsh residents to comment.…

Facets of ME: Travel Tips

Facets of ME: Travel Tips

Welcome to August’s Facets of ME! If you are unfamiliar, #FacetsOfME is a new #MEAction feature this year where we take time to explore one facet or aspect of myalgic…

IACFSME conference videos & reports 2022

IACFS/ME’s 15th Medical/ Scientific Conference 27-30 July 2022   If you missed out on this large conference organised by the The International Association for CFS/ME (IACFS/ME) you can now watch…

ME/CVS Stichting Nederland joins the World ME Alliance

ME/CVS Stichting Nederland joins the World ME Alliance

This month, ME/CVS Stichting Nederland joined the World ME Alliance as a member. This Dutch organisation has been advocating for people with ME since 1987, and has a variety of…

Solve M.E. Advises and Reacts to Administration Reports on Long Covid

In April, President Biden issued a Presidential Memorandum directing the Secretary of Health and Human Services (HHS) to coordinate a new effort across the federal government to develop and issue……

The Summer 2022 Edition of The Chronicle is Available Online Now!

The electronic version of our flagship research and advocacy journal, The Chronicle, has arrived! It includes a celebration of our Long Haul Voices: Living with Long Covid and ME/CFS video……

The DHSC have released details of their process in the Development of a Delivery Plan on ME

On the 12 May, World ME Day, the former Secretary of State for Health and Social Care, Sajid Javid, announced the Government’s intention to develop a cross-Government Delivery Plan on…

Delivery Plan on ME/CFS for England

DHSC Delivery Plan on ME/CFS development strategy   The Department for Health & Social Care (DHSC) in England has laid out the way they intend to develop the “cross-Government Delivery…

Hear about research, services and future plans at our online AGM – Action for M.E.

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…

Consultation on Media Guidelines for M.E.

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. The purpose of this…

Guest Blog: That Thing Called Pacing, by Ingebjørg Midsem Dahl

Ingebjørg Midsem Dahl was born in 1979 in Oslo, Norway, where she still lives. She came down with ME acutely in 1983. Ingebjørg has done written information work for major……

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

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… This post appeared…

Millions Missing Canada joins the World ME Alliance

Millions Missing Canada joins the World ME Alliance

We are proud to announce that Millions Missing Canada is joining our Alliance. This organisation was born out of the Millions Missing movement founded and run by #MEAction. It was…

Creatieve Infomarkt op 11 September

Creatieve Infomarkt op 11 September

Creatieve infomarkt te Gent (11/09/2022) Graag nodigen we jullie op zondag 11 september uit op een creatief en informatief minimarktje van 12ME. Van 11.00 tot 17.00 uur vind je ons aan…

Powys Health Board defends their ME/CFS services

Powys Health Board [in Wales] say they are committed to using NICE guidance. WAMES has been asking Health Boards in Wales what plans they have to implement the new NICE…

First You + ME Registry Publication Is Available Online Now!

It’s been more than two years since we launched the You + ME Registry and we’re thrilled to have over 6,500 people contributing data to the community. We also have……

Solve M.E. Spearheads the First Nationwide Long Covid PSA campaign

Solve M.E. Spearheads the First Nationwide Long Covid PSA campaign

We are excited to announce a new program being introduced by Solve M.E. and invite our community play an important part in its roll out. Solve M.E. is on the…

BEIS UK provide further support for households this Winter

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…

Severe ME Artist Project 2022 — Gallery

Severe ME Artist Project 2022 — Gallery

A collection of works by artists with severe ME. #MEAction is excited to announce our Severe ME Artist Project 2022— Gallery! The Severe ME Artist Project 2022 features work from…

CureME’s Caroline Kingdon on Representing People with Severe ME in Research

Caroline Kingdon, RN, MSc, is a research nurse for CureME, an organization at the forefront of participatory epidemiological, clinical and laboratory research into ME/CFS in the UK. She is also……

ME Genetics Research Symposium

Registration is now open. Earlier this month we shared an exciting save the date. We now have the date of Wednesday 14th September for our ME Genetics Research Symposium. It…

Join Us This August 8th to Honor Individuals with Severe ME/CFS

Each year on August 8, Severe M.E. Day, we reflect on the tremendous toll this devastating disease takes on individuals suffering from severe ME/CFS symptoms and remember the lives of……

Severe ME Day – August 8th 2022

Severe ME Day – August 8th 2022

Severe ME Day takes place every year on August 8th. It is considered a day for remembrance of those who suffer from and have died from severe myalgic encephalomyelitis (ME),…

Just In Time for the School Year: A New Pediatric Pacing Guide

#MEAction is excited to share a new and much-needed resource just in time for back to school! We are so thankful to have our allies at Long Covid Families join…

ANZMES backs World ME Alliance position

– no endorsement for Lightning Process for ME The Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) supports the new position paper on the Lightning Process by the World ME Alliance…

We “do not endorse the Lightning Process” say World ME Alliance members

We “do not endorse the Lightning Process” say World ME Alliance members

The World ME Alliance and its members have worked closely over the past few months to reach a collective position on the Lightning Process.  The Lightning Process is a commercial…

Report says neuro services are at crisis point in Wales

Report says neuro services are at crisis point in Wales

My Neuro survey Wales report 2022 from the WNA   Whilst we are cognisant that the pandemic has brought with it unprecedented demand on all health and social services, two…

Solve M.E. Welcomes Chief Operating Officer TaKeisha S. Walker

Solve M.E. is pleased to announce that TaKeisha S. Walker recently joined us as chief operating officer. In this newly-created role reporting to CEO Oved Amitay, TaKeisha will lead Solve’s…

An update on the Scottish implementation of the NICE guideline

An update on the Scottish implementation of the NICE guideline

As we announced in February, the Scottish Government has committed to implementing the new NICE guideline for diagnosis and management of ME. The first step in the process was a…

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

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

Solve M.E. Board Member Testifies at Congressional Hearing

Solve M.E. Board Member Testifies at Congressional Hearing

House Holds Hearing on “Understanding and Addressing Long Covid”  This week, the Select Subcommittee on the Coronavirus Crisis held a hearing on understanding and addressing Long Covid and its consequences.…

Dept. of Labor hosts dialogue on Long COVID in the workplace

Dept. of Labor hosts dialogue on Long COVID in the workplace

The U.S. Department of Labor (DOL) has opened a national online dialogue on “Understanding and Addressing the Workplace Challenges Related to Long COVID.” The online dialogue is a text-based forum…

Bestel je eigen 12ME T-shirt

Bestel je eigen 12ME T-shirt

Bestel je eigen 12ME T-shirt. We zijn bijzonder trots om onze eigen 12ME T-shirts voor te stellen!Het shirt is koningsblauw met ons logo groot in het midden bedrukt. De maten…

#DisabilityPrideMonth: Listen to The Century Foundation’s podcast Off-Kilter

As part of #DisabilityPrideMonth, The Century Foundation’s podcast Off-Kilter has been hosting a series of conversations featuring Disability Economic Justice Collaborative* members and other leaders from the disability community. #MEAction…