International Alliance for M.E.
The International Alliance for M.E. (IAFME), based in Geneva, is a collaboration between M.E. organisations across the world, chaired by Action for M.E. CEO, Sonya Chowdhury. The IAFME is open to any M.E. organisations that want to join this collaborative effort. Through a coordinated, inclusive and worldwide advocacy movement, we aim to encourage a coordinated and appropriate public health response to M.E. from the World Health Organization (WHO) and its Member States.
The M.E. organisations that are part of IAFME are working to build a global framework for M.E. that lays the foundation for national policy changes that will improve the lives of people with M.E. By coming together in this way, the IAFME can act as a formal consultation channel with the WHO and its Member States.
The first step towards this goal was the creation of a trans-national consensus document, Recognition, research and respect: An agenda for change in M.E, published in December 2018 with support from over 60 clinicians, researchers and non-governmental organisations from 28 different countries.
In particular, we want the WHO and its Member States, through the adoption of a resolution at the World Health Assembly (the WHO’s supreme decision-making body), to:
- recognise M.E. as a “serious, chronic, complex, and multisystem disease that frequently and dramatically limits the activities of affected patients” (Institute of Medicine, 2015) and adopt measures to provide a global and co-ordinated public health response to it.
- put a transparent consultation process in place with M.E. organisations and patients on decisions related to M.E.
- support accelerated biomedical research to develop better diagnostic methods and treatments for M.E.
- ensure appropriate medical education for professionals working with M.E. patients.
Current IAFME members are:
- ACAF Associació Catalana d'Afectades i Afectats de Fibromiàlgia i d'altres Síndromes de Sensibilització Central, Spain
- Action for M.E., United Kingdom
- The American ME and CFS Society, United States
- Associated New Zealand ME Society, New Zealand
- Emerge Australia, Australia
- Forward M.E., United Kingdom
- ME CFS Foundation South Africa, South Africa
- Plataforma Familiars Fm-SFC-SQM, Spain
- Welsh Association of ME & CFS Support, United Kingdom
Statement on long COVID and M.E./CFS
December 2020. You can also download this statement as a PDF.
SARS-CoV-2 (COVID-19) continues to affect millions of people globally. While some people recover, other people have a delayed recovery and across the world we are now seeing the emergence of a significant group of people who are struggling with a wide spectrum of symptoms similar to M.E./CFS, many weeks or months after their initial Covid infection.
From our experience we know that, like M.E./CFS, Long Covid is both a real and highly disabling condition. There are, of course, many differences in our experience of Long Covid and its relationship to ME/CFS but we have come together as an alliance to share the similarities in our experience in the hope of better outcomes for patients, and their families, experiencing both Long Covid and M.E./CFS.
Stop, rest, pace
We counsel individual patients, medical providers and people operating at all political levels associated with health to advise patients to stop, rest and pace. Patient organisations working in M.E./CFS will often have tools or services to assist with this. We encourage medical professionals and Long Covid patients to contact M.E./CFS organisations in their own country to share appropriate resources and assistance available.
Better outcomes by far are found from advising patients not to push and, as with M.E./CFS, not to focus on exercise. Patient health and quality of life is maximised by advocating for and advising that they rest, manage their activities and that their symptoms are treated appropriately.
Opportunity for research
The sudden, dramatic rise of Covid-19 provides a real opportunity for much-needed research into post-viral conditions – research which will help both people with Long Covid and people with diseases such as M.E./CFS. We urge Governments and philanthropists to seize this opportunity to understand what is delaying (or preventing) recovery and - crucially - what restores health to those patients who recover.
We will continue to work collaboratively to ensure that this opportunity is not lost. The neglect of people with M.E./CFS must stop. We hope that some good may come from the pain and suffering caused by this pandemic in that it may finally help us to see the investment in research, treatments and care that every single adult and child with M.E./CFS and their families deserves.
Older events and activities
In 2018, the IAFME held the first ever side event on M.E. at the World Health Assembly, to highlight the impact of M.E., with a short screening from award-winning M.E. documentary, Unrest, followed by a panel discussion. We also staged a Millions Missing protest at the Place des Nations - you can see images and updates from this on IAME Facebook and Twitter.
In our letter to Director General of the World Health Organisation, Dr Tedros Adhanom Ghebreyesus, sent on the eve of M.E. Awareness Day 2018, the IAFME set out its intention to "highlight the serious and significant impact of this often unrecognised condition, and explain why we are seeking urgent national and international action to increase research on the condition and ease the suffering of patients around the world."
In 2019, an event was held with the French UN Missions to brief the representatives of the country on M.E. and consider ways to raise the profile of M.E. on the WHO agenda; and a webinar was hosted by former IAFME member, ActionCIND on Thursday 24 January. We discussed the vision of the organisation along with the membership and current activities with people who dialled in around the world. The IAFME also held a discussion with the European Federation of Neurological Associations to assess potential joint advocacy actions.