World Health Day
UK charity Invest in ME Research is one of the founder members of the European ME Alliance (EMEA) - a grouping of European patient organisations and charities who are supporting patients suffering from myalgic encephalomyelitis (ME, or sometimes referred to as ME/CFS) and are the Voice for ME in Europe - campaigning for funding for biomedical research to provide treatments and cures for this disease.
For World Health Day 2024 the long-awaited findings of the European ME Alliance Pan-European ME Patient Survey were finally unveiled, painting a distressing picture of neglect and suffering endured by millions across Europe. The survey report ''EMEA survey of ME/CFS patients in Europe: Same disease, different approaches and experiences' lays bare the systemic failures and institutional neglect that have perpetuated the suffering for far too long.
The survey findings alert all stakeholders?of the urgent need for concerted action to address the crisis facing people with ME and their families.
Some key messages from EMEA Pan-European ME patient survey are available on this page using the side button, displayed also below -
The survey findings are a shocking Indictment of European Research and Healthcare Policies for ME.
On World Health Day in Europe there are often clichéd hashtags banded around - all well-meaning, but actual European policies do not always live up to these ideals - certainly not for people with myalgic encephalomyelitis
Indeed.
In theory, people with ME may have #MyHealthMyRight - but the reality is that they do not experience #HealthForAll
The survey reveals that long delays in ME diagnosis from disease onset are common, averaging ??.?? ?????????? across Europe and with large variations across countries.
The survey strongly refutes the Biopsychosocial (BPS) model, labelling it as a failed and harmful approach to people with ME - something patients have been stating for decades.
Dr Paul Cheney made this famous quote as far back as 2010 at our #IIMEC5 International ME Conference in London -
Now healthcare agencies need to begin to listen to patients.
The health care systems in Europe fail ME patients – and that has serious consequences.
The European ME Alliance Pan-European ME Patient Survey findings are an indictment of the status quo.
Yet, by shining a spotlight on these issues the European ME Alliance and its members (including Invest in ME Research) seek to catalyse meaningful dialogue and concrete steps towards redressing injustices faced by people with ME.
An easy to read info sheet available here -
13th Biomedical Research into ME Colloquium Reminder
A reminder to researchers from recognised research and academic institutes of the two-day closed researchers' colloquium at the Wellcome Genome Campus between London and Cambridge, on 226 - 27 June 2024.
The theme - The Infectious Aetiology of Myalgic Encephalomyelitis
Acknowledging the acceptance by both clinicians and researchers of 'THE INFECTIOUS AETIOLOGY’ of ME/CFS' the event focuses on uncovering the complexities of ME, exploring acute infection, chronic infection, and co-infection.
领英推荐
#BRMEC13 will cover various aspects of ME research, facilitating in-depth discussions on Chronic Infection, Nervous System and Neuroinflammation, Immune System, Metabolism, Epigenomes and Transcriptomes, Physiology, and Other Non-Infectious Trauma, led by experts from the European ME Research Group.
Following the completion of the National Institutes of Health Roadmap for ME, and combined with the following IIMEC16 Clinicians' Conference, we seek to focus on answering the pivotal question, "What's Next?" for ME research.
International ME Conference Week 2024
The Colloquium is one of a number of events in International ME Conference Week 2024 - arranged for 25 - 28 June 2024.
A handy brochure highlighting the conference week events this year
A reminder that registration is open for the 16th International ME Conference - #IIMEC16 Advancing Understanding of ME: Bridging Research and Clinical Treatment
Mike Harley - EU Marathons for ME
Mike Harley has raised enormous awareness and valuable funds for research at the centre of excellence for ME in Norwich Research Park over the last years - running 27 EU marathons, and then continuing this amazing venture with additional marathons - supporting Invest in ME Research.
Almost 9000 miles later Mike visits Serbia this month to run in the Belgrade marathon. Mike always takes the opportunity to discuss how ME is treated in each country that he visits - here Milan offers a view of life in Serbia - https://www.mikeseumarathons.eu/serbia.html
We invite support for Mike's efforts and help him take the total donations he has raised to over ￡50,000. Mike's JustGiving page is here - https://www.justgiving.com/fundraising/mikeseumarathons
The ONLY Clinical trial for ME in UK
The RESTORE-ME clinical trial begins this year at the Quadram Institute in Norwich Research Park. Funded by Invest in ME Research (with a wonderful donation and support from The Hendrie Foundation) this clinical trial offers hope to understand ME and possibly offer a therapy for a subset of patients. At the same time the charity is working with Quadram Institute to bring in other research to complement the trial and build more collaboration across Europe.
The two new fellowships funded by Invest in ME Research (with the wonderful donation of LunaNova) are also beginning - more details on the Quadram site -