The World ME Alliance is thrilled to welcome our newest member organization, Aliança Millions Missing, a collective of Portuguese speaking advocates dedicated to raising awareness about Myalgic Encephalomyelitis (ME) and campaigning for those affected by this debilitating illness. This addition marks a significant milestone as we expand our global reach into South America as well as Portugal, uniting efforts across borders to champion the cause of ME patients worldwide.
Aliança Millions Missing is part of an international movement committed to disseminating scientifically-based knowledge about ME, advocating for evidence-based practices and policies to ensure dignified lives for ME patients, and promoting collective actions for those affected by ME. As a collective of Portuguese-speaking patients, they have been instrumental in driving awareness and support for ME in Portugal and Brazil, bringing greater attention to ME, and aim to reach out further into other Portuguese speaking nations and communities.
Sian Leary, Head of Advocacy and Communications at the World ME Alliance, expressed her enthusiasm about the new partnership:
“We are delighted to welcome Aliança Millions Missing to the World ME Alliance, as our first member organisation linking efforts across continents. Their dedication to promoting awareness and advocating for ME patients in Portuguese-speaking communities aligns perfectly with our mission. This partnership strengthens our global network, showcasing the power of coming together across borders to support those affected by ME.”
Aliança Millions Missing has been proactive in their advocacy efforts, notably instigating the 1st International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID in Portugal, which took place in April this year (2024). This event brought together experts and stakeholders to discuss the latest scientific and clinical advancements in ME/CFS and the overlaps with Long COVID, highlighting the critical need for continued research and support. They are also participating in the first epidemiological study of Long Covid in Portugal, launched in May of this year (2024).
Joan Serra Hoffman, co-founder of Aliança Millions Missing, shared their perspective on joining the World ME Alliance:
“Joining the World ME Alliance is a significant step for us. It amplifies our voice and enhances our ability to advocate for ME patients in Portugal, joining forces with Brazil, and beyond. We believe that by working together on a global scale, we can achieve greater recognition, better care, and ultimately, a cure for ME.”
The prevalence of ME is staggering, with pre-pandemic estimates suggesting it affects between 400 to 2,500 individuals per 100,000 adults globally. Despite these numbers, there are no prevalence statistics available for Portugal and Brazil. The similarities between ME/CFS and Long COVID have been recognized in numerous scientific studies, with estimates suggesting that approximately half of Long COVID sufferers meet the diagnostic criteria for ME/CFS. Yet, there remains a lack of data on how many Long COVID patients in Portugal and Brazil meet these criteria.
By welcoming Aliança Millions Missing into our network, we are not only expanding our geographical footprint but also strengthening our collective resolve to support ME patients through shared knowledge, advocacy, and solidarity.
Together, we continue our journey towards a world where ME is understood, and patients receive the care and support they need.
For more information about Aliança Millions Missing and their initiatives, visit their Facebook page.
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We continue to look for more national ME organisations to join the World ME Alliance – if you are interested in finding out more look here.
