32 organisations call for future pandemic preparedness to address infection-associated chronic conditions 


The World ME Alliance says future pandemic preparedness will fail millions without explicit recognition of and research into infection associate chronic conditions.

On 20th September 2023, the United Nations General Assembly adopted a Political Declaration on Pandemic Prevention, Preparedness and Response.

The commitments outlined in this declaration are vital for enhancing global readiness to tackle future pandemics effectively, yet they fail to address infection-associated chronic conditions.

Globally, more than 65 million people are now living with long COVID, of whom 50% meet the criteria for a diagnosis of ME/CFS and over 70% have developed dysautonomia. The need for recognition and expedited research to address these chronic illnesses is undeniable.

Facilitated by the World ME Alliance, 32 organizations, including WAMES, have joined in calling on His Excellency Mr Dennis Francis, President of the 78th UN General Assembly, to raise awareness of this critical issue within the UN and among member states, and meet with us to discuss working toward a healthier and more resilient world for all.

Extract from letter:

… historical records show that after previous pandemics and epidemics, from the Greek plague of 430 BC to the Spanish Flu of 1918 to the 2014 Ebola virus disease outbreak, there have been accounts of individuals who never fully recover, living with chronic illnesses that often mirror the symptoms of ME and dysautonomia. This pattern underscores the importance of recognizing infection-associated chronic illnesses as a recurring issue following pandemics, with long-lasting implications for affected individuals and society as a whole.

Therefore, we respectfully urge the United Nations and its member states to consider addressing this significant gap in pandemic preparedness and response. We call for future initiatives and strategies related to pandemic preparedness to explicitly include actions on the impact of infection-associated chronic illnesses, such as long COVID, ME, POTS and other forms of dysautonomia and more.

Vitally, these efforts should encompass research and recognition, with immediate recommendations to invest in research to understand the underlying mechanisms of these conditions, facilitate early diagnosis, and improve recognition, medical education and treatment.

We kindly request your support in raising awareness of this matter within the United Nations and among member states. We, the undersigned, are committed to providing aid and being a resource for the UN and member states in this endeavour. Together, we can work towards a more inclusive and responsive approach to pandemic preparedness that considers the long-term health and well-being of all individuals affected by infectious diseases.

32 organisations signed:

World ME Alliance – Global
Long Covid Alliance – Global
Dysautonomia International – Global
#MEAction – Global
12ME – Belgium
ACAF – Spain
Action for M.E. – UK
AMMES – The American ME and CFS Society
ANZMES – The Associated New Zealand Myalgic Encephalomyelitis Society
Associazione Italiana Long COVID – Italy
AQEM – Association québécoise de l’encéphalomyélite myalgique – Canada
CFS/ME Associazione Italiana – Italy
CFS/ME Organizzazione di Volontariato – Italy
European ME Coalition
Emerge Australia
Forward ME – UK
Hope 4 ME and Fibro Northern Ireland
Japan ME Association
ME CVS Nederland
ME Support (IOM) – Isle of Man
ME/CFS Israel
Millions Missing Belgique
Millions Missing Canada
Millions Missing France
Millions Missing Mexico
Mirame Arts – Germany
MYOS – Portugal
Neúnavní – Czechia
Plataforma Familiars FM-SFC-SQM Síndromes de Sensibilització Central – Spain
Solve M.E. – US
The ME CFS Foundation South Africa
WAMES – Welsh Association of ME & CFS Support

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