It is fitting that on International ME Awareness Day 2018 that The International Alliance for ME, has written to the World Health Organisation’s Director-General in Geneva seeking a meeting to discuss the international response to the illness. The letter has the support of organisations (such as Forward-ME) and charities (including ME Research UK) from countries in the US, Australia, Spain, Japan, South Africa, as well as the UK.
As the letter highlights – “M.E. (Myalgic Encephalomyelitis) is a complex, disabling, chronic, fluctuating, neurological condition of unknown aetiology. It is sometimes diagnosed as Chronic Fatigue Syndrome or CFS/M.E. It is a disease which affects 20,000,000 individuals of all ages and from all ethnic groups – and the families around them – causing significant personal, social and economic hardship.”
Specifically highlighting research, the International Alliance draws the Director-General’s attention to the fact that ” … only 0.02% of international mainstream research funding has been directed towards M.E. Moreover, the condition is frequently undiagnosed, misdiagnosed and/or mistreated by physicians and often not recognised by national treatment and health insurance systems” and the letter seeks ” …. 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.”
The full text of the letter is now available – IAME letter to WHO