A WORLD WITHOUT ME

IAFME International Alliance for Myalgic Encephalomyelitis

WHAT WE ASK FOR

The IAFME calls upon WHO and its Member States to:

  • Formally engage with the IAFME and its members at the national level in order to address ME patients' barriers.
  • Produce a report that identifies current biomedical knowledge about ME and barriers to progress of recognition, research, clinical care, and support. Adopt measures to address these barriers, providing a global and coordinated public health response to ME. Encourage the use of definitions that require hallmark symptoms of ME to increase the quality of biomedical research and expedite the process.
  • Continue to ensure that the disease not be moved out of the neurological chapter of the ICD-11 until further research provides the scientific basis for that change.

TESTIMONIALS

"I ask on behalf of myself and all other people with ME/CFS please wake up! We are here and we want to live our best lives possible. Stop judging these books by their covers and start listening to the words inside." 

Enid Versfeld, South Africa.

"Even as I grew up sick I used to be a singer, student, dancer, teacher, traveler. Both the little girl in me and the now grown woman in me cry. "We want our life back" both little Nevra and adult Nevra have missed out on so much. Please don't let #ME steal anything more from me." 

Nevra Elis Ahmed, Pakistan.

"Save your pity and fund research! We need a cure." 

Erica Verrillo, United States.

"More than anything what I miss is being able to just be a properly functioning mum for my little boy. The thought of him missing out on experiences because of me being sick & of me missing out on parts of his childhood absolutely breaks my heart, I can barely think about it, It hurts so much. I miss my life." 

Annie, Australia.

"I wish to live my life in hope." 

ME Patient, Japan.

"I am a surgeon with over a decade of experience in skin cancer surgery, before I developed ME/CFS I performed over 1,000 operations per year, I want to be better so I can use my skills again to help save lives."

Nina Muirhead, United Kingdom.