Hello, I’m Nevra Elis Ahmed. I’m currently working as a volunteer project manager, translator and regional representative for Pakistan. I’ve been suffering with ME/CFS since I was 6 and I am 22 now. I could only get diagnosed last year.
In the past, I have hosted and organised two screenings of Unrest to get the dialogue started with regards to ME/CFS in Pakistan. We had a wonderful response and gained allies within the media. Watch videos from the events below.
Now I need help with launching our foundation’s Facebook page as well as revising our mission statement for our foundation. ME/CFS has stolen much from me and getting diagnosed quite late was a huge factor in my worsening. I could never continue my education or make it to university. I do not want it to steal more lives so I will be launching the “Neglected Chronic Illnesses Foundation” in Pakistan, which will focus on ME/CFS, MS, Lupus, Endometriois, Orthostatic Intolerance, and Polycystic Ovarian Syndrome.
We will provide patient care, resources and support as well as spread awareness for these diseases and set up collaborative projects between international and regional researchers so when the cure is found it doesn’t take ten years for it to reach Pakistan. Our headquarters will be in Pakistan but we will eventually branch out to other Asian and Middle Eastern countries.
I’d love to get more help on this project especially if you have any experience with social media projects or setting up a page.
Also, please connect to our #MEAction Pakistan Facebook Group.
Unrest Screenings in Karachi:
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the