My name is Brooke and I am a US Citizen who was studying at the London School of Economics in when I came down with a mysterious illness in late 2016. I had been ill for 15 years prior to this, but something changed dramatically during this period and I was unable to read, talk, or even use the apps on my phone to get a taxi. I was afraid that I would die either from not eating or from getting hit by a car when trying to cross the street on the way to my doctor.
When I finally did see a practitioner at the NHS, my doctor was dismissive and said it was not worth seeing a specialist or running more than a handful of tests. He said I was unlikely to get an accurate diagnosis from anyone and “with things like this” I may not ever recover.
Inspired by Jen Brea’s TED talk, I started researching on my own. First looking for “diseases commonly misdiagnosed as CFS” and “diseases commonly misdiagnosed as mono” before eventually accepting that I truly did have ME. Over the past year, I recovered from a 3 on the disability scale physically and a 1 mentally to between a 5 and an 8 depending on the day. This was made possible by following the protocol of Dr. Myhill whose book I found while wading through ME/CFS books and research last summer. At first I was only able to read a paragraph each day, but forcing myself to get through it was worth the struggle. I credit her treatment plan with the majority of my recovery.
I started this blog to collect my thoughts, experiences, and the wealth of information I have learned over the past year. So much has changed in the past year and I feel like I need to write it down or I will forget that it happened. It’s therapeutic to share my story and also to connect with other patients. Also, I live in fear every day that this disease will once again take my voice. I know that I must use it while I still can.