Jen Brea sums up how we all have been feeling in the most elegant way possible. Crawley never responds directly to criticisms of her work or ideas. She paints herself as the victim because people have dared to question her. Brea says simply, “This is the internet.” We all have been harassed, yet we don’t use that as an excuse not to defend our ideas or engage with the other side. Professor Crawley paints herself as being silenced, yet is interviewed in almost every single article about ME. It’s long past time that ME patients have the opportunity to share our stories. Thanks Jen Brea for helping elevate our voices.
Dear Jeremy Hunt,
On the heels of Unrest, an Oscar-nominated documentary about ME/CFS being shown in Parliament, the removal of outdated treatment advice from the CDC website, and the reopening of NICE guidelines for review, I am writing to request your support for the MAIMES Campaign led by Dr. Sarah Myhill. MAIMES stands for Medical Abuse Against ME Sufferers and was inspired due to the lack of care available on the NHS for ME patients. This is medical abuse against the patients and also medical abuse against the doctors who do not have the adequate training to carry out their hippocratic oath to do no harm. Continue reading “Open Letter Urging Investigation of Medical Abuse”
In general, I don’t, but this is something I would like to change. There is a huge stigma against people with this disease. I have lost friendships and experienced weakening of my family ties as a result. When I was at my sickest, all of the people close to me pulled away at the same time that I most needed their support. People who I considered my closest friends would say, “don’t you have anyone else you can lean on for support?” Continue reading “How do I tell my friends/family I have ME?”
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.