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2) He writes: "I’m not a patient advocate. I’m not an activist. I’m just a patient that shares out of sheer desperation as much about my disease, or rather the whole shit show circus surrounding it, so I can hopefully, one day, return to a more normal life."

3) "While raising awareness for ME also keeps me busy, I do not enjoy doing it. I don’t enjoy having to constantly write about it, debunking shoddy science or create awareness art about this disease, so that people get what ME is about."

4) "It’s not a job. It’s not a calling. It’s not fun. It’s not something I’m proud of. It’s not part of satisfying some silver lining porn. It’s born out of losses, pain and suffocating necessity because at some point I would like to get better."

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5) "...I of course appreciate that people like things that I do, but realize I fucking hate having to do this. It’s not an enjoyable achievement for me. It’s demoralizing and exhausting."

6) "I have better things to do in my life. I have a job and I would like to get back to it or start a new career. Not this shit. I’m really not interested in compliments. I need you to fight with me or for me. For us! We and I need your help moving things forward."

7) My personal comments: I think many other patients feel the same way as Anil. A lot is happening in ME/CFS research and advocacy but too much rests on the shoulders of a couple of individuals who give everything they've got. We need more people to step up and take action.