Agy Lena 🏳️‍🌈 Profile picture
Ex athlete, biker, climber, 1st class biomedicine graduate. Entire life lost to post viral ME/CFS. Now also injured by the most unsafe 💉in history.
May 2 9 tweets 3 min read
Many people asking why I got coerced into having this dart (thus now injured). I have an existing condition induced by a virus called #MECFS . It’s identical to #longcovid . Contrary to popular belief, these strike young, fit, healthy people. Like I was when I got a virus ⬇️ There were already millions of people like me prior to the pandemic but we were dismissed and gaslighted. Long covid isn’t new. Virus induced disability/ chronic illness has been documented for decades but patients were told they’re maligners and no biomedical research was done⬇️
May 1 8 tweets 2 min read
I have nothing to inspire people with.
No one sends me rivers of congratulations for achieving or overcoming something.

I haven’t “beaten” a disease, because not all diseases can be beaten ESPECIALLY when there isn’t a single treatment. ⬇️ I haven’t walked a marathon or climbed a mountain or even completed a degree or something “in spite of” my disease because some diseases do stop you and no amount of willpower and determination can change that, no matter what vast majority of humanity in denial want to believe⬇️
Aug 18, 2021 10 tweets 6 min read
1. A super brief crash course for healthy people wondering what’s going on. HEALTHY FOLKS PLEASE SHARE THIS WIDELY AT THE VERY LEAST AS A PRESENT FOR MY UPCOMING BDAY!! THIS IS THE GREATEST MEDICAL SCANDAL OF OUR TIMES!!! THE WORLD NEEDS TO KNOW THIS!!! ⬇️ 2. Many years ago, very powerful doctors (mainly psychiatrists) with vested interests made it their job to make ME/CFS a psychosomatic illness. To do that they produced a fraudulent study called PACE.
Jan 15, 2021 6 tweets 2 min read
There is only so much politeness one can dish out when SOME (not all!) involved with long covid relegate us to the gutter. We didn’t start this hostility. We asked to be listened to. We were treated like we don’t matter. Personally, I’ve run out of patience to ask nicely Repeatedly, certain individuals have treated our disease with contempt. At the same time putting long covid on the pedestal. Long covid patients need help but us? Never mind, you can continue to rot in hell for all eternity. Your illness doesn’t warrant validity or research
Jan 14, 2021 7 tweets 3 min read
I have just learnt that a long covid group in the UK including drs have said publicly that this is not “just” post viral MECFS. There is a real pathology to be explored. How fucking dare they! I am furious! Who are they and has anyone challenged them? I am beyond insulted!!! I am really sick to the back of my teeth of people distancing themselves from MECFS. If you don’t have organ damage and you experience PEM, you have ME just like everybody else who got it from varying infections!!!! It’s ignorant, arrogant and damn right nasty to claim otherwise
Jan 13, 2021 13 tweets 6 min read
@mrdiscopop I appreciate some of your unbiased BBC articles about #MichaelJackson but it would be great if you could report on the fallacy that he paid the first accuser off. This is not what actually happened. #mjinnocent #squareone ⬇️ So much of what people wrongly believe about Michael Jackson is based on the lie that he paid them to keep them quiet. Most people do not have the decency to check basic facts. Firstly, if he wanted their silence, he would pay before it got to court. ⬇️
Jul 10, 2020 7 tweets 5 min read
1. People with #LongCovid : the reason medicine has nothing to offer you right now and your life is hanging in the balance with zero prognosis is because post viral diseases such as ME/CFS have been ignored, stigmatised and ridiculed as psychosomatic for decades. 2. There has been virtually no biomedical research funding in all this time as we were told it’s in our heads and sent to do CBT to cure our “false illness beliefs” and Graded Exercise Therapy to cure our fear of exercise (erm..yep... except many of us were athletes before M.E.)
Apr 19, 2020 14 tweets 3 min read
1. I gave my everything to fighting the exercise stigma M.E. patients face since I joined the community. In response I have been gaslighted by MEA who spread lies about me, twisted the story and failed to consider for even a nano second my upset with their actions then blocked me 2. I’ve been called hateful by another.

I will attach links to original posts at the end. I stand by absolutely everything I said and I have nothing to hide. It’s MEA who deleted shared concerns by other patients.
Apr 16, 2020 16 tweets 5 min read
@MEAssociation can you please clarify why you promote Instagram accounts of peeps who claim exercise was key to their recovery? EXTREMELY dangerous! Exercise intolerance is the most crucial criterion to diagnosis of M.E. Thats why we fight GET to be removed from NICE guidelines. @MEAssociation a number of people have been very hurt by your endorsement. It is critical for you to send the message that exercise DOES NOT make people with M.E. better. If I saw that as an outsider, I’d assume the rest just didn’t try hard enough to exercise to get better.