Fundraiser for ME CFS and Post-COVID Patient Organisation

Dear friends,

Some of you may have noticed that over the past two years, I’ve almost disappeared from both my online and offline life.

I’d like to share why that happened.

In 2021, I developed post-COVID syndrome, and over the past two years, it has unfortunately progressed to a condition called myalgic encephalomyelitis (ME/CFS) — a severe neuroimmune disease.

Although myalgic encephalomyelitis has been known for a long time and was included in the WHO’s International Classification of Diseases back in the 1970s, there is still no effective treatment. It affects about 1% of the population, which is actually more than the number of people living with multiple sclerosis.

ME/CFS is a post-viral syndrome where the body’s ability to produce energy at the cellular level is disrupted.

It directly impacts the muscular, nervous, and immune systems, making even the simplest everyday activities incredibly difficult.

My world has literally shrunk to a single room — sometimes just my apartment. I’m not always able to watch a movie or listen to an audiobook, let alone go outside or work.

In this new reality, a huge source of support for me has been the Russian patient-led organization “Not Just Tired”, which focuses on raising awareness and supporting people with severe post-COVID syndrome and ME/CFS.

It’s still a very young organization, with very limited resources, but they are doing incredibly important work — bringing knowledge, hope, and a sense of connection to those of us whose lives have been turned upside down by these illnesses.

I would love to help them grow and continue their mission, so I’m launching a fundraiser in their support. In the organisation we would like to hire an accountant and invest money into software for content creation in order to spread awareness about both post COVID syndrome and ME/CFS and communication with the patients and policy makers in a more effective way.