Please help me raise funds for Long COVID research! All funds will go to Patient-Led Research Collaborative (more details and links below).

What's going on with me

I've had Long COVID for over 2 years now. The flavour I have is called ME or myalgic encephalomyelitis. Great name, right? This means different things for different people. I have a mild/moderate form, which means I can still work for the time being. But all of my energy goes into doing that, and there isn't a lot to spare. Doing more than I should sets off a "bear trap" of various debilitating symptoms. "Bear trap" because the more you struggle, the worse it gets. "More than I should" can change depending on the day. I can still walk around and often appear totally fine. But if I walk for more than 25 minutes or too quickly, the bear trap shuts, and the symptoms can go on for a long time (days or weeks). These include sudden and heavy muscle weakness, pressure in my head, headaches, fast heartrate, shortness of breath, trouble staying upright and disrupted sleep. At the weekend I spend most of my time sitting or lying down recovering. My ability to cook, clean and do other routine things can be affected. Exercise is past tense. There’s a lot more besides, but that’s mainly how it goes. As you can imagine, this has a pretty stark impact on my relationships, hobbies and general wellbeing.

What's going on with other people

Over 65 million people are estimated to have LC globally. Somewhere between 10-40% of those may have ME. There are no treatments and, as yet, no diagnostic tests. Some people are affected more severely than others. About 25% can't leave their house or bed. Many of these people can’t tolerate light or sound. Only 10-20% can maintain full time work. My friend Anne (pictured), has severe cognitive dysfunction that flares up with very little effort. Anne can’t work. She spends a lot of her time indoors, sensitive to light. Few people recover from ME. A few people improve over time (that’s where I keep my focus). Some people's symptoms slide and deteriorate. Infections set you back, so you have to be careful.

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Patient-Led Research Collaborative

The PLRC is a group of Long COVID patients and patients with associated illnesses such as ME/CFS and POTS, who are also researchers. Born out of the Body Politic Slack support group, they did the first research on Long COVID in April 2020 despite being sick themselves.

They conduct their own research into LC and related conditions, collaborate with medical research centres and academic institutions around the world, and oversee investment into key research projects.

Links

CDC - one-pager on ME

PLRC - ongoing research projects

PLRC - NY Times article Nov 2024

Thanks so much for reading all that!