We are a small group of researchers who ourselves have Ehlers Danlos Syndrome.

We want to act after repeatedly hearing that Long Covid is disproportionately affecting those with EDS – but medical and research institutions have done nothing.

EDS is highly disabling. The ability to work, leave the house or bed is already on a knife edge, so a second debilitating illness can be the tipping point into deeply reduced quality of life.

More: a crucial treatment for EDS is harmful in Long Covid.

EDS causes recurrent dislocations, taking away our mobility. This is incurable but the main therapy is physio. However, a key feature of Long Covid is Post Exertional Malaise. This is where cellular processes in exercise worsen the disease itself, making exercise damaging.

In short: Long Covid would take away our main treatment.

This alone is alarming, but if EDS does raise Long Covid risk – that makes the picture truly grim.

We need evidence, and fast. Please help us fund a study!

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