Recognition. Research. Rights.

At Long Covid SOS, we are making an important change: replacing our third R from Rehabilitation to Rights.

Seven years since the emergence of Long Covid, this change is one we have long wanted to make. It reflects what is known about Long Covid and what people living with it deserve.

When we began campaigning for Long Covid to be recognised, we, like many, assumed rehabilitation would play a pivotal role in recovery. But evidence and lived experience have shown that Long Covid is a long-term condition, and that rehabilitation approaches are unlikely to help those with exertional intolerance and cellular dysfunction — which is many of the Long Covid population.

Any emphasis on rehabilitation can imply recovery is anticipated. However, many people remain significantly unwell despite their hopes and best efforts. In particular, rehabilitation approaches that disregard exertional intolerances like PEM or PESE, or the biological dysfunction identified in Long Covid, can be unhelpful and can cause harm and deterioration.

For people living with post viral conditions, this emphasis on recovery can have wider consequences. Too many have experienced disbelief, minimisation and approaches that place responsibility for recovery on the individual. When getting better becomes the expected outcome, those who remain ill can find themselves having to continually prove the severity of their condition in order to access healthcare, social care, welfare support, workplace adjustments and other essential protections.

Our rights cannot depend on our ability to recover.

We have not abandoned hope for recovery from Long Covid. We continue to support and champion work towards better treatments, prevention and, ideally, a cure. But while that work continues, people living with Long Covid need support and protection. That is why Rights has become such an important part of what we stand for.

Recognition means people are believed and their illness is taken seriously.

Research is essential for better diagnostics, treatments and prevention.

Rights mean access to healthcare, support, equality, dignity and the protections people are entitled to.

Our Long Covid SOS Bill of Rights sets out five fundamental rights: the right to be believed, the right to a diagnosis, the right to support, the right to safe healthcare and the right to funded research.

Changing Rehabilitation to Rights recognises the reality of Long Covid as it is today, while continuing to fight for the treatments and scientific breakthroughs that could change that reality tomorrow.

People should not have to wait for a treatment or cure before they are believed, supported, protected and given the care and dignity they deserve.

This is what people with Long Covid need and what we will continue to fight for until our campaigning is no longer necessary.