United Kingdom: Independent SAGE

First question: Should we define two groups of survivors along the lines of (I'm paraphrasing) those with ME-type chronic illness, and those with a post-Covid injury such as lung damage?

Panel: Not a good idea. Several reasons given, including it being difficult to define how to separate them, the fact that post-Covid illness may look very different but not actually be different (as with acute Covid), and a suggestion that there may be people who have an injury such as vascular or organ damage that is driving symptoms, but they don't know it yet. Panel members prefer to keep the definition broad.

 

Second question: we're told long Covid is affecting the workforce. Covid is still circulating, people are catching it multiple times, one in 20 people who catch it develop long Covid, and the UK isn't currently vaccinating most of the population. When will we reach a tipping point when the majority of people have long Covid and won't be able to work? Will this change the way governments are ignoring Covid?

Panel: Don't think most will get long Covid. Depends which research you read, but the 10% figure is a risk of long Covid, not necessarily one in 10 people actually getting it. Also, some people with LC do improve over time, so the numbers affected fluctuate.

But there are sequelae to Covid, eg heart disease, that could end up affecting a lot of people. We don't know the full extent yet, but it is being made worse by the poor state of the NHS. We need to look at prevention, including vaccination. Concern that UK is narrowing groups to be vaccinated (including young babies who may never have access to a vaccine), would like to see research, as in US, on developing vaccines for longer term prevention.

Attitude is that 3% are unable to work due to LC .and we shouldn't think that's too terrible. But it is terrible if you're in that 3% – also if you're part of the other 97%, as it affects all of our lives, the economy, etc. There's currently no more research funding planned for LC research, and no answers have yet been delivered.


[Personal comment from me: if you get heart disease as the result of having Covid, how is this not a form of long Covid if we're adopting a broad definition? This wasn't raised or addressed in the discussion, though.]

 

Third question: increasing amounts of research showing connective tissue disorders, eg generalised hypermobility and Ehlers-Danlos syndromes, and hormonal disorders such as polycystic ovary syndrome, present increased risks of long Covid. Yet list of groups eligible for vaccination remain stagnant – why, and what can we do to encourage revision of list? Also, some research showing discrete immune profiles are risk for different subtypes.

Panel: Have dealt with second part of question [re different subtypes]. Vaccination programmes are designed by committees who do rigorous assessment within certain criteria, including cost-benefit analysis. But you have to include the right things in the risk assessment.

E.g., in paediatric assessments for vaccines long Covid didn't figure at all, but children do get long Covid. LC undermines the idea of allowing infection to spread. Would like to see other groups assessed/included, as we're not just vaccinating against acute disease as in 'flu, it's something else.

Funding for vaccines committee (JCVI) has been cut, which affects the work, the advertising they can do, the way they can liaise with communities, which isn't helping. Would like people to advocate with their MPs that JCVI is funded.

 

I only watched the presentation from where @Trish left off, as I haven't the energy to do it all today. But the discussion is really interesting, the discipline is good re. only one person talking at once, and more was probably said than I managed to scribble down.