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United Kingdom: Independent SAGE
- Thread starter Robert 1973
- Start date
The first 17 minutes is a clear presentation with lots of graphs on prevalence of Covid-19 infections in the UK, then a section on Long covid prevalence in both the UK and USA.
Then Prof Danny Altmann who leads the section on Long Covid, starting with the estimate that it affects 400 million people worldwide.
He looks with some experts at how LC is being treated around the world.
The first guest is in France. They have government recognition that LC is an illness and national guidelines, and they've set up LC clinics, but no recognition as a disability for benefits, The LC clinics are really just directing people to other services, and treatments on offer are mostly psychological or cardiac rehab, with no recognition of PEM. The service is patchy and there's no education of clinicians so many patients are not getting any care, or told it's all in their heads. The few decent specialists have very long waiting lists, and there is no provision at all for children with LC.
Second guest is a cofounder of the UK based advocacy group Long Covid SOS. She starts by saying the problems for patients in the UK are very similar to what has been described for France, but with less government recognition.
She has collected information via her group from advocates in 10 countries and goes through them all, starting at 34 minutes.
Common features in many countries - treated as if they have a mental disorder, and no recognition of PEM, lots of people including clinicians not believing it's real.
43 minutes. Back to Danny Altmann and opened up to panel discussion. Topic tackled include whether LC is on thing or should be differentiated.
I stopped watching at that stage as I found it too tiring trying to focus on different people talking.
Then Prof Danny Altmann who leads the section on Long Covid, starting with the estimate that it affects 400 million people worldwide.
He looks with some experts at how LC is being treated around the world.
The first guest is in France. They have government recognition that LC is an illness and national guidelines, and they've set up LC clinics, but no recognition as a disability for benefits, The LC clinics are really just directing people to other services, and treatments on offer are mostly psychological or cardiac rehab, with no recognition of PEM. The service is patchy and there's no education of clinicians so many patients are not getting any care, or told it's all in their heads. The few decent specialists have very long waiting lists, and there is no provision at all for children with LC.
Second guest is a cofounder of the UK based advocacy group Long Covid SOS. She starts by saying the problems for patients in the UK are very similar to what has been described for France, but with less government recognition.
She has collected information via her group from advocates in 10 countries and goes through them all, starting at 34 minutes.
Common features in many countries - treated as if they have a mental disorder, and no recognition of PEM, lots of people including clinicians not believing it's real.
43 minutes. Back to Danny Altmann and opened up to panel discussion. Topic tackled include whether LC is on thing or should be differentiated.
I stopped watching at that stage as I found it too tiring trying to focus on different people talking.
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Kitty
Senior Member (Voting Rights)
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.
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.
Kitty
Senior Member (Voting Rights)
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.]
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.]
Kitty
Senior Member (Voting Rights)
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.
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.