🗣Prof. Danny Altmann:
“Every word that Colin, Ravi & Rebecca said resonates so strongly, that all I can do really is put some meat on the bones and add to it. An overarching starting point, like everybody I get called by journalists and people.. 1/
#APPGCoronavirus #LongCovid
“All the time, ‘are we there yet? Is it over? Has Omicron saved us?’ And of relevance for today, a pandemic is a fluid progression, there isn’t a day when it’s over and we’ve been through many phases and many variants and all of the countries are interlinked.” 2/
“It could still be a very long and bumpy road. In the UK, the situation at the moment appears better under Omicron and more hopeful than it did under Delta. But just to remind you in terms of the discussion we’re having today.. 3/
“we still look to be facing 50k+ excess deaths a year. We’ve got a very heavy outbreak, very heavily skewed to schoolchildren who still don’t have specifications in place like sufficient vaccination and unclear whether mask mandates will continue in the coming period”4/
“And we have an NHS at breaking point and unequipped to cope. What that means in todays discussion, especially on Long Covid, we already as we’ve heard have a backlog of misery and disease dating back to the beginning of the first wave in 2020.” 5/
“We don’t really have the data in yet to know how badly we’re adding on to that total from the Delta and then the Omicron wave. If you look at the NHS and WHO websites, we have the beginnings of convergent definitions of Long Covid and the beginnings of a declaration of… 6/
“..intent in the UK for services but I think we’re a way off the ability to ensure that everybody with Long Covid who has those symptoms can access the care pathway that they need. I think in some cases we need to have a lot of discussions about the support they need for..” 7/
“..their disability irrespective of whether they have formal proof of SARS-COV2 infection or not. Two years into the pandemic it becomes a harder and harder discussion to have with certainty. As we now have many many people who receive no formal diagnosis in the days before.. 8/
“..we had PCR and antibody testing. We now have a very complex landscape of people who were infected in different ways, by different variants, variably overlayed by vaccines. It’s harder and harder to retrospectively workout what peoples infection history was.” 9/
“The UK, we’re ahead of the curve in the declaration of intent to roll out Long Covid clinics and putting money into along Covid clinics. And yet, all the questions we’ve heard about in the last hour is how reliably can you get referred?“ 10/
“Which clinical specialities sit in them? Do we have enough people to sit in them? And where were they trained and what were they trained in? How do we link up that care pathway, so there’s actually meaningful specialist support?” 11/
“What kind of therapeutics will they offer to actually make people better? And how many years are we planning this for? Those were big questions a year ago and they’ve just become bigger now I’m afraid. My impression of Long Covid care is that we do have the intent.. 12/
“..to treat people but often clinicians, running the clinics are working out guidelines and really using their training in general internal medicine, to improvise a service and principles. There are no guidelines, there is no textbooks.” 13/
“So patients across the country get a very uneven experience, & they don’t want rehab or to learn to adjust to their disability. They want their old lives back, they really, really do. This depends on having in place specialist teams: provision, diagnostics and therapeutics” 14/
“We are so, so far from having that in place. The screen grab on the left is for me, an exemplar of a dream team doing their very best at University College Hospital & this is them publishing this paper which I’d encourage you to look at, which is them giving the narrative..” 15/
“Of their first years experience, of how to set up and run a Long Covid clinic. To try & speak about some of those gaps, from everything we’ve heard of in the last hour, things would be better if we eased the acceptance and the pathway into Long Covid care and partly that.. 16/
“..depends on better diagnosis and things like bio markers and blood tests. Around the world that field has moved on considerably, we’ve heard a lot about gaslighting and failure to recognise - please let everybody in the UK understand that this is a global pandemic,” 17/
“And everywhere that’s had this virus, has Long Covid & the findings are similar all across the world. There are many meta-analysis papers reporting that you have the same thing whether you’re in Wuhan, Bangladesh or anywhere else.” 18/
“Some papers like this one from Aus, the beginnings of the kind of things the lab does as well, looking at serum biosignatures that would help to diagnose Long Covid & they came up with this test that if you had strongly elevated interferon-beta, gamma, pentraxin.. 19/
“..and interleukin-6, that was a strong marker of Long Covid. That’s the kind of thing we’re all trying to do to get better clues about Long Covid. I know that people are very, very anxious to understand the mechanism and implications for therapeutics.” 20/
“A lot of people are interested in, for example microclots and my response to everything we’ve heard in the last hour is I so understand the anxiety to get the ball rolling and treatments rolled out. In that perhaps I’m a little conservative that in the same way we had.. 21/
“The recovery trial for Covid, let’s stick with a randomised, controlled trials and proper guidelines and research to work out what we like best and what works best and try and do it like that. We’ll do a bit of immunology, this is actually not from our lab, it’s from our.. 22/
“..rival lab at Yale, this is the kind of direction of travel. The thing on the right that looks like a starry, starry night is a kind of heat map of all the different autoimmune bodies that come up in people who have been infected with Covid.” 23/
“What it says is we’ve got plenty of potential explanation for the pathogenesis of Long Covid. What this virus does it to turn on a massive array of autoimmunity in those who have had it. It’s not surprising to me that, that’s linked to the symptoms that we’ve heard about.” 24/
“What we’re doing in the study that we’re embarking on in my lab, is to really look properly at underlying mechanism. So that’s looking at disrupted immune subsets, autoantibody screening, programming of T cells and at immune response of the virus to itself.” 25/

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More from @AppgCoronavirus

Jan 18
🗣Dr.Claire Steves continued:
“Looking in the national core studies, from cohort studies across the UK we’ve looked at 10 different longitudinal studies. Our best estimates are that about 5% of middle aged people are experiencing long term.. 27/
#APPGCoronavirus #LongCovid
“..symptoms that are lasting about 12 weeks that are affecting their ability to function as normal. It’s less in younger populations, about 1.2% of 20 year olds. Overall that leads to approximately about 3% of the population that have had coronavirus, have had symptoms.. 28/
“..that affect their life for more than 12 months. I think personally that’s probably about where I’d sit the best estimate. But these things are difficult to really determine. So here’s our projection, while I’m saying it may be slightly less than what ONS said.. 29/
Read 18 tweets
Jan 18
🗣 Dr. Claire Steves:
“While I’m doing epidemiological research, I’m also a clinician that sees people with Long Covid as well. I’m sitting in my clinic today. I’m a geriatrician which means that I work in a memory clinic, that’s why I.. 1/
#APPGCoronavirus #LongCovid
“..see some patients that are referred through to me from Long Covid clinics but my role today in talking to you is I’m Cohorts lead for the CONVALESCENCE study which is one of the national core studies. Elements of it are looking at Long Covid but I’m also PI on the ZOE.. 2/
“..study on Long Covid so I’ll tell you about a bit of the research from there. You guys asked me just last Thursday to answer 3 questions so that’s what I’m going to focus on today. The first one is ONS data a reliable estimate of the no of people living with Long Covid.. 3/
Read 25 tweets
Jan 18
🗣Prof.Danny Altmann continued:
“One of the things that’s happened since we’ve last met, NIHR have put quite a lot of money into different studies to look at underlying mechanisms and better treatments.” 26/
#APPGCoronavirus #LongCovid
“We certainly are networked into an enormous number of studies nationally and internationally, which I hope has got to be a good thing. But also I know that many sufferers get very cross with us because it feels like when they set up these studies, they suddenly start.. 27/
“..moving at a glacial speed as they get all the infrastructure in place and all the contracts in place and the staff employed. I promise you it is moving along, big stuff will happen in the next 6-12months.” /28
Read 8 tweets
Jan 18
🗣 Professor Brendan Delaney: There are staggering numbers. The recent ONS survey shows that over 500,000 people have had Long Covid for over 12 months.
🗣Professor Brendan Delaney: “The best way of thinking about this right now is…we have a lot of symptoms that wax and wane and come back when people think they’re better... there are lots of overlaps between when you get one symptom and another symptom."
🗣Professor Brendan Delaney: “GPs are hugely variable, I say as a GP. I’m afraid many of my colleagues are very reluctant to prescribe things ‘off licence’ for treatments of POTS and MCAS and stuff.
Read 6 tweets
Jan 18
🗣Ravi Veriah Jacques:
“I know particularly, early on in the illness it was just incredibly difficult to go from being an active person in their 20s to spending all of my time in bed. It was probably one of the most depressing periods of my life” 1/
#APPGCoronavirus #LongCovid
“Because I had no idea whether I’d get better, it went on for days and then weeks and then months and there was no change and I was completely despairing. I thought this would be my life, while I had to watch for the rest of my life, my friends would live the life.. 2/
“I was supposed to live whilst I’d be stuck in bed. Overtime I did learn how to live with Long Covid and for me that’s been very much believing that I’ll get better, even if the evidence doesn’t exist. I think for me I really have to believe that someday I’ll get my life back.”3/
Read 5 tweets
Jan 18
🗣Colin & Rosie Pidgeon:
“If I’m honest some days she seems worse than a couple of weeks ago. I don’t know if that’s because she’s abandoned hope and that’s a very hard thing to see in your child. She’s on 2 different sets of antidepressants” 1/
#APPGCoronavirus #LongCovid
“Does it feel like she’s getting better? No it doesn’t. I can’t answer it in any other way than that. When we look around and we see people like Ravi and Rebecca who’ve been struggling with this for months upon months, upon months, it’s scary.” 2/
“On the other hand we do know that people do get better, but we tend not to see them because the people who are tweeting about this or who are on Facebook talking about it tend to be that group of people who haven’t got better and there are an awful lot of them.” 3/
Read 5 tweets

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