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Jan 18 • 5 tweets • 2 min read
🗣️ Rebecca Logan: "I've had absolutely nothing from a Long Covid service in NI. I was told by my GP I was anxious and depressed and I was described antidepressants, despite me arguing that it was a physical condition" 1/

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"I have been campaigning in NI from Sept 2020 to try to get answers & help... really we've all had to look for help ourselves. As an extremely unwell person, it is very very difficult, especially with brain fog, cognitive issues" 2/
"with Long Covid we have been disbelieved and dismissed and had constant gaslighting, so we've withdrawn into ourselves and own community and not sought the help we probably should have demanded" 3/
"The most help I've had is from a charity in NI... it is very frustrating as a health professional myself to feel so disheartened and disappointed from the services that haven't been provided."
"I'm 21 months down the line here and now I've come to Germany to be believed, to be treated, and hopefully can develop something that will help others" 5/

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APPG on Coronavirus Profile picture
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
APPG on Coronavirus Profile picture
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
APPG on Coronavirus Profile picture
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
APPG on Coronavirus Profile picture
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
APPG on Coronavirus Profile picture
Jan 18
🗣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/
Read 25 tweets
APPG on Coronavirus Profile picture
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

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