Discover and read the best of Twitter Threads about #appgcoronavirus
Most recents (16)
š£Dr.Claire Steves continued:
āLooking in the national core studies, from cohort studies across the UK weāve looked at 10 different longitudinal studies. Our best estimates are that about 5% of middle aged people are experiencing long term.. 27/
#APPGCoronavirus #LongCovid
āLooking in the national core studies, from cohort studies across the UK weāve looked at 10 different longitudinal studies. Our best estimates are that about 5% of middle aged people are experiencing long term.. 27/
#APPGCoronavirus #LongCovid
ā..symptoms that are lasting about 12 weeks that are affecting their ability to function as normal. Itās 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/
ā..that affect their life for more than 12 months. I think personally thatās probably about where Iād sit the best estimate. But these things are difficult to really determine. So hereās our projection, while Iām saying it may be slightly less than what ONS said.. 29/
š£ Dr. Claire Steves:
āWhile Iām doing epidemiological research, Iām also a clinician that sees people with Long Covid as well. Iām sitting in my clinic today. Iām a geriatrician which means that I work in a memory clinic, thatās why I.. 1/
#APPGCoronavirus #LongCovid
āWhile Iām doing epidemiological research, Iām also a clinician that sees people with Long Covid as well. Iām sitting in my clinic today. Iām a geriatrician which means that I work in a memory clinic, thatās why I.. 1/
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ā..see some patients that are referred through to me from Long Covid clinics but my role today in talking to you is Iām Cohorts lead for the CONVALESCENCE study which is one of the national core studies. Elements of it are looking at Long Covid but Iām also PI on the ZOE.. 2/
ā..study on Long Covid so Iāll tell you about a bit of the research from there. You guys asked me just last Thursday to answer 3 questions so thatās what Iām going to focus on today. The first one is ONS data a reliable estimate of the no of people living with Long Covid.. 3/
š£Prof.Danny Altmann continued:
āOne of the things thatās happened since weāve last met, NIHR have put quite a lot of money into different studies to look at underlying mechanisms and better treatments.ā 26/
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āOne of the things thatās happened since weāve last met, NIHR have put quite a lot of money into different studies to look at underlying mechanisms and better treatments.ā 26/
#APPGCoronavirus #LongCovid
āWe 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/
ā..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.ā /28
š£Prof. Danny Altmann:
āEvery 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/
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āEvery 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
āAll the time, āare we there yet? Is it over? Has Omicron saved us?ā And of relevance for today, a pandemic is a fluid progression, there isnāt a day when itās over and weāve been through many phases and many variants and all of the countries are interlinked.ā 2/
āIt 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 weāre having today.. 3/
š£Ravi Veriah Jacques:
āI 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 lifeā 1/
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āI 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 lifeā 1/
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āBecause I had no idea whether Iād 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/
āI was supposed to live whilst Iād be stuck in bed. Overtime I did learn how to live with Long Covid and for me thatās been very much believing that Iāll get better, even if the evidence doesnāt exist. I think for me I really have to believe that someday Iāll get my life back.ā3/
š£Colin & Rosie Pidgeon:
āIf Iām honest some days she seems worse than a couple of weeks ago. I donāt know if thatās because sheās abandoned hope and thatās a very hard thing to see in your child. Sheās on 2 different sets of antidepressantsā 1/
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āIf Iām honest some days she seems worse than a couple of weeks ago. I donāt know if thatās because sheās abandoned hope and thatās a very hard thing to see in your child. Sheās on 2 different sets of antidepressantsā 1/
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āDoes it feel like sheās getting better? No it doesnāt. I canāt answer it in any other way than that. When we look around and we see people like Ravi and Rebecca whoāve been struggling with this for months upon months, upon months, itās scary.ā 2/
āOn 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 havenāt got better and there are an awful lot of them.ā 3/
š£Ravi Veriah Jacques:
āI want to echo a lot of what Rebecca and Colin said. I think what I need is medical treatment and thatās exactly what I havenāt got so far. Psychological support is important, stuff like disability benefits is also importantā1/
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āI want to echo a lot of what Rebecca and Colin said. I think what I need is medical treatment and thatās exactly what I havenāt got so far. Psychological support is important, stuff like disability benefits is also importantā1/
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āParticularly for a lot of long haulers who have lost jobs and who need to support their families. That personally isnāt so important for me as Iām able to stay at home, but no amount of disability benefits or psychological support will give us our lives back.ā 2/
āThe only thing that will give us our lives back is medical treatment, otherwise weāre just having to do what Iām doing at the moment. Which is resting at home most of the day in the hope that Iāll get better. But thatās a hopeless situation to be inā 3/
š£Colin and Rosie Pidgeon:
āAt the moment, we have a good relationship with our GPās, theyāre great. When my friend sent me the article about how to assess and diagnose POTS, I rang the GP and they booked us in and did it,ā 1/
#APPGCoronavirus #LongCovid
āAt the moment, we have a good relationship with our GPās, theyāre great. When my friend sent me the article about how to assess and diagnose POTS, I rang the GP and they booked us in and did it,ā 1/
#APPGCoronavirus #LongCovid
āAnd followed the instructions in the article, so I canāt complain about the goodwill. But they havenāt got the tools. I donāt know whether Rosie has micro-clots, she quite possibly does but I donāt know of anywhere to get her tested. Iām sure QUB has the wherewithal..ā 2/
āIām sure the proctology labs in some of the hospitals have the kit that they need to test for it but how do I, as a parent of a child, organise for that to happen. I donāt know the pathway in. Rebecca mentioned a consultant who she used to work with whoās been seeing herā 3/
š£ļø Rebecca Logan: "I feel hopeful that my symptoms may ease while i'm here [Germany], however I can't stay here funding this indefinitely to keep that hope alive" 1/
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"If we have the equipment in the UK then what is stopping us from getting this up and going here? Rather than letting people go to Germany & other countries just to get that sense of validation and sense of hope"
"I have to go home, I've come away from my daughters and that is breaking my heart, and I can't afford to... we're in the 21st century, we're in the UK, we should be able to have this treatment and reassurance in our own country" 3/
š£Colin and Rosie Pidgeon
āIt was the start of September when this first started with Rosie and then it was the start of October when she was referred by our GP to paediatrics. Sheād had a series of blood tests like Ravi,ā 1/
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āIt was the start of September when this first started with Rosie and then it was the start of October when she was referred by our GP to paediatrics. Sheād had a series of blood tests like Ravi,ā 1/
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āTo rule out things like low iron, or diabetes and things that can cause dizziness. So she was referred for an urgent paediatrics appointment, 12th October something like that. When I rang the hospital appointments line, it actually was the 1st Novā¦ā 2/
āWhen the Long Covid clinics in Northern Ireland were first announced. I spoke to our local hospital, the outpatients thing and they told me that they were currently seeing the urgent paediatric referrals from June. So it was likely to be February or March before she was seen.ā3/
š£ļø Rebecca Logan: "Priority for me is to be believed and stop the gaslighting... there is evidence proving that it is a multi-system vessel condition. We need clinics that are face to face, led by a team who are educated" 1/
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"Treatment that we'd get is based on current research, like anti-coagulation therapy, which is what i'm receiving in Germany... it is a key priority that we get this diagnosis of microclots and hyper-active platelets recognised in the UK" 2/
"We can't keep living this... I am a shell of the person I was. And It's not in my head. It has been quite overwhelming coming to Germany and meeting others from around the world who have come here to get treatment for Long Covid, and funding it themselves" 3/
š£ļø 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/
š£Colin and Rosie Pidgeon
āRosie did her GCSEs last year, and she was on her second day of school starting her As Levels when she got pinged as a close contact. So we arranged for her to have a test the next dayā¦ 1/
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āRosie did her GCSEs last year, and she was on her second day of school starting her As Levels when she got pinged as a close contact. So we arranged for her to have a test the next dayā¦ 1/
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āWhich she had and came back negative and then the day after that she was drinking orange juice in the kitchen and she said āDad, I canāt taste thisā. So we booked her in for a second PCR, again it was negative.ā 2/
āGiven that she had symptoms we figured it was the right thing to do, to keep her off school. She stayed off and did the day 8 test which again was negative. So sheās never tested positive for Covid.ā 3/
š£ļø Rebecca Logan: "Pre Covid I worked 12-18 hrs a week in my local ED and taught 12-14 fitness classes... I contracted Covid in April 2020 after working in Covid ED with inadequate PPE" 1/
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"I could not return to nursing as my brain fog and cognitive function was not good. Initially exercising was ok, however after 4 weeks of this I was becoming increasingly fatigued, breathlessness worsened... I was advised by a neurologist and cardiologist to stop and rest" 2/
"I thought I'd be fine in a month or so, however I gradually deteriorated to the point I'm at today. Every single day I waken as if i've not slept, fatigue is crippling, I have tinnitus, brain fog, cognitive dysfunction, joint pain, muscle pain, poor circulation...3/
š£ Professor Kate Ardern "we need confirmation that we are going to get continued investment in local health protection systems beyond March, because the Covid money runs out then"
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š£ Professor Kate Ardern "we need maximum flexibility in the vaccination programme"
š£ Professor Kate Ardern "and a recognition of the importance of not doing things purely in a top-down fashion"
.@tes is following the @AppgCoronavirus on schools and Covid-19. Follow here for the latest updates #appgcoronavirus
Caroline Lea says she was threatened with fines for taking her children out of school. "I felt very belittled by the whole process because I was being treated like a truant," she says.
She says she explained that if her children caught Covid she would possibly lose her life but the head became "the dragon in our world, threatening us with very real sanctions in our future lives."
