Er....... Hi everyone.. I hope you are all doing as ok as possible. So. Couldn’t believe it what I saw when this popped up on the BBC News website last evening. I think I know my opinion on this question. How does everyone feel I wonder? (Another silly question????). Including Lupus UK and so many other charities and medical bodies?!
Keep up the fight to keep safe all... 💪🏻✊🏻as think it’s down to us now, especially those who don’t already have the emergency antibody meds to hand in case of contracting the virus.. Or aren’t deemed quite eligible for it.
D x
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DJK99
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The impression I get thus far is that the scientific and medical Rest of the World is less than enthusiastic about being led out of Covid by the UK given its track record on lifting restrictions!
We've had a lifting of a restriction today: no longer have to WEAR our FFP2 masks outside, but you must carry one to put on if it gets crowded. We weren't really wearing them here when outside but this is rural Alps - but you don't get into a shop without one.
I did laugh in Tuesday though - I had to collect something from the PO. You can't go into a PO without a Green Pass - but you have to enter, wait your turn (only a queue of 3 inside, the rest have to wait outside) and only then must you find your Green Pass to show to the barcode reader on the counter. Which seems a bit late ...
Well sounds a hell of a lot safer than here! No masks, and utterly nothing at all soon by looks of things! It’s a frickin free for all for Covid. Not happy.
I wouldn't be either l I do feel safe here - and while I NEED to have a trip to the UK soon, I'm very unenthusiastic. The ferry crossing doesn't appeal either - it might take me a week to get out again ...
Sorry you need to come here. Everyone says it’s a much milder disease... but not for some of us. Does feel rather like russian roulette going anywhere now! Hope you’re ok.
I live in Connecticut, USA and our school mask mandate on a state level ends at the end of the month and localities are allowed to set their own rules accordingly. My town has a public hearing to help lead the decision for the school moving forward. No matter the decision the teachers and staff will likely choose to wear masks in schools until June while the children’s parents will decide what their children do. I am ok with free choice. Covid will always be here now it is time for us all to get use to living and working with it at our personal comfort levels. You can always choose to still mask up if you want too
Thanks Roarah - of course and we will be... certainly as no one will have to self isolate if Covid positive anymore... Is that what's going on there as well then?
We are a few weeks behind the uk in infection so not there yet i do foresee our isolation rules ending this spring and for the greater good of our children. The children need normalcy and consistent in person learning and to see smiles again now that the threat of severe covid has been essentially mitigated . Kids have been the greatest victims of covid in my opinion. The effects and damage of closing schools for months will be life long.
That seems a bit much. I had to take my daughter out of school two years ago to homeschool her, and she has thrived. I mean really found herself, rather than being a school drudge. I think that's true for lots of kids, seeing there is a bigger world out there. Schooling in the UK is so bad (not because of the teachers but the government set curriculum and stupid rules).
As for kids missing out, I used to teach prisoners degrees and some did really well, despite having no formal quals. It's never too late.
I'd tend to believe all the hand wringing about the kids and ending Covid rules more if they actually kept them safe in schools and put more money into education.
One of the most important things vulnerable people can do, in addition to being fully vaccinated, is to receive early treatment when symptomatic. We fo have the tools to deal with this virus now.
The UK seemed to do an impressive job of reaching high risk people and having a system in place for treatment them fast.
We are moving toward the “living with the virus” phase here in the US now too. The numbers are way down.
From what I understand everyone will eventually get Covid. A big effort has got in to protecting the most vulnerable. We now have the means to do that.
I know, but I think a lot of us in the UK haven't managed to get the PCR test and/or the meds at home ready in case we get covid. My GP said call if you get the symptoms and a positive test - but you need the meds quickly to make it work in time, so hope it all works out in time for everyone. I know - it does seem inevitable we'll all get it... But personally I am rather concerned about it (and for a few of my friends with similar complexities) with everything I have going on ie recurrent breast cancer within 2.4yrs, heart conditions x 3, non existent Complement 4 (recent studies state that is a real problem with covid as the immune system cannot work to deal with the virus and those with this and covid have serious illness or don't make it, see:ncbi.nlm.nih.gov/pmc/articl... ) and often low Complement 3, neutropenia, inflammatory arthritis, vasculitis, raynauds, chilblains, Sjogrens, lupus, neuropathy, anaemia, IBS (but need to be tested for Inflammatory bowel and scleroderma) plus tons of other symptomatic stuff as part the diagnoses mentioned.
It's just rather worrying for some with not knowing how we'll do if we get it... or rather, as you say, when! The numbers here in the UK are way high still to be thinking of getting rid of the isolation period for positive people. I guess it is a matter of if not now, when.. as it will get us in the end by the looks of it.
Ah well... stiff upper lip and just keep on keeping on etc! Take care x
You surely better be able to get the PCR within five days of symptoms! True, it was a big problem here too when Omicron hit. But our governments went into high gear to obtain testing and the anti-virals .
The UK bought a lot of Pfizer’s anti-viral, which can be taken orally. With numbers so much lower, you should not have any trouble getting treatment, particularly as a high risk patient.
Maybe @PaulHoward has more information specifically on how lupus patient’s did with treatment during the Omicron wave.
A forum member posted on her recent experience with Covid. She had very rapid treatment with a monoclonal antibody and did well.
I really think we have to trust the experts who say we are in a new phase and can now manage. The immunosuppressed patients have always been the highest priority.
I think it is stupid. This was a political statement to appease back benches. I myself feel I have been left high and dry. My employer has already been on to me about coming back into the office.
Just in the process of getting a referral to OHS. Have also contacted union. It just really worries and stresses me at the thought of going into an open office. I have shielded all this time now they are throwing that out the window and just get in the office.
OH will be able to help you - it is their job. An d get advice letters from your clinicians ie if you should work from home to keep you safe. I did this way before the virus as was becoming very ill working in the office with the lights, noise and stress levels, quite apart from trying to get there and back each day. I know it'll depend on what you do, but if you could do your job from home, and you're high risk then OH should really listen to your clinicians if they feel working from home is the best thing for you. Fight your corner and get your clinicians to help as much as possible. Good Luck. D
Thank you murtoz for that info. Trouble is my employer seems to be disregarding that and says restrictions are lifted and they want me back in the office.
That is the right attitude, SV. Immunocompromised people will have to take extra measures. The best to protect you is important. And large crowds are probably not good. I just read immunocompromised people need to insist others are vaccinated.
I do think you will be well taken care of. Looks like in both the UK and the US the effective medications are reserved for people like you. That is only fair.
Oh yes - I totally follow all the guidelines as advised by the government and NHS for CEV's... and go shopping myself although don't go to bars and restaurants... (very sadly) - I just feel nervous when out.. and feel awful having to ask friends (especially those with kids) to do a test before seeing me and wearing a mask at all times even outside etc.. The right ones don't mind.. It's actually the workers in Waitrose and Boots etc that worry me - most of them seem to be exempt. Anyway, it is what it is... Thanks for your input Kay x
That is so true. The right ones don’t mind. I know people who had to tell unvaccinated family members they couldn’t come to holiday events. One son, in fact, came down with Covid a day later. Had he come to the event, he could have infected a pregnant sister who is having twins and has already had a major procedure.
As our medical leader Fauci has always said, we have to protect the most vulnerable. Sometimes people confuse the priorities.
I am feeling much better about things and think as long as people are vaccinated and the high risk people get immediate care, we will be okay. The problem in the US is the low vaccination rate. Big worry.
Mask up, test, and wait until spring to eat outdoors! 😀😀
Probably there are many who are concerned. Having been introduced to mask wearing for the first time during this pandemic, many of us will continue to wear them of our own choice. On the other side of the globe people have been using masks for years - not only has it helped reduced air borne-infection it also helps when there is pollution.
Maybe there is a battle to be fought in terms of communicating the needs of the more vulnerable. Should we be asking how this best be done?
I don't think it our place to say people can totally rely on treatment if they get covid. It may help to reduce risk but the virus is out there, easily transmitted and continually mutating. We don't know yet how effective these treatments will be in the long term, and if they will protect all who take them - it is an unknown.
Humanity has different views on the relative importance of existing work / business versus caring about the health of our neighbours. We all also may have different views on the freedom of individuals, to do what they like, versus the responsibility individuals have not to infect others. Values vary and I guess each of us has our own position on the two spectra.
My experience is I can never assume I will be taken well care of. If folk are rich and they have loads of money possibly they get better treatment and have a better experience of healthcare, Please remember this is not necessarily the same for others.
I was not impressed when I had covid (moderate - at home), when I had long covid and now when it has been impossible to get NHS help for the many symptoms I have had over the last year.
I was fortunate to be able to afford a private appointment in the end - only because of this did I get a diagnosis.
My AZ vaccination was a nightmare in relation to its affects. My Pfizer jab (that I had to wait many months for because I was told I could only have AZ) was much much better. I guess it has something to do with Pathologic Antibodies to Platelet Factor 4 after ChAdOx1 nCoV-19 Vaccination, but I was never tested to see what had gone wrong.
If anything has come out this pandemic it is I have learnt not to trust what I hear. I feel much happier working out what I believe from my experience of having covid, and what friends have shared based of their experiences. Grass root sharing is happening everywhere and I don't think the nation will all drop their masks quite yet fortunately. Some sort of compromise and clearer thinking may result in the end.
Obviously stupid, but that's our government all over. That ginormous narcissist of a PM is just doing it to save his skin (and he's owned by the Covid Research Group). They've already shown they don't care if we die.
But enough of the politics. It would be useful if Lupus UK were able to lobby on our behalf to make sure we receive a 4th vaccine and antivirals. I was lucky and got designated CEV early on, so have been on that list since (and have got the PCR and hotline for antivirals). No-one should be missed off.
I am not looking forward to getting Covid, repeatedly, for the next 10 years.
You are right though, in my opinion. Boris is in the mire up to his armpits and is using every tool he has to try to make public opinion go his way. What annoys me is that the “National” news reports it as happening all over the UK and it’s happening in ENGLAND not the UK! They did say England at the start of the commentary but from then on it’s spoken of as if we are all the same. There are organisations on the internet sending out mailing messages giving parents info on the lifting of all restrictions. That means that the message is that everything is safe, and like you I am worried. Soon the tide of public opinion will turn against people who wear masks and worry about the virus spreading, I’m convinced. Fingers crossed I am wrong. Stay safe and warm. X
They may do. I think people in the UK are quite traumatised, and it's coming out in different ways.
I do wonder, if we can afford to keep ourselves out of circulation a little longer, enough people will become infected and it dies down from there. Or another one is people will continue to wear masks and isolate. That's the optimistic scenario. The pessimistic scenario is that another variant comes along and all the detection capabilities are dismantled. They don't want to fund vaccines anymore. Many people will die.
It is out and out a political distraction tactic and little to do with the health and welfare of the people let alone the vulnerable. I will continue to avoid crowded places, continue to wear a mask and sanitise. Who knows how many asymptomatic people are out there. Xxx
You have a good point about possibly not knowing if you are infected. You might want to talk to your doctor about testing more frequently or with specific symptoms. I think they only use anti virals if someone is symptomatic. You and your doctor would be the ones to know if there is a change to indicate Covid.
If you are symptomatic and have a positive home test, your doctor will move fast to confirm and get you on anti virals.
There are many experts here in the US who think we are moving too quickly.
Vulnerable people definitely have to continue to protect themselves.
Your family and friends should be willing to test for you. It is a small thing for an important cause. The owner of our local coffee bar tested before visited a bed-ridden regular customer. Everyone should be that responsible.
There is an updated guide in Creaky Joints for how high risk patients should protect themselves and prepare since Omicron. I noticed an immunocompromised patient with a positive PCR does qualify for the monoclonal antibody within ten days of symptoms. Would it be helpful to you and provide peace of mind to home test once a week? You may be given monoclonal antibodies even without clear symptoms.
It is a good question regarding symptoms and tests. I wonder if the answer varies. A healthy seventy year old with only a positive test may not get anti virals, whereas you would be treated as soon as the test is positive maybe.
This chart shows how much deaths have decreased due to treatment and vaccination. The emergency is truly over. The mitigation measures were always to lower death and high hospitalizations and even with the omicron spike those metrics were far lower than last winters’ lesser infection rates. The mitigation measures are no longer universally needed the pandemic has entered the endemic phase and governments are acting accordingly. Your country is farther out than others by the metrics so it is likely the UK is ending mitigation policies before others because of that. This chart shows how well vaccination and treatments are working.
Rubbish! Hundreds of deaths reported every day in the UK. I have kept a journal since day one in March 2020. AND DONT FORGET they have cheated those figures. Originally it was deaths from covid. Now it “people who have died within 28 days of a positive covid test”. So people who don’t get tested don’t get counted. People who die any time after the 28th day don’t get counted. It’s a big con! Even with those false figures we have recorded over 400 deaths several days this week. It’s not over, it hasn’t officially been declared an epidemic yet and people are still dying from it. And we have every right in the UK to be scared. Even people who are not immunosuppressed. You are not comparing like with like when you say it’s less compared to 2020. You don’t know the true figure. None of us does. You only get the cheating, government preferred figures. I have no faith in this government at all. If they told me it was raining outside I’d look through the window to check.
Hoped you enjoyed your twin time. Sounds like a good break & you seemed well prepared. Beauty of london is take away 😊 at a phone call, helps when trying to avoid covid. Wish someday to go back there....Hoping to see my twin, who is travelling to me this month.... Both of us have been pretty isolated/isolating so no worries for either of us...
Thought you’d be interested to know that a doctor - not an epidemiologist or virologist- who I had lunch with agrees with you that we are loosening restrictions too soon. His reasoning was just that we didn’t seem to be down far enough on the omicron curve to go this far.
We don’t know what we are doing in the US! We are all confused 😐.
We are both going to continue to wear masks on public transportation and in crowds.
Thanks Kay - well it was "Dr Simon Clarke, from the University of Reading, who says that the move is either "brave or stupid", for the same reasons as your friend says... as you'll have read in the article link in my post that prompted the heading... but certainly I can understand the arguments for and against... However, from my own personal viewpoint, and thinking of those like us, it's a little too soon I think! I double mask as I always have, inside and outside... with antibac slavered all over my hands, etc etc and asking my friends to test pre meet. But generally I'm indoors, as the safest place to be. x
Clarification: Citizens are confused by the loosening of restrictions. At least in New York we don’t know for sure whether restaurants will ask for vaccine status or whether we still will need to wear masks in certain places.
I’m ok with it. I think it’s always been an issue of self assessment risk assessment. I’ve already been hospitalised because of covid, but at the time I was double jabbed and came off lightly (monitoring for three days) because my obs were worse than I appeared.
I have now had three jabs and am getting my booster in about 2 weeks. I’ve had my pneumonia jab and my flu jab.
I have a cousin who had type 1 diabetes and had a kidney, liver and pancreas transplant, and by sheer bad luck his new pancreas is now type 1 diabetic, so he’s extremely vulnerable. Also, he’s male over 50. And he agrees with the lifting too.
They’re not saying “go out and act pre-pandemic”. It’s just a lifting of the “legal” restrictions. I still wear a mask when I can. If I can’t wear one because of my breathing then I reevaluate where I’m going. Do the risks outweigh the benefits? Is it somewhere I can easily avoid? Is there an alternative? Etc. I see most people still wearing masks in shops etc, not so much in pubs. But then I don’t *need* to go to a pub so 🤷♀️
But I really can’t bring myself to think that, legally, my 24 year old son and his wife should be limited in their lives because of me. (TBF, my DIL has rheumatological issues so is careful anyway). But I think that the majority of people aren’t terribly affected by this, and they shouldn’t need to change for me.
Pre-covid, a friend was having chemo and had to make the same decisions, but without the added advantage that much of the public were mask wearing, and nobody really understood why she was being careful. Most people now at least understand the caution we exercise and respect that.
DJK99 - was able to access the article - new capability for me - and yes, it seems there are experts in the US and the UK who are questioning whether this move to ending all restrictions is too fast.
Another interesting thing is that Americans who are at high risk are feeling abandoned too. There needs to be more talk of what these shifts actually mean for vulnerable people. I do believe they are always the ones the medical authorities are most concerned about. But we need to hear from them.
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Knitted hearts for the beloved deceased and relatives of Covid 19 
Update on is it a flare or hydroxy side effects? post
Joint Pain is getting worse
Confused????summer is usually the poision?but it seems winter is also?
